My Chemotherapy Playlist

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Over the course of 35 rounds of chemotherapy I gradually added songs to this playlist. Some are dark or sad, but all of them have something in common: they allow me to draw strength and resolve from my emotions. Many of these songs are my all-time favorites, others I just love for this purpose and they fit the bill somehow either by song title or sentiment. I’m not sure exactly what criteria I followed for including a song in the playlist, but many songs volunteered to be here. Together they tell a story about who I am, and about my life’s journey including the battle with cancer. For that reason this playlist is a potent sort of self-expression.

Here is the playlist on YouTube. I encourage anyone who wants to walk this life’s journey with me, to listen to the playlist as you cook dinner or take a long road trip. If you’re really dedicated you can follow along and read the below commentary, and even view the lyrics if the song isn’t familiar to you.

There are really three sections to this extensive playlist – chemotherapy can take a long time. Counting waiting room visits, it’s an all-day affair from early morning labs until the end of infusions in the evening.  The first section is darker and more contemplative, and it turns on the song Morning Fog by Kate Bush to the second section, which is more uplifting and inspirational. The third section starts with I Choose You by Sarah Bareilles and consists mostly of love songs. Love is a critical part of battling cancer; you need as much of it as you can get to keep up your strength and hopefulness.

With or Without You (cover of the U2 song) by April Meservy

My hands are tied, my body bruised, you got me with
Nothing to win and nothing left to lose
And you give yourself away

One of my favorite songs by U2, this cover was performed by April Meservy spontaneously in a raw, deeply emotional state and is one of my favorite covers.  It was used by Meagan Duhamel and Eric Radford when they were skating in the 2018 Pyeongchang Winter Olympic Games.

Sometimes in life’s relationships you give parts of yourself away to keep the peace or to make other people more secure or comfortable. Part of loving someone is protecting their bubble or world-view, and by sacrificing part of yourself, you can let them persist in that state for a time. One day, though, you will open your eyes and realize that giving away parts of yourself is a slow death. 

To survive cancer I am losing some of my physical parts – my organs, my comfort, my hobbies, my independence – and the journey leaves me with nothing to win and nothing left to lose.  In the context of this song’s lyrics I think of chemotherapy and surgery, and I can’t live with or without them; and so this song was my first choice to open my playlist. Each time I go to the infusion clinic, starting with this song somehow gives me the strength to persist.

My brother-in-law JDZ lived in a house with me and my wife for years, and he was an enormous fan of U2, he listened to their music often and I just got used to hearing it in the background as the soundtrack to our lives. So I can’t even hear this song without him appearing strongly in my thoughts. He taught me a lot about finding joy and tranquility in life and in nature, even when the background noise makes those things very hard to find. Honestly I don’t have a whole lot of male friends in my life, and the ones I do have are all sensitive and thoughtful and comfortable sharing themselves and their thoughts. JDZ was a kind, steadfast, and selfless friend, and he was my brother. He left this earth way too soon and even after many years, not a single day goes by that he doesn’t appear in my thoughts one way or another. Every time I hear this song it triggers anew a deep sense of grief and loss. I am okay with the feeling of grief and loss because it tells me I have not forgotten him, and he will live in me for as long as I live.

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Penitent by Suzanne Vega

Suzanne Vega has been probably my favorite artist ever since my sister tricked me into listening to her first album by asking me to record it to tape but to supervise it carefully, as scratches on the record could cause it to skip and ruin the recording. Since then I’ve seen Suzanne Vega in concert a dozen times or more, and took a songwriting class session with her one time.  We share a birthday – July 11 – and also a tender, emotional way of self-expression.  And I think maybe lyrics like these helped make me be more honest with myself and others.

I chose this song because it is a lovely prayer to God that reminds me to humble myself to the ground, to look and listen for signs of God’s love in the world, and to respond. 

Now what would you have me do? 
I ask you please.
I wait to hear your voice,
the word you say
I wait to see your sign.
Would I obey?

Cancer is humbling and the temptation to retreat into pity and focus only on yourself is strong.  This song somehow gives me the strength to stay connected to people and the world, and to always reach out with love to help, heal, and comfort.

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Broken by Tift Merritt

Tift Merritt is a Raleigh NC native and has performed locally at various events for years. Her songs have been on my radar for years, heard over the radio or in local restaurants and taverns. I always enjoy her music and lyrics.

Now you’re broken and you don’t understand
What is broken falls into place once again
Hand of kindness, come and gather me in like a rainstorm
Again and again and again
I think I will break but I mend

I’ve always identified with this song since I have gone through a lot of my life feeling like I’m broken. There are lots of ways that I am different and not quite normal, and I don’t fit nicely into the regular mold of society.  When you get cancer you feel especially broken, and the idea of returning to wholeness is very attractive.  I find it comforting, the idea that kindness and love can mend all manner of brokenness.

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Manifesto by Nahko Bear and Medicine for the People

Don’t waste your hate
Rather, gather and create
Be of service, be a sensible person
Use your words and don’t be nervous
You can do this, you’ve got purpose
Find your medicine and use it

This is one of my top favorite songs. I first heard this song during a dance performance by Shellie Marie White Light and was shocked at how the song spoke to me. Nahko Bear is part Apache, Filipino, and Puerto Rican and I appreciate his songs and their deep personal and societal connection. Nahko and his family have suffered hard from the way native people are acted upon, and they often don’t have the freedom in life to choose their own path and reach their fullest potential.

In native traditions, medicine is a wholeness of spirit and all the things that can get you there. It is precious to me, the idea that everyone will find their spirit by following their own unique path – you can’t follow anyone else’s journey as a shortcut to your own wholeness. Life has so many distractions to get you to wander off the path into darkness: material things, fear-mongering politics, war, racism, television. Instead, you have to make positive personal, loving connections and use your discernment to only let things of real value guide you.  You have a special combination of talents that no one else has.  So find your medicine and use it!

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Moonshadow by Yusuf/Cat Stevens

I’ve loved this song pretty much since I first heard it from my high school friend Hunter W.  It’s meant different things to me at different points in my life, but right now I feel like next to my footprints in the sand, I’m leaving a wake of organs and removed body parts and wondering what will remain in the end.

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Demons (Imagine Dragons cover) by Boyce Avenue

So they dug your grave
And the masquerade
Will come calling out
At the mess you’ve made

This is such a perfect song as performed by Imagine Dragons it seems like sacrilege to put a cover of it in my playlist, but I switched it out because the original suddenly felt a little too noisy for the contemplative setting of the chemotherapy infusion clinic, and this mellower duet is an incredible cover and it just fit in the setting.

I have to be honest, I wasn’t a perfect kid growing up. There were couples who decided never to have babies after meeting me, and chaos seemed to follow me wherever I would go.  I’m sure all the good money was bet on me turning out to be a terrible person.  Even though I have great parents I always had a hard time obeying their rules or the rules of polite society; I had to work out every rule and principle by myself before importing it into my moral code.  Maybe I outright rejected the control that parents and society have on people. I never wanted to be controlled. I just wanted to find my own way and it was frustrating that everyone’s expectations always managed to get in my way.

One person in my life always took the time to carefully explain to me the extent of the messes I made, and gently inspire me to be a kinder and more thoughtful person.  That person was my best friend growing up and for all of life, my wonderful sister SG.

Despite all the best efforts of everyone involved, I still can’t pretend to be the best person ever. I’m never going to fit neatly into society’s mold, but I always try my best to make all my decisions with love and compassion.  This song helps me deal with all the demons of my past and the messes I’ve made along the way.

I wanna hide the truth
I wanna shelter you

One of the biggest messes in life is when you try to tell people your truth but they get angry or insecure, and they reject you, or tell you not to live that truth. So to shelter them you hide those parts of you by never mentioning them again, and before you know it, there is a whole room inside you that they will never know because you can never share it with them. The really sad and lonely thing about living is that no one in your life will ever really know who you truly are. That by itself is another kind of death that wears you down. Because of other people’s own demons, no one can ever really know the real you. That’s the place of darkness where your demons hide.

I know that all the people I know have their own struggles and demons, with differing severities and extents. I mindfully try and listen to all their self-expressions compassionately and without judgment. Judgment isn’t my job, thank heavens, and I absolutely don’t want it. By sincerely listening, I hope people will feel that I know them, I see them, and I love them no matter what. When demons are shared they can no longer live in the shadows.

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Dreams by Fleetwood Mac, cover by the Running Mates

I love Fleetwood Mac and Stevie Nicks, and this song doesn’t really relate to cancer or chemotherapy, but it is one of my favorite songs and always brings me comfort.  I keep coming back to this cover version of the song and I just appreciate how the Running Mates performed it. It’s a powerful song about making bad decisions and losing everything you love.

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Hurt by Nine Inch Nails, cover by Johnny Cash

This is an incredible cover of the Nine Inch Nails song.  It’s a bit dark but a powerful song.  Johnny Cash was suffering from autonomic neuropathy when he performed this song, which I deeply connect with as my 16 rounds of chemotherapy have given me peripheral neuropathy, causing numbness and pain in my hands and feet, and it’s too painful for me to play guitar anymore.

Johnny Cash’s performance altered the song’s feeling, which was originally about self-destruction and he made it feel more like a man looking back at his life at the very end.  Johnny Cash died a few months after recording this song, and I think everyone appreciates him putting his indelible stamp on this work of art.

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In Hell I’ll Be In Good Company by The Dead South

Another dark sort of song, but it’s so cheerfully done that I enjoy this song a lot, especially the perky banjo. I always seek to be good company, wherever I get to be in the end.

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I’m Still Here by Jim Rzeznik

I won’t listen anyway, you don’t know me
And I’ll never be what you want me to be

This song appeared in the Treasure Planet film that we watched about a thousand times when my children were young, and it was always my favorite part of the movie.  As a Goo Goo dolls fan I was instantly taken in by this brilliant Johnny Rzeznik performance.

It was an unlikely place to find a song about people trying to mold you into the person they need you to be, while ignoring the person who you want to be. It really hits me in the feels.

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Quiet by Milck

They may see that monster, they may run away
But I have to do this
I can’t keep quiet

I absolutely love this song since hearing it around the time of the 2017 Women’s March in DC, and it is perfect to follow I’m Still Here thematically. Maybe the best way to cure no one knowing who you really are, is to find your voice and tell your story.

We are so scared of being judged for being ourselves, that we stifle our voices. Perhaps I’m more scared that I will pass on to the Sky World and no one on earth will have really known me because I’ve kept quiet.

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Warrior by Aurora

My friend Ras recommended Teardrop by Aurora in the comments of this blog post, and I think it is incredibly beautiful and have added it to several playlists. But for some reason, for this playlist I found a strong chemotherapy-related connection with this song. Thanks, Ras!

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Easy by the Commodores

Everybody wants me to be
What they want me to be
I’m not happy when I try to fake it

In the cancer center there is often a piano player that comes in and plays show tunes and instrumental standards. It’s often sort of background music and in all the time I spent doing this, you would never know from the looks of all the cancer patients that anything moved them, EXCEPT this time he played “Easy” by the Commodores and a miraculous thing happened: many cancer patients of every conceivable age were tapping feet and mouthing the words, “easy like Sunday morning…” and it seemed like a peacefulness settled on the place. This was such a beautiful moment that this little tiny memory will be a treasure for me.

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Blackbird by Emma Stevens, sung in Mi’kmak

This is one of my favorite songs by The Beatles, and Emma Stevens’ hauntingly beautiful cover in Mi’kmak is beautiful.

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Volver a Comenzar by Cafe Tacvba

This song was included in the PS3 video game Little Big Planet on a level that required multi-player cooperation and quite a few hilarious attempts to finish.  It’s a wonderful song about wishing you could return to the beginning of your life and make up for all your worst mistakes.  I’ve imperfectly translated it into English on alternate lines below:

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Half Acre by Hem

So we carry every sadness with us
Every hour our hearts were broken
Every night the fear and darkness
Lay down with us

Sometimes in life we are dealt a lot of crappy hands. We can dwell forever on everything we have lost, our unfulfilled dreams, and situations we barely survived. But dwelling on the past would let the wounds bleed forever. It would lead to distrust and hopelessness. Somewhere out there is a half acre you call home, where you can heal your soul and come back, created anew.

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Dios De La Lluvia By Ultimo Del La Fila

God of the rain, have mercy
on the beasts and on me, poor mortal.

My sister brought me this album back from Spain when she was studying in Seville.  This track is such a beautiful prayer to bring us back to more beautiful days.

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Prodigal Son’s Prayer by Dierks Bentley

My sister wanted me to learn this song so I could perform it with her, with me on the guitar and her on the banjo. I always deeply identified with the Prodigal Son, I have lived my life my own way and I can’t say I necessarily chose the wisest path. The song keeps bringing me comfort during the chemotherapy.

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Losing My Religion by R.E.M.

Losing my religion is a southern expression essentially meaning, I’m at the end of my rope.  The song isn’t actually about losing one’s religion, though maybe in the context of cancer some people might give up their religion. Mine is alive and well still.  This is more a song about being ready to give up on a relationship that requires a lot of effort.  But this is one of my favorite songs and one of the first I learned to play on the mandolin. This song and its dramatic title wanted to be here on the playlist and it fits nicely with the theme so here it is.

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Never As Good As The First Time by Sade

The rose we remember
The thorns we forget

I don’t need an excuse to include any Sade song in a playlist, but this song volunteered for duty.  It’s definitely the case that chemotherapy gets worse and worse each time, so truly it’s never as good as the first time.  You’re never going to know what fate is going to blow your way.

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No Roots by Alice Merton

I like standing still, but that’s just a wishful plan

As a military brat who had to leave his friends every six months or few years, I deeply identify with this song. I am lucky that do have roots, however: I am fortunate to have a very large and loving family from upstate New York, and I treasure the few days a year when we get to visit them all.

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Stay by Rihanna with Mikky Ekko

Somehow this became one of my favorite songs. It always reminds me of my friend Katrina, who plays it often on the jukebox on pool league nights.

You always need to remember there are many reasons to stay. And I do hope I get to stay around for a while!

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Stay by Kygo with Maty Noyes

This is the second song in a row called Stay, how weird!  I love this piano version of the song, the vocals are more infused with emotion than in the album version. 

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Dust to Dust by The Civil Wars

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Like I’m Gonna Lose You by Meagan Trainor, cover by Jasmine Thompson.

My friend Kat once sent me a link to this astounding cover. It reminds me to cherish all the moments I spend with my family and friends, and to give them the very best of me I can manage.

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I’ll Follow You Into The Dark by Death Cab for Cutie, cover by Jaclyn Glenn & David Michael Frank

Fear is the heart of love

I’ve often thought this song is so tender and tragic, it amazes me that Ben Gibbard laid the track down in one take while in the middle of technical problems and it became one of the band’s enduring singles. It captures the depth of pain you feel sometimes when it occurs to you that someone you love could be gone forever from your life in an instant. I have a lot of dark thoughts about these kinds of fear of grief and loss, more so than I have about the possibility of my own passing. After the death of our daughter and after feeling decades of grief, at the prospect of feeling more grief I would selfishly much rather be the person who goes out first. It is an exercise of prayer to contemplate the meaning of 1 John 4:18, that perfect love drives out fear, though that would be a fear-of-God sort of fear rather than a fear of losing a loved one.

So my take-away is that we shouldn’t hold anything back, our hearts should be ever-trusting and open to love, and loss should never keep us from living, growing, and evolving, because we will hold each other again soon.

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Sky world by Theresa Bear Fox, cover by Teio Swathe

Theresa Bear Fox is a Mohawk musician who comes from the Akwesasne Mohawk reservation where my Mom was born. This version is in English, which is likely more accessible to readers. Do check out this link for the original version in the Mohawk language.

This song is written for people who are grieving, and it helps me cope better with chemotherapy somehow, to think of my daughter Maggie, uncles Greg and Bob and Eddie, aunts Sherrill and Joyce and Emily, cousins Allan and Mike, brother-in-law Jesse, and Grandparents Al and Lois and Alfred and Betty, and all my great-aunts and great-uncles in the Sky World.

I am made from the love of these people and their spirits and lessons will span the generations.

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Forever Autumn performed by Justin Hayward

I’ve loved Justin Hayward and the Moody Blues for as long as I can remember, but the love started in 6th grade in Mr. Carroll’s class in Huntington Beach, California when we read The War of the Worlds and afterwards, he played Jeff Wayne’s musical version for the class. I was instantly addicted to that album, and my favorite song was Forever Autumn. It was so forlorn and lost, and provoked such an emotional response that I always loved it. The sound of Justin Hayward’s voice led me to being a huge fan of The Moody Blues. A couple years ago, Justin Hayward performed at the Carolina Theater in Durham and I had to go. He performed Forever Autumn and it brought tears to my eyes. It was wonderful to see it performed live!

Throughout my life this song has comforted me during times of great loss, either death or the end of friendships and relationships. What makes us think that we have so much time? We really squander the most precious moments we have with people by taking them for granted. I wish I could spend all the rest of my moments with all those who are precious to me.

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The Heaven and the Sky by Millions Like Us

Songs don’t get much more obscure than this one. It’s been with me since my trusty Creative Labs Nomad was my first 6GB MP3 player.  I think they only printed about a dozen copies of this album, but it is a fantastic one. The title is kind of dark in the context of cancer, but it is what it is.  For some reason I find it comforting.

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Stairway to Heaven by Led Zeppelin, cover by Violet Orlandi

I’ve been following Violet Orlandi for years on YouTube and I always enjoy hearing her cover of probably the most famous Zeppelin song.

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Who Will Save Your Soul by Jewel

We’re so worried about saving our souls
Afraid that God will take His toll that we forget to begin

It seems to be a recurring theme here, but I do hope on the balance my good deeds will outweigh the trouble I’ve caused along the way.

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When I’m Gone performed by Iain MacKintosh

For much of my life I have treasured the songs and wit of the Scottish folk singer Iain MacKintosh.  This is one of the songs that begged to be on the playlist. It encourages me to treasure every moment in life as though it were my last.

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Time in a Bottle by Jim Croce

One of my favorite artists ever, I have been grooving to Jim Croce tunes since I was a kid and my parents often played all the albums on vinyl.  This is one of my mother’s favorite songs and it seems rather appropriate nowadays.

I was originally scheduled for my 2nd cancer surgery on September 8, 2022 but I had tickets to a concert at the Carolina Theater in Durham, where A.J. Croce performed some of his father’s songs. I would have had to ditch those tickets but the surgery was pushed back to September 16, 2022 and thankfully I got to attend that concert. It was bittersweet hearing those songs performed, especially Photographs and Memories, where a slideshow of Croce family pictures brought tears to my eyes. It was a moving performance. This song made it onto my playlist long before I knew about the concert though, I would never leave a Jim Croce song out of any playlist.

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The Riddle by Five For Fighting

This song was added to my chemo playlist by my oldest son Iain so that I could listen to it in the hospital.

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Happy Phantom by Tori Amos

The time is getting closer
Time to be a ghost
Every day we’re getting closer
The sun is getting dim
Will we pay for who we’ve been?

I have been a huge Tori Amos fan since the time of her first album. I remember once watching an episode of CSI: Miami, when the investigators looked at the songs on a victim’s phone and said something like, “obviously this belongs to a woman because the device is full of Tori Amos songs.” What a terrible assumption! My whole phone is overflowing with Tori Amos songs.

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Overkill by Colin Hay

Especially at night
I worry over situations
I know will be alright
Perhaps it’s just imagination

After chemotherapy and the dexamethasone steroids, I can’t get to sleep thinking of implications and complications, and this song always comes to mind when I am stricken by insomnia. I was lucky to see Colin Hay perform as an opening act for the Barenaked Ladies a few years back.

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One Day by Matisyahu

Sometimes I lay under the moon
And I thank God I’m breathin’
Then I pray don’t take me soon
‘Cause I am here for a reason

As a child I always hoped and prayed that the world would become an even better place over the course of my lifetime. I was so very wrong. I am heartbroken to see so much backsliding, strife, division, hatred and reckless conflict in the world, and lately I’m more comforted at the idea of passing away before it gets apocalyptically worse. But I have a deep hopeful spirit and I know things will be all right. This song is so hopeful, and I have always felt better after hearing it.

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Bull In A China Shop by Barenaked Ladies

I’m a public embarrassment
I’m a bottle of diet poison

The Barenaked Ladies are one of my top-favorite bands, and I often feel like this song perfectly fits me. 

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Ain’t No Rest for the Wicked by Cage The Elephant

Oh, no there ain’t no rest for the wicked
Until we close our eyes for good

Sometimes life goes so hard there isn’t time to rest when there are bills to pay and mouths to feed. I’m not sure how truly wicked I am, but maybe that’s why there isn’t any rest.

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Tom Ames’ Prayer by Robert Earl Keen

I ain’t askin’ for a miracle, Lord
Just a little bit o’ luck will do

I love Robert Earl Keen, I think I got turned onto his music hearing the song “Swervin’ In My Lane” on the radio on my morning commute. I’m somehow fascinated by the ways people pray to God. Some prayers sound like God is making a mistake and needs correction. Or like in the film It’s a Wonderful Life, maybe a huge number of people praying for the same person gets God’s attention and may warrant some intervention. There is a certain crass honesty in Tom Ames’ prayer.

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One Thing Leads To Another by The Fixx

This song made it onto the playlist because it’s fun and during a long cancer battle, one thing always leads to another.

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I Want A New Drug by Huey Lewis and the News

I have liked Huey Lewis and the News since my middle-school crush Cara introduced me to the band’s music, so it always makes me think fondly of her.  But when this song came up at random I realized with the chemotherapy, that I want a new drug that won’t make me sick, one that won’t keep me up at night or make me sleep all day.

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I Wanna Be Sedated by the Ramones

You can guess why this song was included merely from the title, but it really speaks to me during chemotherapy.  With my peripheral neuropathy, I have nerve pain in my fingers and toes so the line “I can’t control my fingers, I can’t control my toes” is so accurate it’s creepy.

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Morning Fog by Kate Bush

This song turns the mood of the playlist from dark and moody to light and positive. I have been a huge Kate Bush fan since I was a teenager, and Hounds of Love is my favorite of her albums.

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As I Lay Me Down by Sophie B. Hawkins 

Though I’m far away
I’ll whisper your name
Into the sky
And I will wake up happy

I love the romantic optimism of this song. Despite the hard times in this battle, I always wake up happy.

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Better by Regina Spektor

If you never say your name out loud to anyone
They can never ever call you by it

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Odds Are by The Barenaked Ladies

So get up, get up
Tell the bookie put a bet on “not a damn thing will go wrong”

This song is the most important song on this playlist. I love it, and it is so incredibly appropriate. It always makes me feel lighthearted and happy, like everything is going to probably be all right.  It also has a kick-ass music video.

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Closer To Fine by Indigo Girls

There’s more than one answer to these questions
Pointing me in a crooked line
The less I seek my source for some definitive
Closer I am to fine

I think sometimes I over-think everything, and this song reminds me to just live and love, persist in the moment, and find meaning and happiness there.

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The Blitzkrieg Bop by the Ramones

I often find myself singing this song to myself on the way to the cancer center for chemotherapy appointments. Most of the time even though I’m not looking forward to the side effects and symptoms, I’m all revved up and ready to go. I hop up on the table like a happy puppy… let’s go!

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Breathe by Michelle Branch

Breathe
Every little piece of me, you’ll see
Everything is alright
If I just breathe

Sometimes when things feel hopeless you just have to tell yourself to breathe.

I love Michelle Branch songs, it’s hard to believe most of them were written when she was a teenager. That’s when our angst is turned up to eleven, so it makes sense.

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Smile By Uncle Kracker

This is a song that always makes me smile, and even in a chemo infusion clinic the magic still works!

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Live Life Live Well by Chris de Burgh

Things will work out in the end
When you just live life, live well
Take your time, look after yourself
Give love, give well
The only way to get there is to start by loving yourself

I’ve loved the songs of Chris de Burgh ever since Little Bert Montroy played me Don’t Pay The Ferryman, but although I love that song it’s a bit too dark for this playlist.  This one is much more uplifting and hopeful.

Most everyone knows the song Lady in Red. I am grateful to Chris de Burgh because his lyrics for some of his best songs formed and inspired me to be a good mate, a good partner, and a good father.

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Ay Que Pesado by Mecano

When my sister returned from a year abroad in Seville, Spain she also brought me an album by the group Mecano and I loved their music instantly. I’ve tried to make another imperfect translation of this song. The song turns on the Spanish phrase qué pesado which can mean “how heavy,” “how boring,” or “how annoying” or possibly all three in this context. In any case, it’s funny how our mind focuses too much on grieving our losses and not enough on being thankful for all we have going for us. Don’t think too much about the past or the future, life is waiting.

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Happy by Pharrell Williams

Of course this song is included because it makes me happy and is a rare song that inspires me to dance.

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Don’t Worry Be Happy by  Bobby McFerrin

Another happy song! It’s a little bittersweet to see Robin Williams appear in the official video of this song. I spend a lot of time lately not worrying and being happy.

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Shake It by Metro Station

It’s not fair of the playlist to have gone totally in the direction of perky dance songs, especially in an chemo infusion clinic, but maybe getting the blood moving is the best way for the drugs to work.

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Uptown Funk by Mark Ronson

More uplifting groovy music! Someone at the pool hall loves this song and it plays on the jukebox almost every week at league night. It reminds me of the fun of hanging out with my friends and having a good time.

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Le Freak by C’est Chic

Growing up in the disco days, this song always grabbed my attention when it came on. It is a snapshot of my childhood and I remember the fun of grown-ups dancing and grooving to the music. I always thought it was a good day when the adults took a break from being so serious about everything.

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Superstition by Stevie Wonder

This is by far my favorite Stevie Wonder song, I think it is brilliant. When you believe in things you don’t understand, like chemotherapy drugs, then you suffer superstition. One day we’re going to beat the cancer thing and we will look back and shudder when we think what patients had to go through to beat it.

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Disco Inferno by the Trammps

Not the deepest philosophical song ever written, but you don’t need to think when you get down.

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Funkytown by Lipps Inc.

When we returned from Japan and lived in Norfolk, Virginia, we got to spend some quality time with my Aunt Emy who was in the Navy, stationed nearby. She took us to movies and for some reason this song always came on the radio on the way. We all loved it.

Since we moved around a lot in the Army, it was a special treat to get to spend any time with our extended family and we couldn’t spend enough time with our fun-loving aunt to make up for all the time we missed.

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Long Tall Sally by Rick James

I’m a fan of Rick James and this is one of my favorite songs.

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Super Freak by Rick James

Another one by Rick James, I know it’s not cool to have two in a row from the same artist in a playlist but these kind of want to be together.

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Hey Ya! by Outkast

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Get Lucky by Daft Punk with Pharrell Williams and Nile Rogers

This is a favorite song in our family but the kids once told me they were troubled by the lyrics when the robot-voice comes in and says, “We’ll rob a Mexican.” That just isn’t very nice. I explained that the Daft Punk voices are saying “We’re up all night to get lucky,” but now I can’t hear the lyrics any other way.

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I’m Sexy and I Know It by LMFAO 

This video is probably NSFW and in poor taste, but I love the enthusiasm of this song and its tongue-in-cheek approach to having a good time. I didn’t notice until just now that Wilmer Valderrama from NCIS is in the music video. Yep, I have a risqué side. Get used to it.

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I’m Too Sexy by Right Said Fred

It’s simply not possible to smile at this song and want to dance like no one’s watching. This is true even in a chemotherapy infusion clinic.

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Sex On Fire by Kings of Leon

I don’t think I’ll ever forget my friend Brandy singing this song at karaoke on Halloween, dressed as one of the PowerPuff girls. Well done! Permanent memory achieved!

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Hot Stuff by Donna Summer

This is one of the catchiest earworm songs I know from my childhood, and of course in modern days I can’t hear it without thinking of that wonderful scene in The Full Monty in the unemployment office. It’s one of my favorite movies. You do YOU, gents!

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Feel It Still by Portugal The Man

Another catchy tune I hear a lot in the pool hall every week, it’s hard not to dance to this tune.

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Hard To Handle by the Black Crowes

I love this catchy song and the confidence of the lyrics. The best way to hang on to love is to treat your partner better than anyone else possibly could.

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Cotton Eye Joe by Rednex

I love this classic tune dusted off in a high-energy style by Rednex.

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Jig of Life by Kate Bush

Never, never say goodbye
To my part of your life.
Oh no, no, no, no, no!
Never, never, never!
Never, never let me go!

Another amazing song by Kate Bush from her Hounds of Love album, it is especially appropriate for the chemotherapy setting and it practically begged to be included.

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It’s the End of the World As We Know It by R.E.M.

When one is feeling melodramatic, this catchy song always comes to mind. It is a perfect title for a chemo playlist, but despite its dark opinions it’s just too catchy to leave off the list.

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Bluesy Little Tune by the Asylum Street Spankers

This bluesy little tune
Playin’ all the time
Song that’s rollin’ through my head
Makin’ me feel fine

The Asylum Street Spankers are one of my favorite bands and I was lucky to see them several times in person before they disbanded. They are such a talented group but a lot of their songs are heavily NSFW. Not this one, though! It’s probably their cleanest song.

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Peaceful Easy Feeling by the Eagles

Another of my favorite bands, and even though the song is written about a lady, it’s especially nice to imagine that chemotherapy and surgery won’t let me down. I would have all my playlist songs be by the Eagles, but they are too dark and snarky on the whole for chemotherapy.

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Chicken Fried by Zac Brown Band

It’s funny how it’s the little things in life
That mean the most
Not where you live or what you drive
Or the price tag on your clothes
There’s no dollar sign on a piece of mind

You know you’re in the right place in life when you get excited about the little things, and you prefer them to more complicated pleasures. This song has its heart in the right place and I enjoy its lively delivery.

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Hold On Loosely by .38 Special

This is a catchy song with a good message of not smothering the one you love. It seems to me that lots of people are too insecure and possessive in their relationships when really they should be less lazy and never stop being the best romantic partner they can be.

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Carry On My Wayward Son by Kansas

I’m a huge Kansas fan but Dust In The Wind seems like it would be a downer on a chemotherapy playlist. This song is one of the most epic rock compositions ever made. And the message is right there out of the gate:

Carry on my wayward son
There’ll be peace when you are done
Lay your weary head to rest
Don’t you cry no more

Okay, maybe a little dark for the happy phase of the playlist. I like to think of the peacefulness that will come when I am happily past this battle.

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Dixieland Delight by Alabama

Another great band, and I realize that as a northerner transplanted into the south for 40 years or so, I have a lot of upbeat southern anthems in my playlist. I consider myself southern anyway: I was born in Aberdeen, Maryland at Kirk Army Hospital on the Aberdeen Proving Grounds. And even though my Carolina friends snort milk out their nose whenever I say it, that means I was born in the South.

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Dust In A Baggie by Billy Strings

In the last few years I’ve discovered Billy Strings and I enjoy his high-energy, very talented songwriting and performances. He wrote this song for a competition and I remember coming across a video of him performing it for friends, and immediately loving this song and his style.

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Dang Me by Roger Miller

I grew up listening to Roger Miller as early as I can remember, and loving every single song, his quirky lyrics and his contagious guitar style.

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Bad Bad Leroy Brown by Jim Croce

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Don’t Stop Believin’ by Journey

Another of my favorite bands, and I will not stop believin’.

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Blood Makes Noise by Suzanne Vega

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I Choose You by Sara Bareilles

This song marks a transition to the third section of my chemotherapy playlist, populated mostly with love songs. This is probably my favorite Sara Bareilles song, and the music video made me cry.

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A Thousand Miles by Vanessa Carlton

This song makes me vividly remember the angst you feel when the person you love is far away.

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Walking On Sunshine by Katrina and the Waves

This has been a favorite song of mine since I was in middle school, it so perfectly captures the weightless, exhilerating feeling of being in love.

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Stuck Like Glue by Sugarland

This song always gets me up on my feet and into the mood to move and dance. The music video for this song is sorta creepy-stalky in a cute perky way… but the lyrics of the song tell the real story. Spend every day rekindling your love and making it always fresh and new. Love is never meant to tarnish.

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What I Like About You by The Romantics

This is one of my all-time favorite songs, it energizes me and makes me super happy.

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On Top Of The World by Imagine Dragons

If you love somebody
Better tell them while they’re here ’cause
They may just run away from you

Don’t hesitate to tell everyone you love how you feel about them and why. Life is too short to leave anything out!

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Los Amantes by Mecano

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Just What I Needed (The Cars cover) by Punch Brothers

This is the most amazing acoustic cover of one of my favorite songs by The Cars.

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Iris by Goo Goo Dolls

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Little Things by Bobby Goldsboro

One of my prized possessions as a child was a little foldable, portable turntable set and one of my favorite records was a Bobby Goldsboro record. Songs like Voodoo Woman, Watching Bobby Grow, See The Funny Little Clown, and Little Things were my favorites. My other favorite records were by Roger Miller and Jim Croce. I would sit and listen to them over and over again.

Another song about keeping love fresh by never forgetting the little things!

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How Deep Is Your Love (Bee Gees Cover) by Mackenzie Johnson

Another sweet cover of one of the best Bee Gees songs.

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Gypsy by Suzanne Vega

Suzanne Vega wrote this song at the age of 16 for a fellow camp counselor and released it on her second album, Solitude Standing. I think the first time I ever heard it, it was my favorite song of all time and still might be. Songs like this formed a kind of romantic sweetness in my little mushy teenage brain.

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Asylum Street Blues by Asylum Street Spankers

Another of my favorites by the Asylum Street Spankers (lyrics unavailable).

Waiting For A Girl Like You by Foreigner

Another song I spent the 80s listening to again and again. It encouraged me to be patient and not to rush too quickly into love but instead to wait for the right person to come along.

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All I Want by Toad The Wet Sprocket

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Always Something There To Remind Me by Naked Eyes

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Every Breath You Take by The Police

I realize this song is about a stalker, and it’s not a love song. I wouldn’t play it at my wedding, but I still love the song so here it is.

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Come And Get Your Love by Redbone

I’ve loved this song for a long time since it was the only hit song by an American Indian band I had ever heard of. I loved the incorporation of native rhythms and vocalizations in a rock song! I was thrilled when it appeared on the Guardians of the Galaxy soundtrack, with such a compelling, diverse set of songs included in the film. So much love!

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Burning Love by Elvis Presley

You can’t have a bunch of love songs without this one included. Props to Lilo & Stitch for a healthy dose of Elvis, including this great song.

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Shape Of You by Ed Sheeran

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Sweet Pea by Amos Lee

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No Ordinary Love by Sade

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Creep by Radiohead

Okay, so it’s another great stalker song.

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Fidelity by Regina Spektor

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All The Love I Have Inside by Chris de Burgh

When I started high school and moved to Virginia, our stuff hadn’t arrived at the house yet so I was sleeping on the floor with only a few prized possessions in my room, and I was listening to my Chris de Burgh album The Getaway. I used to love listening to this song over and over, wondering if love was like this song. This song was a formative event for me and it’s the essence of how I love.

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Change The World by Eric Clapton

One of the sweetest love songs ever written!

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Photograph by Ed Sheeran

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It’s OK by Nightbirde

Suggested by my friend Chelsea, this beautiful song is made more bittersweet knowing that Nightbirde fought a protracted battle with cancer and moved so many people with her music during her lifetime.

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A Dozen Pounds of Trouble (Chemotherapy #40)

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My wife, youngest son JH and I had a lovely vacation to Cook Forest, PA more than a week ago, and I will talk more about that later; but in the last couple days of vacation and while visiting my parents and sister on the way home, my abdomen kept growing noticeably larger while my skin felt very tight and uncomfortable, especially after eating or drinking. I began eating a couple very small meals a day and though my weight was not changing, my abdomen was looking very distended. A weeklong back pain set in and I could not find a comfortable position for sleep because it was painful to sleep on either side, and sleeping on my back was killing me; I just stared at the ceiling and shifted my weight, while my cat Elsie circled me, slept under my armpit, cozied up to me, and I think she was worried. That, or perhaps she was just opportunistically getting all the pets of a lifetime from this poor insomniac sucker who was clearly awake to pay attention to her and nothing much else.

Putting on a happy face and secretly hoping I haven’t been impregnated by Alien triplets

I wondered aloud to my wife how anyone could deal with a huge belly, constant back pain, high blood pressure, a stomach that can hold only a handful of food, nausea, pelvic floor pressure, and skin that was stretched as tight as a drum, FOR AN ENTIRE WEEK — and she shot me a strange, sympathetic look, picked up on my implication and said, “I’m sure cancer is much worse than pregnancy.” It was very sweet of her to say, but after four pregnancies with the same symptoms for the better part of a year, and where her abdomen was also being violently kicked, I cannot even imagine being able to survive. I felt very guilty about complaining in her presence because of that. Don’t get me wrong, I still complained, I just felt guilty about it.

July 30: New Scan and Not Great News

I contacted my oncologist with my symptoms and they immediately moved up my next CT scan and lab blood work from August 11 to the next morning, July 30. The scan analysis was full of troubling news. First, an epicardiophrenic lymph node has grown to 8mm from the usual sort of 3mm size and is an indicator of advanced cancer metastasis to a location between the diaphragm and the bottom of the heart. The scan also found two tumors in my left lung, 6mm in the upper lung and 7mm in the lower lung, and one 5mm tumor in the lower right lung, and a number of smaller tumors forming. Liver tumors have grown to 2.6cm from 2.1cm and to 3.0cm from 2.6cm. There are new tumors in the omentum.

The best news was that my platelets are now 117, and anything above 100 qualifies me to get on the waiting list for two different studies of promising new drugs that target my tumor’s KRAS mutation. There is a study in Virginia of a similar drug that may be approved by the FDA next year, as its preliminary data is very promising (but many other people are trying desperately to get into that study).

In the meantime, I have decided to step back to the FOLFIRI+BEV intravenous chemotherapy, which has some of the worst side effects to endure, but when I was on it a year ago it seemed to do the best job of arresting the tumor growth. It can buy me time to get into a study with a better drug. It wouldn’t be the sort of time I would spend cheerfully doing cartwheels in rolling fields of daisies; it would be more like a protracted battle with constant tummyaches and explosive diarrhea, but at this point any time I can spend with family and friends is precious to me.

So the chemo infusions were scheduled for a week later on August 6. I did not think I was going to make it until then because of the pressure and pain of the abdominal swelling and ascites — it felt like I was going to burst like Mr. Creosote after a wafer-thin mint (DO NOT Google this if you don’t know what it is!).

They checked out my abdomen, heartbeat, and breathing, and noted no bowel sounds so I was instructed to take a couple Colace each day to keep things moving. Then I was scheduled for a paracentesis procedure at the radiology center on Monday August 5th. In this procedure they poke a needle and tube through your abdomen and peritoneal sac to drain off the fluid, which is called ascites. This fluid can accumulate in your abdomen due to liver failure, cancer, heart failure, or pancreatitis to name only a few. I asked if it was easier than a liver biopsy and my oncologist assured me it was much, much easier to tolerate. I didn’t really care though, at this point I would endure just about anything for one night of comfortable rest.

The weekend of waiting was difficult. I drank very little, ate very little, and that kept me at a comfortable level of fullness, but the dehydration caused me a lot of foot and leg cramps. I got spiking high blood pressures, tachycardia and some chest pressure, so I took an extra metoprolol as my cardiologist advised me to do with the previous chemo regimen spiking my blood pressure. There was so much pressure on my pelvic floor that all my functions down there had no idea what was going on, it was awful. The weekend was a write-off because I sat uncomfortably in a recliner for several days. And I had so much stuff I wanted to do. So frustrating and disappointing!

August 5: The Paracentesis

I’m not just putting on a happy face here — I am absolutely THRILLED to get impaled by a needle at this point.

I’d like to say I woke up on Monday with a spring in my step, excited to get this procedure over with — and I was, but the truth is I didn’t wake up that morning, I was already awake because I barely got more than an hour of sleep the night before.

We went to the radiology clinic and nurse Robert was the most amazing guy ever. He was instantly likeable, put me at ease in seconds, answered a handful of my pressing worries, and filled me in on every detail of the procedure. No surprises like in my liver biopsy. I leaped up on the bed like a golden retriever getting treats, tail wagging! I really enjoyed chatting with the nurse and asking him questions about his military service. Such a great guy! Although I wish I never had to go through this again, I look forward to maybe seeing him again, probably in a few more weeks, sadly.

The doctor came and introduced himself, and they filled a syringe with a concerning dose of lidocaine and then buffered it with sodium bicarbonate to make it burn less. The doctor used an ultrasound with VERY cold gel to find just the right spot to go in, then cleaned the whole area with chlorhexidine. Another double-check with the ultrasound, and he warned me there would be about ten seconds of burning as the lidocaine was introduced. Honestly, I barely even felt the stick of the needle because he was injecting as he went and numbing it all very well. All I felt was a deep disturbing pressure, a little pause, and then a much more intense, deeper feeling, and the doctor said, “All done!”

I asked, “so now we do the tube?”

“Nope, it’s in there already!” he replied, and they hooked up a liter bottle to the tube and the draining began. It was a sort of cranberry sort of color and was filling the bottle at a fair clip, so they pinched off the tube after one liter and attached another bottle. When that bottle was about halfway full, my back pain melted away and vanished. It was the kind of miracle you ring up the Vatican and let them know about. After half the third bottle was full, I no longer had pain on the sides of my abdomen above the belt line.

In this way, FIVE LITERS got removed, though you have to leave some in there or your body rebounds and just refills it, so it wasn’t the full amount. They withdrew the tube, patched me up and in a few minutes I was on my way home, feeling so much lighter and I could see my shoes again!!

Feeling great after losing 12 lbs of fluid in less than an hour! Personal trainers HATE this trick!

I still have some discomfort as the puncture area heals, and I can’t immerse myself in water or take a bath for 10 days, but what a tiny price to pay for feeling so much better!! I was pretty absolutely wiped out with fatigue though, and immediately took a “nap” that involved many hours of catching up on sleep. I gained a little bit of appetite and had one cheese enchilada for my only meal of the day. My weight was 183.5lbs afterward, and 195.3lbs the day before.

August 6: Chemotherapy Round #40

It was another full day at the cancer center, starting with the lab work that showed my platelets are up to 125. I had an oncology visit afterwards where I had to make the call as to whether I wanted to go through with the chemotherapy, and sign consent forms. The pharmacy was slow that day so we spent a lot of time in the infusion clinic waiting room. Finally we got a beautiful room with a big window, where we could watch the darkening sky and then the deluge of rain from the edges of storm Debby. Nurse Isabel was so accommodating and friendly, and brought me a heated blanket to keep warm. My wife even got a recliner she could rest in, and I think we both took a few naps while the infusion went forward.

Back to listening to my Chemotherapy Playlist in the infusion clinic

The first part of the infusion is the administration of pre-meds Zofran and Decadron so I don’t decorate the infusion clinic with my stomach contents during the infusion. After a 30-minute wait, I got a little bump of Atropine and then the first chemotherapy drug, Irinotecan, was infused over more than an hour. This is the drug people call “I run to the can” and they are NOT kidding about that very apropos moniker.

Next was the Bevacizumab, it’s an immune system booster to help your system identify cancer cells and eliminate them, particularly that annoying metastasizing circulating cancer that ends up complicating things by spreading the love throughout your system.

When that was finished, I was hooked up to the 5-Fluouroracil football pump, which stays in a bag around my neck for the next 46 hours. I have to be home on Thursday for it to be unplugged from my port, my port flushed with saline and heparin, and then I am free!

After that, I hadn’t eaten all day and the only thing my stomach was craving was cheese and broccoli soup for some weird reason, so we picked some up with a soup & sandwich deal at… where else? Potbelly sandwich shop. I devoured the soup and less enthusiastically ate the sandwich. My stomach is still quite small so it’s still unpleasant to eat.

Now I’m editing this blog post after midnight because the steroids are keeping me from sleeping. ALL I WANT IS SOME FREAKING GOOD SLEEP. PLEEEEEASE!!!

July 20: Cook Forest Vacation

And now for something more pleasant and fun. I went with my wife and youngest son JH to Cook Forest PA for a week. We do this pretty much every year, and it’s a lovely time to join my mother-in-law Grandma K’s siblings for an annual family reunion. The forest itself is a state park and it seems to repel cell phone signals, so the vacation is always a nice time to be unplugged for a little while.

After weeks of triple-digit temperatures from hell back home in the Carolinas, it was such a relief to find days between 70 and 78 degrees, and cool nights.

We left town after work on Friday, though we left a bit late owing to a torrential downpour and thunderstorm that prevented us from packing the stuff into the car unless we wanted it all to be soaking wet.

I had a fantasy of visiting the Horseshoe Curve near Altoona on Saturday on the way to Cook Forest, but we ended up leaving a bit too late and hitting too much traffic to get there on time. Instead the GPS took us up quite a lot of backroads and straight through Punxsutawny PA. It’s such a cute town with statues of groundhogs everywhere, including a Wendy’s groundhog:

There is a Statue of Liberty groundhog, and too many to mention:

We stopped at the town square on Main Street and posed for the camera:

Posing at the town square in Punxsutawney PA

Some hours later we got to our hotel in Clarion. It’s probably cheaper than a cabin in the forest and has air conditioning and free breakfast! I liked this hotel, it was very nice and had an indoor pool:

Our hotel in Clarion

We were hungry for dinner and went to the main street of Clarion PA at dusk:

Main Street, Clarion PA, at dusk.

We found ourselves at the Clarion River Brewing Company and had a wonderful meal there. I had a roasted tomato soup and the Cuban sandwich, with honey ham, pulled pork, swiss cheese, dill pickles, and Heidelberg mustard on sourdough bread, very tasty! JH had the Cajun Chicken Alfredo, and my wife had the Fire-Grilled Salmon and salad.

I conned my wife into getting a flight of four beers so I could have a little taste of each one. We had the Yeastie Boys, Horse Thief, The One That Got Away, and Ginger? I Pearly Know Her. She loved the Pear Ginger Cider and the Hefewiezen, I was more partial to the nitro stout and the English Mild. I was quite sad I am not able to have more than a taste of the beers, what with my liver tumors, but it was a nice treat to have that taste.

The Clarion River Brewing Company list of available brews.

Later that week, in Cook Forest my wife and son went on a horseback trail ride. It is beautiful in the forest because the canopy on the old-growth trees is high, there is a lot of shade on the trails, and there are beautiful ferns and mosses growing on the forest floor.

In the meantime, I kicked back in some rocking chairs on the lovely porch at the horse farm office, and did a little reading. I admired the pragmatic way the office roof was framed, locally milled wood of varying lengths were put to use in sections according to length and there were odd corners that stuck out, like someone either didn’t want to cut the rafters or didn’t want to waste any wood. And of course a poster of John Wayne stared out from the window. I’ve never been a big fan of self-professed white supremacist, racist John Wayne and his awful comments about native Americans being greedy and not wanting to “share” their land with settlers. It’s not called sharing when you displace people, march them to their deaths and steal what is theirs at gunpoint.

I think that a little brotherhood of mankind, love, the actual teachings of Christ (as distinct from the moral code of so-called ‘Christians’), sharing, mutual teaching, storytelling, trade, and understanding would have worked just fine… but again and again in history, we are lazy and take a simplistic, monolithic view of a tribe, or a religion, or a race and all its people get painted with the same brush. To avoid that, we have to understand all of the individual people and their stories, their choices and motivations and that is hard work. No one ever said that loving our fellow man was easy. It is easier to jump to the conclusion that the violence a lone person causes becomes the political position of every single person who is like our enemy. And suddenly, we have transformed one enemy into thousands, or hundreds of thousands, or millions.

It struck me as ironic that this sign was nailed to the wall next to the office with John Wayne. It says, “Turn in your weapons. The government will take care of you.”

I think it isn’t good for our hearts to hate everyone of a particular race, or gender, or orientation, or national origin, or religion. I have a song in my chemo playlist called Manifesto by Nahko Bear and Medicine for the People, and I often recite the chorus in my prayers when world events make me angry:

Don’t waste your hate
Rather, gather and create
Be of service, be a sensible person
Use your words and don’t be nervous
You can do this, you’ve got purpose
Find your medicine and use it

We joined the family later in the evening at the Cook Forest Fun Park, there is a pavilion there that the families that rent cabins there can use, so we gather there for nice potluck dinners. I made a couple things for various days like some yummy guacamole, and pimento cheese from scratch. We brought some pies for dessert.

The Fun Park has a mini-golf course, water slides, and go-carts and is located just outside of the Cook Forest State Park.
Dinners are served buffet-style and there is an unbelievable amount of food contributed, it is like Thanksgiving in July!
The newest addition to the family, only two months old, little M being held by cousin K and her daughter G.

One of the most delightful surprises of the trip was getting to see the newest baby in the family! Her parents flew all the way from the western United States with a 2-month-old to dazzle us with her charm and adorable cuteness. She was held and loved on almost constantly during her visit. Little M’s is a miracle baby and very lucky indeed since her parents are incredibly delightful, warm and intelligent and I just know she will be the same way — so many generations of wonderful people led up to this amazing new person!

Campfire songs at the pavilion after dinner, one of the most special treats as Uncle J has a phenomenal repertoire of great songs in his head and everyone sings along!

The Abandoned Clarion Railroad Tunnel

I like to keep my eyes open for interesting abandoned places, and noticed some months ago that there was one located not far from our hotel, south of Clarion PA. It’s not really easy to find but quite rewarding when you do. We set out one morning and parked at a trailhead nearby, then hiked down to where the old railroad trestles were located. Finding the tunnel should just be lining up the trestles and following a straight line, right?

Piney Trail Head Parking Area

We found the first stone pier in the woods, and apparently Spider-Man climbed up there with a spray can. How do these graffiti artists climb so well?

After crossing the river and scrambling up a hill, you can see the trestle piers all lined up and pointing the way. When you turn 180 degrees and look into the woods, you catch your first glimpse of the abandoned tunnel!

The concrete structure that surrounds and supports the opening of tunnels had long since collapsed and left rubble everywhere. There are perhaps 10 feet of rock and dirt covering the original rail bed.

One interesting thing in the picture above is that the long exposure captured the dripping water and made these three creepy-looking vertical water columns at the left side of the tunnel. They look like ghost lights flying up to the ceiling. The brickwork supporting the tunnel is impressive.

When you get to the brickwork you look down about 10 feet to a water-filled rail bed and if you have a set of Wellington boots or the like, you can trek all the way down and check out the rotting trestle on the other side that goes over the Clarion River.

Looking out from the tunnel at JH and the old rail bed.

Me and JH posing in front of the tunnel
There is a concrete retaining wall by the road that essentially marks the spot

We left the Clarion tunnel and took some gravel backroads looking to see if we could catch a glimpse of the old wooden trestle from the road. The woods were just too thick to see through, I think you would have to hike down there from the other side or kayak down the river to see it.

We ran into this amusing collection of signs on our way to our next stop, Tionesta. My wife’s great-grandfather lived for a small time in that town, and it has a couple of interesting sights to check out.

Funny Roadside Signs. “Good food / lousy parking” and “Too hot to keep changing sign. Sin bad. Jesus good.”

The Nebraska Bridge

On the way to Tionesta PA, we stopped at a bridge that is often partially underwater during rainstorms and high water. The water was low so it didn’t look as cool, but it is a fine bridge nonetheless, built sturdily enough to resist years and years of high water.

The town of Nebraska, Pennsylvania came into being in 1827, and in 1848 the town was named as Ford and Lacy Mills or Lacytown. In 1855 a post office was established and the town was named Nebraska. The town had stores, lumbering mills, black smiths, churches, hotels, and other homesteads. All which were torn down in 1940 when the Tionesta dam was built and the valley was flooded. 

Here we’re approaching the Nebraska Bridge. There is a boat ramp to the left of it, and the old town of Nebraska was off to the right.

You can barely see, but in the distance is a fawn with half a tail, slogging through the mudbank. The helpful fisherman on the bridge told us he’s seen a couple like this, that coyotes try and grab them when they’re sleeping and the lucky ones only lose a tail.

The friendly fisherman left soon after we arrived; it didn’t look like he had any luck except for a little conversation.

Here I’m posing on the bridge with JH. I’m starting to develop a bigger tummy by this time, and it isn’t just the Hershey’s White House Cherry ice cream scoop I ate at the Cook Forest Fun park the day before. Cherry ice cream is my favorite! I think. Maybe any ice cream is my favorite. I’m not sure. A lot of times when I’m staring out into space and someone asks me what I’m thinking about, I almost always say, “ice cream!”

The Ersatz Lighthouse Park in Tionesta PA

I wanted to visit Tionesta mostly out of puzzled curiosity, in order to answer the question: why is there a lighthouse on an island in the Allegheny River? The river couldn’t hold a craft larger than a Jon boat or a pontoon boat at best, and there aren’t any dangerous rocks to wreck your vessels on. And so here it is, the Sherman Memorial Lighthouse:

A plaque to the left gives you the skinny on the lighthouse. Groundbreaking was on April 24, 2003. It is owned by the J. Jack and Grace Sherman Family. It was built as a beneficial landmark for the Tionesta community and to serve as a place to preserve the heritage of the Sherman family. The lighthouse is one of four in Pennsylvania. The other three are on Lake Erie (where it might actually make sense to have them). The lighthouse is 75ft high and 16ft in diameter. It consists of six floors and a basement. It has 76 steps spiraling up its center. The rotating light was installed November 10, 2004. The lighthouse was struck by lightning on August 26, 2003. The lantern room is 24 feet tall to the top. At the time of it’s [sic] commemoration on September 17, 2006, it displayed 280 replica lighthouses.

Lighthouse Island has a replica Statue of Liberty and it is chock full of patriotic decorations, sculptures, statues, and the like. There is even a chapel where we contemplated getting married again, all the while guarded over by a huge bald eagle sculpture:

Unfortunately, the door was not actually a functioning door, just a sort of model door that didn’t open. A short walk revealed that they were doing some yard work that day and had left the side door open, so I went to check it out. I expected a “here is the chapel, here is the steeple, open the side door and see all the people” sort of situation but instead noticed this:

The Chapel is just someone’s very ornamental tool shed. I think I could get behind a religion devoted to tools, so this is OK. Next I rang the Freedom bell. It was a very loud, solid bell for a tiny little lighthouse island, but that could be really handy for calling everyone off the river the next time a hurricane pulls up to Lighthouse Island.

Next up was the Freedom Memorial, dedicated to the loving memory of Fallen Hero. I liked how there was a bench for each branch of the armed forces: army, navy, air force, marines. No mention of the Space Force, but they could add two more benches, one for the Space Force and one for the Coast Guard I think. That would be cool.

After a nice walk around the island we were getting hungry for lunch so we went to see if Tionesta had any places to catch a lunch. It was pretty sparse except for a pizza place, which is pretty high carb so we skipped that. But the main street of Tionesta had a cute little art park where vendors had about a dozen little shops to sell their wares. See if you can find the sasquatch in the next photo:

We drove a dozen miles out of town and saw on Google Maps there was a restaurant bar called the Seldom Inn Restaurant. Sadly, it seemed as though the staff were, in fact, seldom in, because it was closed.

Instead, we had lunch at the Trail’s End Restaurant in Cooksburg PA. It was a nice homey, family-run restaurant with friendly staff — except for the ominous little sign in the entryway warning you that they are conservative Republicans and if you don’t like what you hear you can kiss their ass and go someplace else. I paraphrase, but I caught their meaning. Everything’s cool… I’m secure in my manhood.

I had a prime rib sandwich but was beginning to notice my stomach couldn’t hold more than half a meal, and my belly was starting to really get poochy and tight. I hadn’t realized yet what a trouble that would be…

Anyway, it was a little amusing that by the end of the meal some of the owners’ friends and family members showed up and hung out in the kitchen doorway discussing Biden dropping out of the presidential race, among other topics, and I felt like the shocking entryway sign was a fine way of keeping the peace with the customers.

Looking for some Wild Elk in Benezette PA (Elk County)

After 6 days in Cook Forest we left on Friday morning to meander down to Virginia to visit my parents and sister. I was hoping to see that horseshoe curve near Altoona but we got a little sidetracked looking for Elk in Benezette PA. On the way there we passed through the town of Weedville, PA, population 565, which had a little post office:

In addition to a post office, there was The Church of Cannabis Sativa and the Camp Sweetleaf store of locally sourced cannabis products and gifts. Ohhhhhh, WEEDVILLE. I get it!

We were looking for a place called Woodring Farm in Benezette but there was a big visitor center and we stopped to check it out. There was a big Elk Festival setting up for the weekend. One vendor was selling hickory syrup. I’ve heard of maple syrup but hickory syrup? Cool. He didn’t have any stock set up yet, or a way to sell it a day early so I never got to try any. In any case, we poked around the museum area and saw the lovely elk in the photo below.

Spoiler alert: this was the only Elk we saw in Elk County. We did see turkeys, a deer, and a snake so that was exciting. It was still a neat detour and hike, because the visitor center told us how to get to Woodring Farm:

Woodring Farm Sign

The visitor center also had signs warning hikers to keep their eyes peeled for rattlesnakes. Yikes! So my eyes caught this little guy peeking out of the grass. He was cute. I’m no expert at nope ropes, so I can’t tell you what kind of snake he was, just that I kept my distance.

Snake peeking out at Woodring Farm Benezette PA

One of the stops on the hiking trail was an apple orchard, where some lucky photographer hit the Elk jackpot:

There was a little platform where you could sit and watch the lovely hills all day. Simply beautiful:

Virginia and Back Home Again

We used up all the time hiking so I never got to see the Horseshoe Curve, but we made it to Virginia in time to have dinner with my parents, sister, and brother-in-law JD at my favorite restaurant, Kilroy’s. I barely got to the halfway point on my dinner and couldn’t finish getting down more than half of my drink. This was the first of my mostly-sleepless nights, and the start of my back pain being a constant 24/7 thing, so to let my wife sleep I went upstairs and rested in my dad’s recliner, unable to sleep. At about 2am my father came out to check on me. But since he didn’t have his hearing aids in, and neither of us knows sign language, he went back to bed just as mystified as when he left it.

On Saturday we had a nice visit with the family and after watching the southbound I-95 traffic on Waze, all the accidents seemed to clear up around 6pm and we left for home. I stopped eating on Saturday, except for a little grazing on food here and there, because I’d figured out my tummy was much more tolerable.

So we’re all caught up… the next day I went to my paracentesis and here we are! Thanks for making it all the way to the end!!!

Running Short on Options (Chemotherapy #39)

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It has been such a long time since I have written an update to the blog. When last I wrote, I was about to leave for the big Amtrak Zephyr trip and trust me, I will post about that trip. It was absolutely wonderful. I have been organizing and editing photos and writing text in between so all the non-TLDR types can spend time sharing in it. I am so grateful that I was able to have that experience and it was all I ever hoped for and more! I am so grateful to everyone who made it possible, and not a day goes by that I don’t think back on it, or talk about it with people. Even almost three months later it continues to bring me smiles and joy.

And right now it is good to have a bucket of smiles and joy that I can draw from when I need it. Despite keeping up my usual optimistic cheer, some cracks are beginning to form in the hopefulness foundation. My general day-to-day attitude is sunny though, and full of gratefulness at each new day that dawns. The darker bits of my odd sense of humor bleed through sometimes, but I don’t like the worry that crosses people’s faces so I try to scale it back a bit.

Medically, the journey grows ever more discouraging. I had a CT scan on June 18 to assess the progress of the most recent chemotherapy drug, Fruzaqla. I started taking Fruzaqla the week after the Zephyr trip, on April 23, and it was only recently approved by the FDA in November 2023. The main goal of the drug can’t be classified as any sort of miracle cure; it is the sort of drug developed to try and arrest or slow down the growth of Stage IV cancer. For many people it gives you some additional months of time. Despite its modest objective, it is by far the most expensive drug of them all, costing about $1,000 per day it is taken. I took it for 21 days, had 7 days off, then took it for 21 more days. Then we did the CT scan to see if it had any appreciable effect.

At first my oncologist said there were a few millimeters of growth in the index tumors that we are watching the most closely, so it sounded like the chemotherapy was doing its job and we decided to continue with the drug despite its horrible side effects.

And the side effects were indeed horrible. A few days into taking the drug I got very sick with a wet, productive cough and fever. I was given tests for COVID and the flu, and thankfully it was neither of those things, possibly just a side effect of the drug or an infection my poor struggling immune system couldn’t keep ahead of. I was instructed to hold off on taking the chemo and see if things improved. On day 4 of being sick I was coughing up tons of gunk to the point that my throat, nose, ribs and core muscles were burning with pain, I was getting constantly dehydrated from a full-scale revolution going on in my GI tract, and I got so weak I couldn’t get myself out of my recliner without falling backwards back into the chair. I realized with a dread seriousness on Sunday night, that I was not going to survive whatever this was without extreme measures.

On Monday morning, I woke up resolved to call 911 and go to the hospital. My oncologist’s PA called me at that very moment and we chatted about how dire things were, and she put me on a regimen of two different antibiotics. I was hydrating like crazy and I was feeling some improvement as quickly as six hours after taking the antibiotics. I weighed myself, and had lost 16 pounds. A couple more days and I was feeling more like my usual self, and we bravely restarted the chemotherapy and watched carefully. After finishing the antibiotics, I realized I had a weird aversion to meat: the thought of eating pork, beef, lamb, and chicken just didn’t appeal to me. It didn’t make me want to throw up, it just didn’t seem like food that human beings should be eating. This completely gutted my keto diet. The course of antibiotics also left me with what seemed like a complete inability to retain and digest food. About an hour after eating everything just went right through me. I ate a lot of yogurt, drank kefir, took probiotics, and fell back to something like a BRAT diet (bananas, rice, applesauce, and toast), but since those are entirely carbohydrates I took to eating bland foods with fiber. I had bread–which after being on a keto diet was just nasty–high fiber fruits like raspberries and blueberries, nuts, cauliflower and broccoli–sans brussels sprouts, which also did not appeal to me–and fats like cottage cheese, cheddar, goat cheese, parmesan slices, sour cream (yes, eaten with a spoon). I also had eggs for protein, since my GI system thankfully declared eggs as nihil obstat — so, deviled eggs without spice, french omelettes, hard-boiled eggs, and ajitsuke tamago.

The first big side effect of Fruzaqla is that I almost immediately lost my voice. I ended up with a fragile, quiet, hoarse sort of goose-speak that stayed with me until the day after I stopped taking the chemo for my 7-day rest period. The most horrible side effect was that my blood pressure went up from 112/62 to 178/96 and gave me headaches that felt like I was going to have a stroke at any moment. I started having chest pains, like an invisible finger was being pressed against my ribs quite hard. I grew sensitive to bright light (which still hasn’t completely abated), so whenever I went outside or was exposed to bright lighting I developed a pain in the gooey gel of my eyeballs that was intolerable and distracting because I could hardly think about anything else. I was also more fatigued than usual, and more fatigued than I ever remember being: after only a couple hours of sitting up in my chair, I often involuntarily fell asleep for a half hour or so, and after coming home from work I often slept for hours in the recliner, only to wake up refreshed and unable to sleep again for a few hours. Also after supporting my upper body in my chair at work, after a few hours my lower ribs and core muscles ached like I had just run ten miles. My liver transitioned to causing me almost constant low-level pain and discomfort. My feet grew very painful and I picked up some opportunistic infections that made it very painful to walk, especially up and down stairs.

And finally right after my anniversary, on May 23 I got a 7-day break from the chemo and I suddenly had energy! My core pain, foot pain, muscle aches, and fatigue mostly went away! It started to become quite obvious which [quite tolerable] symptoms were probably the cancer and which [horrible annoying] symptoms were the chemo. I decided on May 28th that this was the worst chemo of all of them. Worse even than irinotecan? Maybe. You see, the difference between being loaded up to bursting with a bag of IV chemo that felt like a caustic river of poison and a tiny one-a-day chemo pill is that at least with the bolus of chemo you suffer but every day afterwards is better. The Fruzaqla was quite the opposite: every day worse than the one before, and you find yourself eyeing day 21 on the calendar and wondering if you can make it. It’s a sword of Damocles sort of situation because you feel like any day that single strand of horse hair might break and you will suffer a sudden and fatal blow.

Luckily after a consult with my cardiologist, my heart medications were adjusted to help my blood pressure come down to not an especially good level, but enough to improve the headaches and feeling like a stroke was imminent. This enabled me to soldier on and take a second round of Fruzaqla and though it wasn’t at all pretty, I got through it.

The Actual CT Scan Results

So a couple days after the June 18 CT scan and doctor’s visit where we decided to continue a couple more cycles and follow up with another CT scan, I was able to access the CT scan analysis report on the MyChart application and I was a little shocked at what I was reading. And what I was reading was not particularly good.

First of all, my carcinoembryonic antigen (CEA) levels were now at 288.5. If you plan on living to retirement age, you had best hope that the level is under 2.5. This is almost doubled from the level on May 7.

A couple tumors in my liver increased in size. A tumor in the left hepatic lobe grew from 22m to 26 mm, and one in the posterior right hepatic lobe grew from 15mm to 21 mm. In the photos below, it looks alarmingly as though there are new tumors present but they represent small tumors that were evident in higher or lower slices and have grown into the slice you see.

Left Hepatic Lobe 06/18
Left Hepatic Lobe 03/18
Right Hepatic Lobe 06/18
Right Hepatic Lobe 03/18

The tumor on my peritoneum is probably the biggest concern as it can begin to leak lymphatic fluid into my abdomen, which would need to be drained if it got to be a large amount. The peritoneal tumor increased in size from 12mm to 21mm, which is a substantial 75% increase in diameter.

Peritoneal Tumor 06/18
Peritoneal Tumor 03/18

In my last visit with the oncologist a couple weeks ago, I told him I felt the chemo wasn’t working well enough to justify the unpleasant and potentially dangerous side effects. My liver is quite overstressed at this point, my bilirubin levels are increasing, my blood platelets are going down, and my liver numbers are going up. He agreed with this decision and we discontinued the Fruzaqla chemotherapy. That is the last FDA-approved treatment available to me, unless we want to pursue dusting off some decades-old IV chemotherapies that aren’t likely to help much.

It’s discouraging news, but for some reason it hasn’t gotten me down like I thought it would. It’s lit a little fire under me to make sure I get some legal affairs in order, but emotionally I feel pretty solid. I’m going to keep on driving:

Good News, X-Men… I’m a Mutant!

Or at least, my cancer is. But this is how good comic book origin stories get started!

My tumors have been genetically sequenced a couple times a year so that the most effective therapies can be prioritized. That testing found that I have a mutation called KRAS. Cancer cells with KRAS mutations are fairly resistant to chemotherapy and immunotherapy, and they grow aggressively. For my type of cancer, the median survival rate of people with KRAS mutations is about 2 years. I’m currently at almost 3 years, which is pretty respectable.

There are two promising studies of competing drugs that target the KRAS mutation and use it to deliver targeted chemotherapy to any cells presenting KRAS. In order for me to be considered for the study, my platelets need to be above 100. When I took my 7-day break from the last round of Fruzaqla my platelets were 44. Two weeks ago they were 67. If my platelet levels can bounce back, I may be eligible to try this experimental drug. This is another reason why I’ve decided to stop taking chemotherapy at this time.

Apparently it’s tricky to get those platelets produced: rest and exercise help, but eating leafy greens and iron-rich foods helps. Also the same kinds of meats I’ve had an aversion to lately, I’m learning to choke down. Also liver! Hmm.

So let’s cross our fingers and hope Plan B works out!

In the meantime, I’m taking advantage of having energy again and trying to venture out and enjoy life. I have been so fatigued the last few months from the chemotherapy, that I haven’t left home on exciting trips in a while. I’ve been doing fun things around home when I have the energy. Here’s the sort of stuff I’ve been up to:

Northern Virginia and Richmond

I went with my oldest and youngest sons to Virginia to visit my parents and sister. We had great food and chilled out for the weekend. It was nice to just unplug and relax. I’m always so stressed on weekends because I don’t feel like I have so many of them left, so I have a big checklist of things I’m trying to accomplish. But for months I haven’t had the energy to check off a lot of those items and it disappoints me. But being surrounded by family, love, and stories makes me forget everything and just live in the moment, which is also good for me.

Mom, Dad and Both Kids together like old times

I guess that a new part of our family ritual is that we talk about all our medical problems, and everyone has got them. I probably wasn’t paying attention to this because I never noticed it when I was a kid, but it seems like a lot of gab by people over 50 is spent sharing doctor experiences and medical horror stories. I don’t remember us ever talking so darned much about poop! Well, except when I was a toddler. We come into this world as babies needing careful care and toilet training, then we live, love, and dance around for a few decades and then we need careful care and toilet training again… and THAT is the circle of life I think.

I got to help with technical issues on my sister’s quilting machine. Pictured above is a seriously cool piece of hardware for stitching the whole quilt together with the backing and all the layers. We did all this while dinner was cooking, and what a great dinner it was! We called it “suitcase salmon” because my sister brought a bunch of frozen wild-caught salmon home from Alaska on a recent flight and it was sort of funny to think of all that fishy cargo. Don’t knock it though, it was incredible salmon:

Delicious Wild-Caught Alaskan Suitcase Salmon

We also got to meet my sister’s new kitten, Princess Daisy Moonbeam G. She was so adorable, we all covered her in welcoming kisses and attention.

Princess Daisy Moonbeam G.

I got to have lunch and dinner with my friend Bick in Richmond to celebrate my birthday, and we had Cuban roast pork for lunch and NY Strip Steak for dinner as I try to get back on track with my keto diet. He gave me his old matched pair of 27″ gaming monitors which are awesome in my secret lab as I slowly go blind. It’s nice not having to squint so much at the tiny letters.

Happy Birthday to Me

My birthday was spread out over several days this year, which is a nice indulgence I don’t normally experience. But on my birthday itself, my oldest son IG took us out to one of my favorite restaurants, Bua Thai, where his best friend makes the desserts. It was a great dinner and I ate way, way, too much and went home and fell asleep.

My darling wonderful wife made me a keto cake inspired by the legendary Raspberry Zinger. It had whipped cream frosting flavored by powdered freeze-dried raspberries and Stevia. The following cake is one that she made, but I realized we demolished her birthday cake before anyone thought to photograph it so… the cake pictured is an appropriate placeholder:

Due to work schedules, we couldn’t include our middle child JJ in the Bua Thai dinner so the next night we celebrated a birthday make-up dinner at El Rodeo Mexican Restaurant. My wife had two medium margaritas and I had a little taste which was delicious but much sweeter than I remember. It turned out that two margaritas was a little bit much because my wife knocked over her glass of water while emptying leftovers into a carryout container and it was directed mostly at our oldest son IG who was left with a shocking ice-cold crotch water bath. His horrified expression was priceless. I ended up tipping extra because it took several people to clean up the mess and I felt bad. One of them picked up on the fact that it was my birthday (you should NEVER say that word in a Mexican restaurant!!!), and I got the embarrassing Sombrero moist-feliz-cumpleaños treatment since by that time my pants were also kind of wet. Fun times!

June 29 Beach Trip!

I went to Ocean Isle Beach with some of the kids and we stayed in my sister and brother-in-law’s beach house. I made a little project out of fixing the deadbolt strike plate, which was actually just a lockset plate which creates problems. It fits fine in the winter months but with wood expansion from the heat of the summer, the deadbolt doesn’t line up correctly and the place can’t be properly locked. I didn’t think to bring tools but I found a sale on a cool cordless craftsman drill for $50 and with some chisel work and drilling, I got a new strike plate to fit correctly.

We went in separate cars so I was able to wander around alone. I hit some crazy traffic going to the nearest beach so I went up to Sunset Beach instead and walked around for an hour before the 90-plus degree heat seemed about to kill me. I went to Boundary House and got a bowl of their awesome clam chowder, and wandered through tourist shops. I went to Ocean Isle Beach later when it was dark and cooler (82 degrees!). I was able to walk into the water which felt heavenly on my poor abused, neuropathic feet. I probably looked like an idiot standing in one place with a blissful smile on my face, not moving anywhere; but I didn’t care. I’m going to do me.

On Sunday we packed up and went to Myrtle Beach, then headed home from there. I ran out of energy at Benson NC and slept a couple of hours at a rest stop on the way home. My fatigue isn’t as bad as when I was on the chemo, but it is still there and when I’m out of energy I am completely spent.

June 16: Father’s Day!

For Father’s day we went to a Durham Bulls game with my father-in-law, my oldest son IG and my youngest JH, and nephews AZ and WZ. Getting tickets was tricky since the park was nearly sold out and finding 5 together was not possible so I got one lone ticket a few seats away. But happily there were some no-shows next to us and we were able to all sit together.

Sadly the Bulls didn’t win but we had great seats under cover from the sun and there was a cool breeze making everyone more comfortable. My father-in-law is a huge baseball fan and it is fun to listen to baseball stories and trivia. He always wears his Detroit Tigers cap that IG got for him, and the Detroit “D” logo could be taken for a Durham “D”, so it’s kind of a double-fan service.

May 28: A Day Trip to Hillsborough NC

Hillsborough is only a dozen miles away from Durham, but having an extra day off on Memorial Day weekend, we thought we would take a day trip down. We have already visited Ayr Mount a couple of years ago. It’s a beautiful house built in 1815, and I highly recommend going on the tour.

This time since I had just finished round 39 of chemo and was starting to get my sunshine back, my wife suggested we do a nice flat hike around the Occoneechee Speedway Trail. It meanders over to one of the first NASCAR tracks, which now sits overgrown and abandoned, but is a beautiful flat walk. And it ‘s really only a little hike from Ayr Mount, if you don’t mind fording a river and some wild underbrush.

The old track is still there as a trail, and you can still see it curves up on one side. It is comforting to me to see nature reclaim a place that had been utterly cleared of trees. I fervently dislike humanity’s destruction of wild spaces and habitats, and these kinds of abandoned places leave me with such misanthropic pleasure. I’m not a fan of humanity but all the individual people I meet, I love so much. I’m never sure how to square that in my head.

Posing with my lovely wife on a bench and realizing the race is never going to start.

There are a couple rusted out cars still present. There’s something sad about those lost old vehicles. Once they moved under their own power and had all the freedom of the roads to look forward to. Then something breaks and people gave up on fixing them, and they just fell in the battle with time.

It comforts me to know that the fate of all civilizations is to be reclaimed and covered in ivy and forest. All the cacophony and frenetic activity will be replaced by peace and the haunting buzz of cicadas. Niiiice.

Next we went to Spencer’s Tavern in town. It’s attached to a little in called the Colonial Inn that’s finishing its renovations and looking very handsome indeed. It has a menu full of lovely southern comfort food dishes prepared expertly and creatively. I had Fried Green Tomatoes and Deviled Eggs, and a hot Ham & Cheese sandwich. One of the old members of the Squirrel Nut Zippers was at the table next to us!!!

After a fantastic lunch we went to the Orange County Historical Museum which was small but quite interesting. I learned that Mazda used to make light bulbs!

And I found an amazing desk and a sign I want on my office door at work:

I also saw this cool old radio that was preserved in excellent condition, with two owners before it was donated to the museum. It is believed to be the first residential radio in Chapel Hill in the 1920s.

My wife got tired walking around before I did, which is highly unusual these days. But I did drag her to the cemetery to find the grave of someone who is quite possibly one of my relatives, William Hooper, who was a signer of the Declaration of Independence.

May 25: Durham Bulls Game

It was my second Bulls game this year out of three so far, and we went with my son IG’s coworkers. We were able to bring my father-in-law along as well and we all had a wonderful time. There were fireworks after the game, which was loud but exciting. One really nice thing about having an expiration date on your life is that you can embrace all the cool things you couldn’t do to your ears before like go to concerts with no earplugs, playing headphones at max volume, and pumping your music in the car so loud that the windows bulge. Oh yeah!

We got a visit from the Bulls’ awesome and beloved mascot, Wool E. Bull.
My son IG took this incredible picture of Grandpa Z rooting for the home team

May 23: Pool League

I am still able on most weeks, to play at least one match of pool every Thursday night and I have been improving greatly, holding my own as a rank 5 player. I have even begun winning some 9-ball games! I wonder if I can get to a rank 5 in 9-ball as well! We have an incredible team and I hope that we make the playoffs this season, there are a couple more weeks to go and we are playing pretty well. We took this selfie on my phone because my wife realized she didn’t have any photos of me at pool league:

30th Anniversary!

Our anniversary began with a trip to the lab and to the oncologist. I headed to work and after work we celebrated our anniversary with a dinner at one of our favorite date spots, Parizade, which has incredible mediterranean dishes.

It’s been thirty wonderful years of marriage to the most delightful, witty, patient, resilient, and beautiful lady I’ve ever known. Life together is full of joy, laughter, and thought-provoking discussions. Even life’s little curveballs are easier to handle as a team.

That pretty much catches us up except for the Zephyr trip, which I am continuing to document. A week of travel is a difficult thing to get time to narrate and post. Stay tuned!

Hitting the Road a Little

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The time until our Zephyr train ride grows short, but I’ve been lucky to have a few little weekend trips. I’m off the chemotherapy for now, but have picked up the new immunotherapy prescription called fruquintinib/FRUZAQLA 5 mg. I will be taking it once daily for 3 weeks, with one week off. The medication starts on April 24 as soon as we return from our Zephyr vacation.

April 8, 2024 – Lunar Eclipse.

Not having a lot of vacation left aside from what I have reserved for our Amtrak trip, I would have loved leaving town and going to see the eclipse somewhere. My Aunt RM told me I should go up to her house off the St. Lawrence River, in the path of total eclipse, but it just wouldn’t work out and with my luck I would have ruined everyone’s experience with terrible cloud cover and thunderstorms or something.

But in North Carolina we woke up to a cloudy sort of day that turned perfectly clear, and I found my 2017 eclipse glasses in an envelope in my desk at work. So my wife came to my office to share the glasses with me, and we sat at the cafe chairs behind my office building and enjoyed the 83% eclipse together.

This was my favorite photo, my wife’s silhouette next to the points of light that shone through the leaves of the trees. You can see the arcs of sunlight and the darkness of the lunar disc. Pretty cool!

April 6, 2024 – Ocean Isle Beach.

Last weekend I joined my sister SG, brother-in-law JG, and niece BG and her husband BR at Ocean Isle Beach. I sleep so well and restfully at my sister’s beach house. I don’t know if it’s the clean air, the silence, or being secure in the knowledge that I am safe in Brunswick county where every single person is armed to the gills… but I sleep really well. The beach was really perfect, sunny and not too hot, with a bit of a cool breeze, and at low tide there were shells everywhere. It was nice to put all cares aside and wander up and down the beach.

April 3, 2024 – Durham Bulls vs. The Jacksonville Jumbo Shrimp.

My employer has a box suite at the Durham Bulls Athletic Park and from time to time it gets offered to different teams. I put in for the drawing to get some of the tickets and got enough to bring my family’s two biggest baseball fans — Grandpa J and my oldest son IG. We got to watch the Bulls win against the Jumbo Shrimp.

I haven’t been to a baseball game since before the COVID, and we had a great time. It’s still early in the season so the game wasn’t as packed with people as usual, which was nice when we went down to get some concessions.

April 1, 2024 – Visiting my Lunch Bunch friend MG

Every week I bring groceries to my friend MG, who is sort of homebound at this point with 24-hour home care, but most of the time they are able to still bring him to our Bosphorus lunches. On other days I visit and get all his medications ordered and renewed, and apportioned into the appropriate slots of his pill case for the week.

This particular week, the weather was beautiful though saturated with pine pollen, and his home care worker F took him on a walk round the corner to the park so he proposed that they get married. She didn’t accept because he couldn’t remember her name and is maybe fifty years her senior, but hopefully she was flattered and not too put off by his all-too-frequent offers. He is back to feeling a bit more like himself after a couple health setbacks and hospital visits and though his short term memory isn’t all that reliable, he still really enjoys getting a visit.

March 30, 2024 – Johnston Mill Nature Preserve (a.k.a. The Poop Bag Trail)

The weather was very nice this day, which afforded me and my wife the opportunity to walk around the trails of the Johnston Mill Nature Preserve not too far away from our house. A dozen other people had the same same idea. We were sort of smitten that day with hackberry trees and kept finding them on and around the trail. There were some nice benches to rest on, which was good for me when my energy might be flagging.

The weirdest thing, though, was the astonishing number of little baggies full of dog poop I ran into everywhere. Now I can’t wrap my head around the sense of striding through the woods with my trusty pooch, watching him leave the trail and deposit his waste somewhere off the trail, then using a plastic bag to fish the poop out of the poison ivy, tying a knot in the bag, and then strategically placing the bag at the trail’s edge for the dog poop stewards to come by and pick up later. That dog poop would have biodegraded in weeks into nutritious worm food but now we have to wait 300 years for the bag to degrade first.

Can anyone explain the sense in this?!?!
No, really… I am not exaggerating

March 28, 2024 – A Nearby Lunch Visit

My Aunt RM stopped in my city on her way down south, and we had lunch at the local German bakery, Guglhupf.

Me and my Aunt RM at Guglhupf, photo from her Facebook post since my selfies were crappy.

We had a great lunch and I was very happy to see my Aunt RM! It is sad that we only get to spend time together a few times a year. Family is such a treasure in life and I am constantly grateful that I am in a great big one, with so many wonderful relatives!

We had a great meal, I had a bratwurst sandwich on a fresh homemade pretzel roll with house made sauerkraut, mustard, and a side of a very yummy sausage soup. I wasn’t able to really enjoy the pretzel roll due to the keto diet but I had a little and it was fantastic!

Aunt RM had about 70% of a reuben sandwich and she let me finish the corned beef at the end, and it was probably even better than the bratwurst.

I was so full of joy that my aunt made arrangements with me ahead of time so I could work from home that day and get to see her for lunch. She had spent some time at my parents’ house a few nights earlier and was able to give me her impressions of how they were doing. I am always amazed by Aunt RM, at how much energy and love she has to spare. <3 Truly one of Earth’s best humans ever!

March 24-25, 2024 – Asheville and Boone with JH.

I took a floating holiday off from work to take my youngest son JH to a personalized tour of the art department at Appalachian State University in Boone, NC. He has been thinking hard about which school he should attend, and to help in that decision we’ve been taking him to one-on-one tours of the art departments of each school where he has been accepted, to ask questions and get a better feel for the program and how it can move him closer to his career goals. I’m pretty proud of how much thinking and effort he’s putting into comparing the schools. I think he’s much wiser than I ever was about making big life choices. I pretty much always did what I felt like doing and made up reasons for it after the fact. He’s much more of a thinker and planner than I am.

We went on Sunday to Asheville as kind of a fun father-son outing. I’ve been doing a lot of last-minute planning in the last several months, going to see things I’ve always wanted to see, or to see things I just discovered I want to see, or sometimes going, just to kick the regularly scheduled pattern of life in the ass. I am really beginning to feel the detrimental affects of the cancer now — the fatigue, the liver discomfort, my sore core muscles when I overdo it, the continuing poopy concerns, nosebleeds, and the now-frequent headaches — so when a weekend comes and I am actually feeling good, I feel like I should be doing something. I should be moving as though perhaps I can hide and avoid things getting worse. Movement and activity seem to make me feel better in the even though in the short term it’s tiring. And my brain likes the distractions of new things to think about that I didn’t know before. I find myself craving information if I find it interesting.

So JH agreed to hit a few Asheville sites we might both find interesting. We woke up in the morning and drove out to Asheville. It was cold on the way there, temperatures were in the low 40s and I got chilled to the bone just filling the car with gas.

We started at the Grove Arcade, a neat historic building. Out in front were a half-dozen artists selling their work and we got to chat with them in some detail about their inspirations, what mediums they liked working with, what pieces really hit it off with customers, and similar discussions. I love seeing and hearing about artists’ journeys to find a balance between the stuff they love and the stuff that sells, and when sometimes these converge into profit or at least into the dream of breaking even. Sometimes art is a habit that you support financially and you’re just trying to minimize the damage. I have a deep sense though, that great work sadly transcends price tags and is best measured in the joy of experiencing a work that you have in your possession again and again in your life, how that work continues to live with you and speak to you even as you change.

We passed through the arcade and spent a nice few moments trying on hats in the hat shop, and looking at the textile art being sold there. We went to a clothing consignment store called Sugar Britches that was closed the last time we went by.

It was a fun, welcoming place with a lot of theater costumes and quirky handmade pieces. It was easy to spend a lot of time browsing.

After the Sugar Britches we stopped by a well-stocked candy store called Rocket Fizz that was doing a brisk business in one of the most addictive substances known to humankind. It had a little section of sugar free sodas and candies, so I got a couple things including a Boylan’s Diet Black Cherry soda! I had no idea this even existed, and haven’t seen it since.

We stopped in at one of our favorite places to visit and browse, called Madam Clutterbucket’s Neurodiverse Universe. It has a museum of stereo cassette tapes up on the wall as you walk in.

We found a really cool knit brain hat there that looked awfully smart.

Next we went to the Asheville Pinball Museum, a place I’ve wanted to go to for a long while. I have a tender place in my heart for video arcade games, pachinko machines, and pinball machines (even though I really stink at pinball, it is fun).

It was full when we got there so we spent $5 to play arcade games downstairs in the video arcade museum, and the $5 ticket price there gets applied to the $15 ticket for the pinball museum.

JH at the Pengo machine.

In addition to about 20 other games, they have a Pengo machine, and a Robotron. I own both of these arcade machines (and a Smash TV), though my Pengo’s sound board doesn’t work anymore. It’s on my to-do list. It was nice to hear Pengo playing the Popcorn song. A little fun trivia — Popcorn was a copyrighted song and they used it in the game without asking for permission, so after Sega had its butt sued into oblivion, they produced a V2 (version 2) board with its own, even perkier tune (if such a thing is possible). I have both printed circuit board versions at home but in deference to the copyright fiasco, I keep the V2 board installed. And then the sound board broke, so it was an upgrade that probably didn’t make a difference. And probably lowered the value of the game since the original V1 board in its original cabinet is probably worth more money. My changing it out was probably an act of video game heresy. But I do have the intact, well-preserved V1 board handy.

Once in the pinball museum you can play all the pinball you like until closing time for that $15 entry fee. It’s a bit of an assault on the senses since there are something like 75 machines in there, and there are a lot of boinking, buzzing, chirping, and bumping sounds filling the place.

I think heaven will be a lot like THIS place. At least I hope so.

We stopped for a snapshot by a big iron… it reminded me of the Marty Robbins song, “Big Iron” which kind of haunted my brain for a while afterwards.

Wondering how the ranger’s aim was so deadly with a Big Iron on his hip

Next, since Jacob tolerated me playing games for hours and he was the guest of honor on this trip, I let him pick a place to eat dinner. We ended up at Sonora Cuchina Mexicana, which was fantastic.

I had a very fancy chile relleno that was thankfully not too spicy for me

After dinner we left Asheville and traveled to Boone to check into a hotel and visit Appalachian State University the next day. We drove past Grandfather Mountain and took the Blue Ridge Parkway at dusk. It was a beautiful drive and we got to see the Worm Moon through the wispy clouds.

We stayed in a really nice hotel in Boone called the Greystone Lodge that was a great value for what a lovely and well-appointed hotel it was. It had an outdoor bonfire where you could sit in Adirondack chairs and toast smores kits, a nice warm indoor pool, and a simply fantastic breakfast with bagels from a local bakery.

The next morning we had an individualized meeting and tour of the art department with one of the professors, where we got to ask questions, learn more about the different concentrations of study within the art program, and we got to stroll around the campus. We went to have fish and chips at a local pub for lunch, and then since JH was excited about seeing Grandfather Mountain in more detail, we returned there and spent a few hours touring around. We went to the visitor center, then to the animal exhibit where we saw a black bear, elk, and a bald eagle (the otters and mountain lions were nowhere in evidence at the time).

We got to cross the mile high bridge, which made a spooky whistling noise in the high wind, and we scrambled up to the peak.

We then hurried back home for dinner with Grandma K and Grandpa J, and my wife’s brother FZ, his wife and two daughters. It was a very eventful trip!

Chemotherapy #37 Crossing Off Another Option

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March 19, 2024 – Chemotherapy #37 Cancelled

Yesterday I had another CT scan to assess the progress of the Lonsurf/Bevacizumab therapy regimen, and the news from the scan wasn’t great: there is one new 1cm tumor in my liver, about 50% growth in two other tumors, and no change in two others. There was a 20% increase in the size of my remaining peritoneal tumor, but no increase in the level of ascites, or fluid in my abdomen. There aren’t any new organs affected by metastasis, which is a blessing. There are signs of stress on my liver, as my bilirubin levels are increasing.

So we decided to discontinue the Lonsurf/Bevacizumab and look into other options, giving my liver and bone marrow a bit of a recovery period since my platelets were back down to 47. There is a study drug I may qualify for, and a newly-approved drug called fruquintinib that we can try if I am not eligible for the study.

To be honest, we are running out of treatment options at this time, short of traveling to another part of the country (or to other countries) to participate in other trials, though I don’t relish the idea of working remotely and being away from home and family, especially for such slim odds. I think I would much prefer to be comfortable at home than out chasing rainbows. But I take inspiration from Thomas Edison’s great quotation about finding the right filament for the light bulb: “I haven’t failed — I’ve just found 10,000 that won’t work.”

More news from the bright side though, I am feeling very well although starting the Lonsurf again yesterday hit me with a deep fatigue that only hours and hours of extra sleep could make any better. I’ve also been able to sort out over a few cycles of treatment, that Lonsurf gives me constant low-grade headaches and a little stomach upset. It also raises blood pressure but with the changes in my diet my blood pressure has kept itself quite low (113/63), so it hasn’t been very noticeable.

In my weeks off I am feeling great, in some ways better than ever, and I’ve been delighting in the opportunity to get out of town and see more stuff that’s nearby. I am so looking forward to taking our train ride across the American Southwest next month. I plan on posting lots of photos and thoughts during the journey!

Here are some of the things I’ve been doing lately, that have kept me too busy to update the blog. Some of this stuff was busy work like preparing my taxes and fixing plumbing leaks, but a lot of it was very exciting and memorable.

March 16, 2024 — Ocean Isle Beach, Myrtle Beach, and Southport North Carolina.

We had an unseasonably warm weekend and although on Friday it poured down rain, I took a half day off work and went with my wife down to the Myrtle Beach area, where we got to have dinner with my niece BG and her husband BR. It had been way too long since we’ve gotten to see each other, owing to her mom getting a bad case of west-coast COVID and having to wave me off a weekend trip where everyone would have been up in Virginia at the same time.

We met at a nice Japanese restaurant called Ichiban and did some catching up. I am always super proud of BG and BR and I admire their drive and refreshing pragmatism.

We stayed overnight in Ocean Isle Beach at my sister’s beach house, where I always get the deepest, most refreshing sleep I can ever remember. I’m not sure why that’s the case, but it is quiet and peaceful there.

Though I suppose it wasn’t so peaceful recently at the roundabout in the middle of town — in North Carolina, drivers just can’t get the hang of roundabouts, and they tend to drive straight through them at warp-speed. This must have been a spectacular accident:

We had breakfast the next day at Sarah’s Kitchen, a very nice family-owned restaurant where the service is always friendly and the food is very good and expertly prepared. I love the cheerful blue walls and the decor. Then we went back to Myrtle Beach so that my wife could experience the Gay Dolphin Gift Cove, and she balked at taking the Sky Wheel because of the claustrophobic enclosed pods and long periods of time you have to wait for it to load and unload passengers.

We walked around the boardwalk area and took in some sights but we had to get to our next planned stop quickly, so we cut the visit short and drove all the way to Southport NC to visit the North Carolina Maritime Museum there. North Carolina has three maritime museums and I aim to see every one of them. Last year for my birthday I went to Beaufort NC to see the artifacts from the Queen Anne’s Revenge. As soon as it opens back up, I want to go to Cape Hatteras NC and see the third maritime museum, the Graveyard of the Atlantic Museum.

After the museum we walked around Southport. What a beautiful coastal town! Lots of people walking, everyone was friendly.

There was a wedding about to happen at the community center nearby, the weather was warm, and the local pub was offering St. Patrick’s Day pints of Guinness on draft– which I couldn’t have because… you know, cancer in my liver and all. Sigh.

We built up an appetite and ate at Oliver’s on the Cape Fear, which was almost entirely reserved but they found us a high-top table where we could enjoy an early dinner.

Then we went to see the Oak Island Lighthouse at sunset. It was closed so we couldn’t go inside and climb up, but it was a sight to see and we got a bit of walking in, over to the beach, though the walk was cut a bit short by the urgency of my needing to go somewhere and poop — having half a colon can be really inconvenient that way.

We had a nice drive home to get my wife home in time for sleep and work the next day, and I got a free Sunday to work on taxes and get those out of the way. I also got to visit with Grandpa J and Grandma K, taste her Irish Soda Bread (fantastic!), and help them e-file their taxes too. Nice to check those things off!

The unexpected highlight of my day was dropping in on our friend SC who does energy work, and getting a treatment that absolutely neutralized my headache and abdominal discomfort, and I swear I felt lighter on my feet and bouncier in my steps afterward. Many heartfelt thanks to SC!

March 12, 2024 – Neil deGrasse Tyson

My wife and I went to dinner with my dear friend and Lunch Bunch member JC and her husband SG, then went together to see Neil deGrasse Tyson give a talk on Astronomy Bizarre at the Durham Performing Arts Center. It was informative, funny, and entertaining especially in the way that he helpfully explained for the young children how we used to have to turn a crank to open a car window, how we had to look up information in books in libraries, and so on.

March 9, 2024 – APA 8-ball Jack & Jill Scotch Doubles Tournament

I haven’t been in a pool tournament except for city finals, since my cancer diagnosis. I got invited by AM on my pool league team, to play in this tournament with her. Since I am rank 4 but play like a 5, and she is a rank 3 that plays like a 4, we figured we would give them a little bit of hell. I’d never played in a Scotch Doubles tournament so I was deathly afraid of fouling and playing in the wrong order, but in Scotch Doubles you have to take a shot, then your partner takes a shot, and it goes back to you. The players’ ranks added together can’t exceed 10, and as a 7 we were at the lowest ranking in the tournament. This gave us a little handicap advantage.

There were 64 teams and by crappy luck, the first team we played were two 5’s that ended up winning first place in the whole tournament, $2500, and a trip to the World Pool Championships in Las Vegas NV. The matches were very close but the other team beat us. It was a good showing, so we went to the loser bracket (modified double-elimination format), and played the other losing teams hoping to get back in the running. From then on we did really well, winning the second and third rounds, then finally losing in the fourth round in the game that would have brought us back into the fold with the winning bracket. I never thought we would do so well — placing like somewhere in the 20s out of 64 — but my teammate and I played our absolute best and worked really remarkably well together.

The next day I went up to Richmond VA to spend the day hanging out with my college friend RT, eating Cuban food, getting refills on my Penzey’s spices, and going to the Roosevelt for an amazing dinner.

February 27, 2024 – The Amazing Turtle Quilt

Today I got a package in the mail from cousin Diane. It contained the most beautiful turtle quilt made for me by her sister-in-law. Snif. I am so deeply touched by this gift — Niawen’kó:wa!

Since starting to take blood thinners and losing weight on a keto-inspired diet, I have been shivering with cold nearly all winter. It is so comfy to curl up on my recliner with this quilt keeping me warm.

February 20-23, 2024 – Sister Birthday Visit

My sister came into town for a quilting conference with her friend T, and I took us all to a nice Ramen dinner for her birthday celebration. The food was very good and I had ramen with kale noodles to lower the carbs. Not bad!

Some days later I came down with Norovirus and spent 4 days being deathly ill, ejecting liquids from everywhere… I don’t even remember Tuesday, I spent the whole day sleeping. I was super dehydrated, burst the blood vessels in my eyes while throwing up and looked a horrible mess for weeks afterward.

February 19 – Chemotherapy #36

Took Lonsurf for the first week, and the oncologists asked me to hold off on it for a couple days in the second week due to the norovirus infection, then I resumed it. We put off the Bevacizumab. The good news was that my platelets recovered to 150 right after this! Wish I could work out why. Some say it was the incredible amounts of sleep. Others say it was the heavenly milkshake I had, when I couldn’t keep anything else down but bone broth.

February 17 — Touring the USS Wisconsin

I had an amazing time leaving town on a solo trip to Norfolk VA, where I visited the Nautica museum (mostly closed), and had a guided tour of the command and control areas of the USS Wisconsin.

What an incredible tour! The ship is like a time capsule and your admission lets you wander practically everywhere on board for hours and hours. I took 17,600 steps and most of them seemed like they were up and down very steep ladders.

It was amazing, this ship was a portable city with guns that could shoot shells that weighed like Volkswagen Beetles for several miles and still hit within a 20 yard radius of the target.

I stopped in Williamsburg on my way home to pick up some Cheese Shop dressing and walk up and down DOG street, and around the campus.

February 3-4, 2024 — Winston-Salem, Pilot Mountain, and Mount Airy

My wife and I took some days away and got a hotel in Winston-Salem as a home base for some fun local tourism.

We started with dinner in Greensboro at Crafted: The Art of the Taco, where we found a great neon sign.

We stayed overnight in Winston-Salem and got a hotel that had an indoor pool. We tried to swim in it, but being on blood thinners everything is super cold to me, and it was too painfully cold to enjoy in the winter.

The next morning we drove to Pilot Mountain and spent some time appreciating the view from the top.

Then we continued on to Mount Airy, where we visited the Andy Griffith museum, and walked up and down the main street, stopping in some shops along the way.

We returned to Winston-Salem where we went to dinner at a fantastic restaurant called Mojito Latin Soul Food. I thoroughly enjoyed the atmosphere, decor, and the quality of the food. I wish this restaurant were in my own town, I would go there a lot.

We woke up the next morning and had breakfast near the hotel at a very nice breakfast spot. People in Winston-Salem were incredibly nice and helpful. I just got a wonderful vibe from every place we visited in town.

Next, we went to visit Körner’s Folly in Kernersville NC. Our town of Durham NC owes some of the popularity of Bull Durham to the efforts of Jule Gilmer Körner in marketing it. This magnificent and quirky 22-room home was a showcase for his furniture and design business, and is a unique and worthwhile tourist destination.

Next we went to see the largest chest of drawers in the world in High Point, NC.

We followed up by visiting Lydia’s haunted bridge in Jamestown, NC.

January 27, 2024 – USS Monitor

Feeling energetic on a weekend break from the Lonsurf chemotherapy, I visited the USS Monitor exhibit at the Newport News Mariner’s Museum. It was nice to poke through the exhibit at my own speed and study the artifacts there. What was amazing was how many reproductions the Newport News Shipyard produced for the exhibit — miniature working models of the engine and the CSS Virginia engine, a scale model of the USS Monitor parked outside, and various engine models from other ships in the miniatures exhibit.

I had no idea how luxurious the interior of the USS Monitor was, I guess I assumed it was an all-business-at-the-pointy-end sort of ship. There are cabin reproductions in the museum and it was very nice inside.

January 22, 2024 – Chemotherapy #35

Started a two-week cycle of Lonsurf on for five days, off for two, then on for five in week two. I noticed a lot of fatigue and the first few doses gave me upset stomach and nausea but things equalized and I felt pretty normal, though fatigued, for the rest of the treatment. The last day of treatment upset my stomach for more than a day, I was glad for the weekend off.

The Bucket List

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I suppose that every cancer patient has a bucket list. You really never know what is going to happen: you have quite a high chance of suffering a stroke or heart attack during treatment and ending up passing away, or you might get an aggressive mutation that lets the cancer spread out of control and it overwhelms your meager defenses, despite your best efforts to be healthy. But even if you don’t have cancer there are so many things that can end your life too early… do you have places you’ve always wanted to see? Things you always wanted to do? There really is no time like the present, when you don’t have any idea how many more turns of the earth you have left, to do something that you can look back on for the rest of your days with a smile and a warm, refreshed heart.

Here is a principle you can live your life by!

For many, many years I always have said I don’t have a bucket list, because I have been lucky enough to do everything I ever wanted to accomplish in my life: I have the most wonderful people in my life, my family and friends, and even if I haven’t specifically said it to you yet, I love each and every one of you. Love is so much more important than travel or anything you can own. The most precious moments I remember are meals and experiences shared with the ones I love.

My friend Kat once sent me a link to an astounding cover of a Megan Trainor song, Like I’m Gonna Lose You. I’ve since added it to my chemo playlist and the lyrics get everything right:

Show Lyrics

Part of me wants to just stay home and spend all my free time visiting with friends and family. And I do! And yet there is a deeply nomadic part of me that has the urge to wander the earth, because sometimes everyday life can be confining. As often happens in life, bills need to be paid, kids need to be fed, everything in the house seems to be falling apart around me and I barely have the time to patch it all together. It’s way too easy to relegate all your dreams to the back burner when you’re busy playing Whack-A-Mole with everything else.

There are so many things out in the world to see and do, and most of those things would be fun, but when the number of your remaining days is uncertain, it helps to prioritize those dreams; and perhaps the best way to do that, I figured, was to finally embrace the idea of a bucket list. Most of the things I would place on a bucket list are projects that would take hundreds or thousands of hours, and I have realized that to be on my bucket list, I would have to accomplish it in a very finite amount of time like a few days or a couple of weeks.

Really the most important thing on my bucket list lately was to visit my cancer buddy LP (and do so regularly), and I accomplished that a couple of weeks ago. It was all I had hoped for and more: an airplane adventure, good Cuban food, a bit of sightseeing, and the company of some people I love most in the world.

For my next stunt, there is one thing that my mind keeps coming back to. When I was growing up, with my parents and sister (and sometimes with our dog Tiny and my parakeet Hershey), we would drive all the way across the country whenever the U. S. Army stationed us in some new place. I remember in those days, while we chugged cross-country in our Volkswagen Squareback that we called Mildred, my sister and I would sing popular songs and show tunes until my parents’ ears would bleed and I’m sure they spent the hours praying desperately for us to fall asleep. But when we weren’t singing we did spend many, many hours just staring out the window at the cornfields going by, or the canyons and mesas drifting past, and somehow the experience of passing over the landscapes and vistas of the United States became some of my most precious memories. Even the memories of breakdowns and getting epically lost are good recollections, like the time we pulled off the road going up a hill in a snowstorm in New York state and the car had stalled and wouldn’t start again. My Dad was able to diagnose it was an ignition problem. He removed the steering wheel and handed it to my Mom, who looked down at the steering wheel in her hands, re-evaluated her life and said, “That’s IT!!! I want out of this marriage!” Fortunately she stuck with it and we suffered many many more memorable road trips together, full of show tunes, bee stings, rustic camping, overlooks, hikes, restaurant dives, hotels with broken air conditioning, even an urgent #2 bathroom stop in what turned out to be a homeless person’s forest bedroom.

There is a song I always associate with those road trips, it is On the Road by Carl Franzen performed by John Denver. It captures exactly the feelings of the lonely road, even with car breakdowns and getting lost:

Show Lyrics

Another great set of childhood memories for me was when we lived in Japan, we traveled by train to see Kyoto and Kamakura, and I just loved the train system, and the effortless way the trains went clanking down the rails past villages, gardens, forests, and farms. I thought at the time that Japan must have invented rail travel, since they had so many trains everywhere, and they had the fastest and smoothest train, the shinkansen.

I had heard before of the Amtrak Zephyr train that goes from Emeryville, CA to Chicago, IL over the course of two and a half days, with an observation car where you can take in the breathtaking sights of the American west flying by, and I always dreamed of getting a bedroom sleeper car cabin for two so that me and my wife could make the trip together. I also want to visit my cousins in Chicago and I have long wanted to visit the U-505 housed at the Chicago Museum of Science and Industry.

It isn’t particularly cheap to travel in the sleeper car, as meals and stuff are included, so I imagined the expense would be achievable with just the two of us. But when I mentioned this dream to the children they were super excited to go, and I had to contemplate the expense of getting three of the 2-person cabins, and airplane tickets to California, and back from Chicago. After pricing it all, the cost was daunting particularly when dropping several thousand dollars on cancer scans and treatments, hitting my out of pocket maximum but also having to cover the costs of tests and procedures the insurance refused to cover. Honestly, all the expense meant that I kept the whole plan in my heart as a sort of pipe dream on the side, something that would be nice but probably nothing that I would get around to doing.

I can’t really express how shocked I was this weekend to log into Facebook and see our friend AW started a GoFundMe to finance the trip, and after our families did a lot of publicity, the campaign had already reached its goal when I noticed it. I was stunned at how many people responded so generously to make this trip happen, and my heart is full of emotion at all the prayers and good wishes I receive every day.

So many people offer us so much assistance, bringing us meals during surgery or giving us GrubHub gift certificates, which very directly helped me to rest and heal from my surgeries and treatments since I cook the family meals at home when I am feeling well enough and it gave me a well-needed break when I needed the extra rest. Some friends and my children have helped drive me to lab appointments or radiation and chemotherapy treatments.

It is difficult for me to accept the heartfelt charity of others. There are so many people I love in my life who need some kind of help from me, be it companionship in times of loneliness, to shopping for food and protein shakes for the homebound, helping fix home carpentry issues, fixing computers and technology, setting up networking, teaching people how to use their phones and bluetooth on their car stereos, assembling furniture, fixing minor car issues, and so many other things, that I prioritize all of these loving acts of service over time I would like to spend on my own projects. But there is no greater love than to pour yourself out for the good of others. I love the St. Ignatius prayer:

Teach me to serve as you deserve, to give and not to count the cost, to fight and not to heed the wounds, to labor and not to seek to rest, to give of my self and not ask for a reward, Except the reward of knowing that I am doing your will.

So I realize this is why I find it difficult to ask for or to receive anything in return. And it’s why this gift is so very special, not because I get to spend precious time on a trip with my family, but because the people I love wanted us to make beautiful memories together. I am incredibly thankful and my heart is bursting with appreciation!

New Scan… New Plan (Chemotherapy #34)

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It has now been a concerningly long time since I have had chemotherapy. The last treatment was #34 on November 28, right after Thanksgiving. Chemotherapy was aborted on December 19 due to low platelets, and also aborted today on January 9, also due to low platelets and a change of plan. Though I feel amazing after 6 weeks with no treatment, I have been quite worried about the cancer being able to progress unchecked for all of this time.

Adding to my stress about cancer, I realize I have been depressed: mourning the death of my friend LD and worried about the deterioration of my 85-year-old friend MG, both Lunch Bunch friends. In addition, December 10 marks the anniversary of our daughter Maggie’s death, and December 16 is the anniversary of my brother-in-law JD’s passing. The combination of all these profound feelings of loss has been a little emotionally overwhelming for me, and I find myself with tears in my eyes at the most unexpected moments.

I’m going to describe what happened since the last post, and I am going to organize this post in descending order by date so that the most current updates are at the top, in case you find yourself in a TLDR sort of situation.

Today, January 9. I had a CT scan yesterday that went quite smoothly. They accessed my Bard PowerPort and used it to inject a contrast dye that allows the CT scan to better distinguish cancer tumors and other anatomy. The scan took about three little passes and then they de-accessed my port and sent me on my way. I can always tell when the scan results aren’t very good, as they don’t appear on my MyChart page until after I’ve talked to a doctor. So I had some trouble sleeping last night. I found a neat YouTube video with relaxing music and frequencies, that turns into rainstorm sounds. I fell almost immediately into a good deep sleep and besides being a warm platform and lap for the cats to fight over, I woke up around 3am with my head lolled to one side, a sore neck, and a good hankering for my nice warm bed.

We woke up early this dreary, drizzly morning and went to the cancer center, and there was a whole lot of traffic backed up because everyone seemed to be waiting for the valet parking. To get to my lab appointment on time, I leapt out of the car and walked a good way past all the stopped cars in the traffic jam. There is no substitute for feeling good, refreshed, and not fatigued due to any recent chemotherapy, so my walk was brisk and I was not even winded.

They sprung a urinalysis on me and after me staring at a cup in the bathroom for about 10 minutes, they gave up and took me to get my port accessed and blood work drawn for the Carcinoembryonic Antigen (CEA), Complete Blood Count (CBC) and Comprehensive Metabolic Profile (CMP) tests. They gave me a urine collection container to go and sent me up to my oncology appointment.

I got to see the PA, EMD, who I always enjoy seeing because she is very attentive to my symptoms and side effects. I have been having some intense bursts of right upper quadrant pain, particularly when I overdo things with my core muscles and don’t rest enough, but it concerns me so I mentioned it. In December I had been having lots of nosebleeds due to low platelets, but it seems to have resolved and I get an occasional pinkish color in my ever-present runny nose. I got my lab results and my platelets were 47 — not high enough to meet the threshold of 50 and certainly not the low-normal value of 150.

My Carcinoembryonic Antigen (CEA) result, which shows the rate of cancer growth, is now 45% higher at 34.4, up from 23.7 on 12/19/2023:

EMD then discussed the CT scan results, which were about as expected after 6 weeks of no chemotherapy. I have three lesions in my liver since the radiation treatment of the last one early in 2023. There is a new one in the right hepatic lobe, that is 1cm:

There is an existing lesion in the left hepatic lobe, that has grown 60% from 1cm to 1.6cm:

There is an existing lesion in the back of the right hepatic lobe measuring 3.2×2.2cm, size unchanged.

There is a 1cm peritoneal nodule on the abdominal wall of my left upper quadrant that has not grown, but there is a new nodule attached to the outside of the colon in the left lower quadrant that is 0.7cm that is most probably a diverticulum. There is a small amount of ascites (free abdominal fluid), a little more than in the last scan but not much. We want to avoid the ascites getting worse as much as possible, as it would have to be drained when a lot of fluid collects, but alas, this is the fate of people with peritoneal tumors that leak lymphatic fluid.

New Plan: So now that the efficacy of the FOLFIRI treatment is wearing off (mostly I suppose by skipping so many weeks because it’s knocking the crap out of my bone marrow), there is a new plan. In two weeks we will change to using the same Bevacizumab I’ve been using with FOLFIRI, administered every 2 weeks, plus an oral chemo agent called Trifluridine+Tipiracil, that I will take 5x per week for 2 weeks, then will have 2 weeks off. This seems much better to me since I have read that daily oral chemo keeps the pressure on the tumors and stresses them more. It sounds like this regimen has a lot fewer side effects than the FOLFIRI, and I certainly will not miss the 4-5 days of caustic liquid poops that are literally a pain in the ass.

Finally, we went to the infusion clinic and had to wait for a while for a room with a bed so that they could change out the glycerin in my HAI pump. This involves a nurse sticking a big needle into my abdomen and down into the HAI pump, extracting the old glycerin, flushing it with saline, then adding a new 30ml of glycerin that will keep me filled for the next 12 weeks. The nurse was training to be able to do the procedure on her own, so she was accompanied by nurse O., who has expertly accessed my HAI pump many times in the past. It was nice to see nurse O for the first time in a while, she deserves a lot of praise for her skill and professionalism. The new nurse did an amazing job of putting the needle into my HAI pump: she did it very smoothly without rocking it which causes a needless amount of discomfort. If I had gold stars on me to give, she would have earned one that day.

After they released us from the infusion clinic, we went outside, where a huge thunderstorm was rolling in and flickering the power for half the night, while my cell phone chimed with warning after warning from the National Weather Service to beware of flooding, tornadoes, and falling trees.

January 3-6. I took a trip to Florida and met my parents down there, to visit our old family friend LP, who is 82 years old and in the midst of his own battle with cancer. He has been my cancer buddy for a while, we were diagnosed with different cancers at about the same time, and we’ve both had quite a struggle, tough chemotherapy, surgeries, and it has been wonderful for me and my mental state to have our mutual support and encouragement.

It was a wonderful few days off, and I arranged it so I arrived at the airport and went to pick up my reserved Toyota Camry. The woman at the counter asked how many of us there would be, and upgraded me to a roomier car, which was a peppy Land Yacht of a Dodge Charger, in a fetching color:

I got a fast car. Is it fast enough so we can fly away?

I waited in the Cell Phone parking lot and picked up my parents when they arrived. We drove to LP’s house and had a wonderful, lovely visit. I got to go to the cancer center with LP for his labs and chemotherapy infusion. It seems like I spend a lot of time in Cancer Centers, so I was impressed at how classy this one was, with custom chairs and a number of nice spaces for gathering and waiting.

Back at LP’s house, we got to listen to my Dad and LP talking about their old war stories, and I had some late-night heart-to-heart honest chats with LP about how things are going for both of us.

LP’s Cancer Center in Florida

The weather, though not warm, was more tolerable than it was back home, and I captured a photo of Mrs. P (BP) feeing the birds with my Dad:

Dad and BP feeding birds at the lake right behind their house.

LP was our neighbor when we lived for three years in Arizona, when I was in Kindergarten to 2nd grade. He was very tall and had an imposing figure, and a booming voice that scared me at first but he always had a heart of gold. I remember he used to play with us, letting us kids crawl all over him like a jungle gym, and he would crawl across the floor with us all fighting to stay on top.

It was great to spend a little time with my old best friend from Kindergarten, LP-III (technically, LP is LP-Jr.). We got to meet his wife, SP, and their son and daughter, who were delightful and well-mannered young adults.

LP-III and I got into all kinds of trouble as kids, and anyone who knows me well has heard one or two stories, like the one about the time LP-III and I were throwing big rocks across a road to get them all the way to the other side, and some idiot Gunnery Sergeant drove his car into our rocks and broke a window and muffler when they collided with our rocks. The guy was scary and a giant tall, angry looking man. I turned and booked it, running to the freedom of a life on the lam, and LP-III sat frozen to the spot and gave the guy his name and my phone number. My mother got a call about two boys wrecking cars with rocks and knew exactly who the mysterious fugitive was.

To be honest, a lot of the trouble we got into could be traced back to me being a bad influence.

I also got to see LP’s daughter BNP, who is now a successful and high-powered executive.

LP’s kindness and sense of humor when I was an impressionable little kid, changed something about my mental DNA. Pretty much ever since then, I have tried to live with the kind of loyalty, friendship, and compassion that he showed every day. To my friends I refer to him as my “other Dad” which is probably confusing but I learned a huge amount from LP, and continue to learn from him even now.

How do you deal with a fatal cancer diagnosis? With love and laughter, living the biggest life you can live, every day of your life because tomorrow is not promised… even if you don’t have a fatal disease. I suppose like they say, life is a terminal condition. Make the most of it.

In that vein, I stepped out and spent a little time visiting with my friend DH, his wife and two daughters. He used to own the Brown’s Billiards pool hall where I got my start playing APA league games, until the business was shuttered by sweepstakes companies offering a better deal to the landlords that owned the space. So DH packed up, moved to Florida, and purchased the APA franchise in that area, so now he is the league operator. In memory of DH and Brown’s Billiards, my pool team still uses the name Brown’s Bombers.

December 30-January 1. I spent New Year’s Eve on an annual tradition getting a VRBO rental with my pool friends in Asheville NC. We didn’t do much local tourism, we just stayed in, played pool, and had many long chats and relaxed for a couple days. My friends made dinners and lunches and I just had to show up and be present. I had a wonderful time.

December 28. A special treat! My friend MB was in town visiting his daughter and me and my lovely wife got to have dinner with MB and his wife at Nantucket Grill. MB was my boss when I first moved to this area, and we started a business together that operated profitably for many years. He has always been a fun, engaging and refreshingly honest person and his including me in lunches and social events so shortly after I moved here, helped me to come out of my introvert-cave and engage more with people.

Me and MB at Nantucket Grill for Dinner

December 26-27. We drove up for an overnight trip to northern VA to visit my sister and parents for Christmas. Our car threw a check engine light and the coils and spark plugs had to be replaced. I also was able to have lunch at a fancy French restaurant called Mon Ami Gabi in Reston with my high school friend JK. Sadly, this restaurant closed at the end of the year after 15 years in that location.

December 25 we celebrated Christmas morning at home with all our children, and we had an evening dinner with my in-laws, Grandma K and Grandpa J, in their home about 45 minutes away.

As a Christmas treat, my wife made me keto peanut butter cookies using almond flour, with homemade chocolate kisses made with Swerve sugar substitute. Cookies have been something I haven’t been able to enjoy since going on a Keto diet.

December 23. We got an invitation to dinner at the Angus Barn with my friend JC and her husband S for his birthday, but he got sick and they had to cancel, so we used their reservation to have a nice date night. The food was incredible, I had a 22-ounce prime rib and my wife got a filet mignon.

We took a photo together but I look kind of creepy since in the first photo my wife had her eyes closed, so in this one I was showing her how to keep her eyes wide open for the shot, and I over-did it a little. So now I look like I just came from the Creepy Valley. Speaking of over-doing it, check out all of the Angus Barn Christmas decorations!

December 21-23. Our college friend AS took a train down from way up north so that she could visit for a few days. I took some time off work and we hung out, walking in Duke Gardens and going to fun restaurants which without chemotherapy was nice, I could have spicy food and not pay a gastrointestinal price for it!

December 19. My platelet counts were at 44, so the FOLFIRI+BEV chemotherapy was cancelled to give my body time to rebuild and recover.

December 16. The whole family traveled up to northern Virginia to celebrate my Dad’s 80th birthday! We had Bea Marlow cake that my Dad made for himself from memory, he’s extremely well-practiced at it. It’s the first sugar I had in a very long while. I didn’t have very much, but sugar sure activates your cravings for more. I felt like a drug addict wanting more. My father doesn’t like a lot of fuss made over him, but I think for this milestone birthday especially after a recent heart surgery, it seemed to warm his heart with the support of all his family.

December 8. After suffering more than a week of nosebleeds that leaked like a faucet, my oncologists set up an appointment with an ENT who cauterized my nasal passages. I probably lost a terrible amount of platelets that week. After only a couple days, the bleeding was down to a little pink staining when I wiped my nose, which is so much better than what it was.

December 2-6. I came down with a cold that gave me a fever, body aches, dry cough, headache, bad nosebleeds, and chills. I went to my primary care doctor and after some tests for COVID and flu, it turned out I had the flu so they started me on Tamiflu and after a day or so I started feeling better, but continued to have a much milder version of the same symptoms for quite a few days.

November 28. Chemotherapy #34. Blood work was okay, CEA was a little more elevated but not by a whole lot. I got the FOLFIRI+BEV regimen, both barrels at full strength. I had a horrible headache during and after chemo. The steroid Dexamethasone gave me only 3 hours of sleep that night, I spent the night staring at the ceiling listening to my wife’s breathing, and Elsie the cat wanted hours and hours of pets while I was obviously awake.

November 27. Date night at Parizade! My wife and I went to one of my favorite restaurants, Parizade in Durham NC. I had the amazing pork chop, which was incredibly tender and juicy, and she had the lamb chops.

November 24. Drove up for an overnight trip to northern Virginia for another Thanksgiving dinner that couldn’t be beat. As always, it was nice to have the whole family together.

November 23. The family celebrated Thanksgiving at my in-laws’ place, and my oldest son IG made the Indian Wedding Hash with my supervision and recipe. It turned out great with a few “foodie” modifications we made to the recipe.

November 19. Got to visit my friend B and her family near Fayetteville. I’ve known her for probably 20 years, and she has the sweetest husband G and daughter P. I got a wonderful picture drawn by P, and we got to catch up. My new year’s resolution is to visit B more often. Our visits are carefree and B is one of the few people in my life who can recharge my energy… I am secretly an introvert but I love people and visiting friends and family, but it is a drain on my energy to be with most people. B is a happy exception to the rule. B cooked me a fantastic dinner of Linguini alla Boscaiola from a recipe I brought, and it turned out great!

November 12. I took a day trip to Richmond to visit my friend RT for his birthday. We went out to Kuba Kuba for lunch, then to the Roosevelt for an amazing dinner! I had seared Ahi tuna:

That’s about all I have to catch up on for now!

Losing a Friend and Gaining a Family Member

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My emotions are still a little too raw to be writing this post, but perhaps it will be one of those cathartic things that will make me feel better in the end — but somehow I doubt that I will feel better anytime soon.  But at least you, the reader, will have a little insight into my life’s ups and downs, which can’t be a bad thing.

I have a friend LB who is one of my Lunch Bunch friends, and she is one of my dearest favorite people.  I have known her for 13 years, ever since our Lunch Bunch circle first formed.  Our Lunch Bunch started when my friend and coworker SG went by himself to one of our favorite restaurants for lunch.  I had recently changed jobs and wasn’t available that day, so he went by himself.  Back then, the restaurant only had 9 indoor tables: one that seated two people, six that seated four people, and two that seated 8 people.  The place was packed and there was a wait that would have exceeded his allotted lunch hour.  He was waiting patiently in line to be seated, and two very kind gentlemen (MG, 73, and HC, 70), waved him over to their table and told him he was welcome to sit and order lunch and participate in their conversation–or not, depending on his preference.  Knowing SG, he probably wasn’t too comfortable with this offer, but it might have been the only way to quickly get lunch, so he accepted.  He had a delightful lunch and and engaging conversation, and at the end of the meal MG and HC invited him to join them again anytime — they always came on the same day at the same time.

Some weeks later, SG and I planned to eat lunch together at the restaurant, but he wanted me to meet these gentlemen if they were still there.  We arrived, SG introduced me to MG and HC and we all sat down and shared a meal together.  And thus, the Lunch Bunch was born (though it didn’t have a name yet).

The restaurant had a waitress named LB who was very friendly and kind, though she had an interesting but endearing quirk: she was kind of clumsy and sometimes she dropped things and you would hear a crash in the kitchen followed by what sounded like harsh foreign words from the owner of the restaurant.  The owner couldn’t fire her though: she was married to his son and she worked there for free, and all her tips were given directly to her husband though she did get free meals when things slowed down.

One day, when we all piled in for lunch together, LB gave the Lunch Bunch its name. She said, “the Lunch Bunch is here!”  She was always a lot of fun to talk to, so several times we invited her to come and join us if she ever wasn’t working that day.  I think eventually the restaurant ended up hiring enough wait staff that she only had to come in during catastrophes or days of poor planning, and she started joining us at lunch and became part of our circle until she and the owner’s son got divorced and she was banned from the restaurant.  She also dropped off the radar for a while after the divorce because her life was complicated, I suppose.  We stayed in touch on Facebook, and now and then I would meet her for lunch at other local restaurants and catch up.

LB was always generous with her time. She was an outgoing, supportive friend and had a great big heart. When our Lunch Bunch friend MG had his knee replacement surgery, his son who lives in town didn’t feel like taking him the hospital, or waiting for him to get through surgery, or even visiting him afterward. LB immediately volunteered to take him to the hospital, she waited for him to get out of surgery, and she stayed by his bedside all night until he was discharged the next day, and she drove him home.  Back in February, when my wife had to be at work during some of the radiation treatments on my liver, LB woke up at 5:00 am for four straight days, drove 45 minutes to pick me up and take me to the cancer center.  Her friends and family could always count on her to drop everything to help them whenever they were in need, either by transporting them somewhere, spending time listening to their problems, or by bringing them delicious homemade food.

She was like a Disney princess because wild animals like squirrels, deer, and bunny rabbits would come up to her and let her touch them — even weird varmints like lizards, bumblebees, and butterflies, and moths got in on the action.  And so did a large number of people: she had more friends and acquaintances than I could even count.  I am kind of an introvert at heart so I prefer to have a small number of very good friends instead of hundreds of more distant friends, because even though I love being with people when I feel like it, all my energy is revitalized by being alone and reading, or thinking, or listening to music, or woodworking, or just daydreaming (about ice cream mostly).

When I got diagnosed with colon cancer, she texted me often, tracked my progress very closely, listened to me complaining about the worst times, and took me to lunches that my stomach could tolerate after chemotherapy.  She encouraged me to be grateful for every moment, to live every day to its fullest, and she told me never to worry about the outcome.  Life is a journey best taken one small step at a time.  I was going to be just fine.

I remember when her dog Layla, a pit mix, had to be put down, she talked about her beautiful dog’s life from puppyhood to the grave. Layla was her companion, her family, and her protector and after Layla died she was so unconsolably sad. And she began to get very anxious about living alone without Layla’s protection since she had several creepy ex-boyfriends who continued to stalk her even years later.

As generous as she was giving her time to so many people, she was petrified of being a burden to anyone.  She was fiercely independent and insisted on never needing help.  But she always trusted me since, as she said, Layla always stood guard between her and people she should be wary of, and Layla always took an instant liking to me, which was very rare.  So whenever LB’s cat Elsie needed to be fed while she was out of town with family or friends, she gifted me with her trust and her house key–and a set of unbelievably specific instructions for feeding, brushing, and caring for Elsie (and also information about caring for her plants).

Then this year at age 40, she got a uterine cancer diagnosis and shocked me by saying she wasn’t going to get treatment for it, she was just going to let it take her.  She was anxious, fearful, and suspicious of doctors and hated needle sticks and the very idea of surgery, even though she had a better than 95% chance of survival. I was shocked and saddened by this decision, and I think I was a royal pain in the ass about getting her to have a second opinion and seek more information about treatment.

I work hard to silence all judgment when I am with my friends and family.  I focus on always giving unconditional love, and it was personally very hard for me to support her decision without my own feelings getting in the way: here I was, struggling and suffering for the smallest shot at something like a 12% chance of cure, and her just giving up.  It was painful for me to contemplate her choice, and honestly it will always haunt me.  But her life was harder than I can even wrap my head around.  A lot of people took advantage of her generosity and kindness, and she suffered a lot of abuse, trauma, and betrayal from the people she loved the most.  She didn’t want to die, but she also wasn’t all that excited about getting dumped on even more in life.  In her darker moments, she even seemed sort of relieved at the thought of wrapping things up at this point.

Then she started having panic attacks and being afraid to go outside.  I started bringing her food and cat food for Elsie when she was too anxious to leave the house. Then her HVAC system caught fire and nearly burned her house down, and she was anxious about being indoors too even though it got completely replaced with a brand new, safer HVAC system.  Her doctors prescribed anxiety meds that made her angry, or gave her thoughts of suicidal ideation.  She started going for days without sleep and hallucinating.  After two stints in rehab for alcoholism years ago, she admitted she had started drinking again.

Alcohol is a scary poison: she would drink it to fall asleep after days of insomnia but I warned her often that alcohol, especially in large doses, interrupts good sleep, prevents REM sleep and deep sleep, and over time can do permanent damage.  She pretty much ignored all that, and soon her drinking quickly led to blackouts, memory loss, mood swings, and mixing SSRIs and sleeping pills with alcohol.  She could barely walk in a straight line, drinking or sober. She started getting paranoid. An ex-boyfriend from decades ago has been driving by her house ever since they broke up, and he recently knocked on the door begging to talk, and she threatened to call the police if he didn’t leave.  She changed her locks and gave me a new key, “just in case.”  Just in case… what? She started alienating herself from friends and family, being argumentative or sometimes just texting and not making any coherent sense at all.  She couldn’t hold down food if she ate it at all. She lost all motivation to succeed, improve, or even to straighten up around the house. She was complaining of pain in her legs that felt like her muscles tearing off the bone.  I begged her to make doctor appointments with her primary care provider, a neurologist, and an orthopedist.  I suggested specific doctors and specialist. I would even take her there if she was anxious about driving. She kept canceling the appointments, anxious as she was about doctors (and it turns out, not wanting me to know too much about her medical status). She also didn’t like how doctors blamed every little thing on her alcoholism (which, to be completely honest, was the root cause of a great many issues, starting with her being born with Fetal Alcohol Syndrome and decades of drinking leading to Wernicke-Korsakoff syndrome.

For the first time ever, we were getting in arguments as she misinterpreted my attempts to understand her increasingly cryptic texts (often sent in the wee hours of the morning).  After getting angry at me, she would stop reaching out for a few days, then returned to apologize.  When she did that, she sounded completely normal, like a dark cloud had passed.  She was struggling hard to change and cut back, and to leave the house. She was making plans to attend a concert, she went out for groceries, she reached out to friends and family.  She reported things were going so much better except for the leg pain.

Last week on Monday I had a CT scan and she texted me at 4:17pm wanting to hear the results, but the radiology report wouldn’t be available until Tuesday before I had chemo.  I was feeling sick that day — I took the day off work to sleep when I wasn’t being CT scanned and filled with iodine contrast — and being asleep I didn’t respond for a few hours.  I didn’t get a response which was weird, she always responds immediately even if lately it’s just nonsense.

Tuesday morning at 8:00am I went to the Cancer Center for my oncology visit and chemotherapy infusion, and tried to text and get any kind of response. Silence.  I called, even at 3:00am, and it went to voice mail.

Wednesday morning I went in to work, had my regular status meeting with my co-workers, and the worst terrible feeling settled on me and I felt some power, some force saying (not literally), “you must go do a wellness check.”

I took an early lunch and immediately drove the 15 minutes or so to her house, where I found her parents on the doorstep trying to get into the house.  Their key didn’t work, and I explained about the lock-changing and her sort of paranoid thoughts due to the ex-boyfriend thing.  My key worked and got us into the house.  We went through the house, and as we got to the bedroom we found her peacefully lying curled up in blankets in bed.  She was very cold and very dead. There was lividity and no rigor mortis, and later on my guess for the police and paramedics was that she died on Monday between 4:17 pm and 7:17 pm.

I was shaking and crying, I was immediately in shock.  My face felt numb.  My hands felt numb.  Her parents, who I had never met before, were also in shock. They called 911 and we waited for the police to arrive.  We explained everything while the paramedics came and went back to the bedroom. The medical examiner arrived with the forensics team and took pictures of everything.  Her parents and I gathered all medications from everywhere in the house we could find so they could make a record and count the pills in each bottle.  Her father was looking for a suicide note but I told him, there was absolutely no way it was a suicide.  Just days before her mood was improving, her anxiety was lessened, she had hope for the future.

I suspected she had a pulmonary embolism because she was essentially bedridden by the leg pain, and leg pain is often a good indicator of dangerous clots.  Her parents suspected alcohol and medications, and told me a great deal about her history I didn’t know (and really, I didn’t want to know that my friend was so troubled in life with relationships, and family drama).

I kept looking for her cat Elsie but she was nowhere to be found, so I assumed she had been let outside before LB died, but it seemed unlikely because the cat only wanted to be outside for a few minutes to scratch at the dirt and smell everything before begging to come back inside.  So I just focused on being there for her family and helping them grieve, and trying to hold my own self together.  The lead police officer was an incredibly compassionate, sympathetic person and I appreciated his calm demeanor and gentle way of asking questions he needed the answers to.  Soon the medical examiner told the family he was going to put her in a body bag and put her in a nondescript white van parked on the street.  Her parents went on the back porch because they didn’t want to watch, but I waited for them to put her on the gurney and I walked them out to the van.  For some reason I just felt like she needed someone to walk with her body and spirit.  I kept thinking about how fearful she was of needles and surgery, and the indignity of the autopsy that was to come.  She would not have wanted it that way.

When she was gone and the police excused themselves to leave, I stayed and chatted with her parents who were just reviewing all the puzzle pieces in their head, and I was adding puzzle pieces of my own until we got to a sort of sense of being settled.  The cat Elsie showed herself and she was absolutely pitiful.  Her tail was puffed out like a wire brush, she was crying and coughing, shaking and miserable after almost two days not being fed and having to see her mommy’s body.  I have never seen an animal grieve before, but it was obvious that Elsie was suffering a deep and terrible grief.  LB’s parents said they have no idea what to do with her, since one of their cats used to live here but terrorized Elsie and so they took that cat into their own family.

I remembered that LB had been impressed that her cat really liked me and let me pet her, when she was often quite triggered by men due to abuse she suffered in the past.  LB made me promise at the start of her anxiety troubles that if she ever died, I would adopt Elsie.  I did promise that, but I knew in my heart of hearts that it was much more likely statistically, that I would be the one who died first.  But I’ve grown to love Elsie and her little quirks.  She is adorable and just very, horribly cute.

I explained LB’s wishes to her parents and they were very relieved.  We decided to leave Elsie in the empty house for a couple of days and they would feed and check on her, and when my chemo was taken down I could text them and pick up the cat.

When I came back for Elsie, they had found her cat carrier and after giving me a status update on their obituary writing and funeral preparations, we loaded her into the carrier.  They gave me LB’s jacket so Elsie would have her smell.

Elsie has been adjusting to life in a new home with two big male cats — and Elsie is so delicate and small. But she grew up with a pit bull mix and is pretty fearless about enforcing her boundaries. She is also very curious about our family and the children, having spent much of her life with only one or two adults. Her favorite activity seems to be knocking things off all the dressers and end-tables, and she is quite fond of waking me up at 3am wanting tons and tons of pets, but that isn’t so horrible. Elsie is now surrounded with love and doing well in our family.

Overscheduled! (Chemo #32)

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It has been far too long since I posted an update, but lately it feels like every single moment of every single one of my days is overscheduled. It has been giving me a lot of extra stress and I think I need a vacation… soon! But I only have a couple vacation days saved up and I have to be careful about using them in the run-up to Christmas.

So let’s catch up and talk about some of the things I got to do up until today.

Sept 13: Dinner with friend S. at https://www.scratchkitchenandtaproom.com/. I’ve known my friend S. since about 2001. I have always found his honesty refreshing and I love hearing his stories. He is particularly open with me, more so than with other people, because I am never judgmental about his life choices. I get to live sort of vicariously through him because he is unfiltered, no-nonsense, and he doesn’t tolerate a bunch of crap from people. I admire his strong boundaries and ability to live for the day. We always have fun conversations even about the tough parts of life.

Sept 15: Visit from friends AS & PV. One of my early college friends AS and her husband PV stopped in our town to visit us on their way back home to Connecticut. It has been something like 8 years since we have seen each other, which is a regretful number of years. How do they fly by so quickly? It was my first time meeting A’s husband PV since they have been married for 3 years and the whole COVID thing really arrested our travel plans for a long time. We went to some nice local favorite restaurants and did some well-deserved catching up. It was nice to visit old friends, it is truly one of the greatest joys of my life to spend time with friends and family.

Sept 22: Visit Parents and Sister in DC. I took a day off to travel with my sons IG and JH to visit my parents and sister in the Washington, DC area. My father was scheduled for heart surgery the next Tuesday and I couldn’t be around due to my Chemotherapy #31 happening at the same time. I wasn’t super worried about the surgery because it is fairly routine and low-risk these days, but I was a bit worried. My father is built from pretty tough and resilient stuff. I think this is the first time I can think of where my father had a surgery or any kind of sickness at all. I’ve always thought of my father as an immortal sort of force of nature, so worrying about him didn’t come to me naturally, but I managed it anyway. All in all we had a wonderful visit, and my father got to spend some time teaching the boys how to do woodcarving, one of his super talents.

Dad/Grandpa H. teaching the kids some woodcarving basics

Of course, after the surgery instead of the rest he was supposed to take, he was up on his feet weeding the garden and even driving to Centreville to load a lawnmower into the bed of his truck. It is impossible for him to sit still for any length of time, he is always accomplishing something from his checklists. I like to tell people that he’s like a shark and will die if he ever stops swimming. That’s my dad!

The kids hanging out with Mom/Grandma T.

Sept 26: Chemotherapy #31. This cycle, my blood work showed my carcinoembryonic antigen (CEA) levels increased 29% which says there is more cancer growth happening. I sort of expected the levels to taper off or go down if the chemotherapy is working and the radiation treatments killed the liver tumor, so this was a disappointing result. I am just hoping that enough cancer cells are also dying (which we can’t measure without a CT scan), to cause the tumor size to be stable or even for it to be shrinking. I got a dose of FOLFIRI plus Bevacizumab and went home.

This cycle caused me more fatigue than usual, but I had no nausea or mouth sores which was nice. I still attribute these easier chemo symptoms to the low-carb diet. Pooping is still never fun though. It was bad on Saturday because the caustic liquidy poops made everything irritated and painful, to the extent that my son IG had to take my arm and walk me down to my recliner so I could rest on its gel cushion. And on that weekend after chemo, I am limited by what I can accomplish because I have to stay close to the bathroom for several days.

Sept 30: Gatherings. Despite it being the Saturday after chemo–which is really the worst poopy day after chemo and I don’t like being too far away from my own bathroom–we had two social gatherings to attend. It was delightful to meet new people and have engaging conversations, something that feels increasingly rare since COVID. It was lovely but definitely took a toll on my already-low energy level, and I fell asleep in my recliner that evening while catching up on my favorite YouTube video feeds. For example, I love to follow Ghost Town Living, Eamon & Bec, Camping with Steve, Bedtime Stories, Eva zu Beck, Isabel Paige, half a million cooking channels and woodworking channels. There is something so relaxing about voices telling adventures from afar while I’m snuggled up in my sister’s purple flannel magic sleeping quilt, it lulls me to sleep most of the time (except on chemo day with those darned dexamethasone steroids! Ugh!).

October 2: Endocrinologist. I had the most amazing visit with my endocrinologist, who looked at my blood sugars and blood work and gleefully announced that he was taking me off all diabetic medications because he considers me no longer diabetic. The low-carb diet has completely controlled my blood sugar. No highs, no lows, just a solid blood glucose reading between 80 and 100 pretty much all the time. This has been one of my goals in fighting my cancer, since diabetic patients succumb to the disease earlier, and I would like to live as long as possible with as high a quality of life as I can manage.

October 5. Pool League. I have been lucky to have felt well enough to go to pool league nearly every week, though the 6-hour period of practicing, standing, playing, and tallying matches often tires me out by the end of the evening. My 8-ball game has been suffering even as my 9-ball stats have been very good. But this particular night I played Doug, who was on my pool team for many years and stopped playing league for a few years, and just returned to the league with another team. From the time I was a league n00b about ten years ago, Doug has coached me, practiced with me, and given me some dastardly time outs (his defense strategies are aggressive and effective). I’ve missed getting to see him every week. This week though, his team put him up against me in an 8-ball match and I eked out a win. I don’t think I’ve ever even won a single game against him in practice and never had to play him in a match before. He wasn’t as happy at the result of the game as I was, but he was a good sport. It was a happy, validating moment for me and it was an incredibly tense, close and hard-fought match. I expect I just got lucky that night to come out on top.

October 6: Ocean Isle Beach. I took Friday off work to catch up on some of my automobile maintenance, getting the minivan oil changed, changing out front brakes on the Smart Brabus, and taking it to get the leaking flex pipe replaced, then getting it inspected and registered. When my youngest son JH got out of school, we drove to Ocean Isle Beach to visit my sister S and brother-in-law JD at their beach house. I got the whole spare bedroom to myself and slept in absolute peacefulness that evening, I can’t remember the last time I got such a complete and restful night’s sleep. The beach always seems to do that to me.

It was finally a well-needed bit of relaxation and I realized that lately I have been deeply, terrible worn-down by all that irritating stuff you gotta do day in and day out. I am just exhausted and this last round of chemo, though it didn’t have a lot of side effects, left me with a deep fatigue (for actual medical reasons that explain this fatigue, see my paragraph on chemotherapy #32 below).

Eating breakfast at Sarah’s Kitchen in Ocean Isle Beach with my sister SG and brother-in-law JDG

We went to breakfast and spent the rest of the morning walking up and down the beach looking at shells and though there were some moments of rain, it was a perfect sunny breezy day.

Sandpiper at Ocean Isle Beach

October 12: Gary Gulman performance. My wife and I had the pleasure of going on a date to the Carolina Theatre to see Gary Gulman perform his comedy routine and book-signing tour. He is always a hoot and a holler, and I love his cerebral ramblings. We’ve seen him a few times live, and it’s always a good show!

October 12: Middle-child JJ’s Birthday! On this day we went out for a birthday dinner at our favorite Mexican restaurant and were joined by Grandma K and Grandpa J. Happy Birthday JJ!!!!

October 14: Missed an important wedding. I have long had an optimistic hope I could make the 15-hour drive up to upstate New York to attend my cousin KM’s wedding, but on doing a sort of systems check of my health, I realized that it was not going to be a reachable goal. I also would have to return by Tuesday for my next round of chemotherapy. I really wanted to see practically everyone in my family there. The previous week I was fatigued, and this week was worse. Unless I went by plane I wasn’t going to be able to stay awake long enough to keep all four tires on the road. It was a disappointment for me and I hope the family forgives my absence and that I get another chance to give my cousin KM a big, loving, supportive hug. Congratulations KM!!!

October 14: Eagle Scout Ceremony. My nephew WZ achieved the rare rank of Eagle Scout and we drove down to Pittsboro for the ceremony. It was an inspiring celebration of his hard work and dedication. WZ reminds me so much of his father, my brother in law JDZ, who will always be one of my favorite and cherished humans of all time, he lived with me and my wife–his sister–in Williamsburg for a while and died in 2008. I am so proud of his son WZ’s accomplishments and the fine young man he has become. I can’t really mention my pride in WZ without also saying that his mother JZ is one of the most invested and loving parents anyone could be lucky to have. Also my mother- and father-in-law KSZ and JPZ moved down here to help care for those 4 children, who are growing up to be such wonderful people.

October 15: Work Conference. I got to attend a work conference in Raleigh with several of my coworkers. I got to see several interesting lectures about open source solutions, meet dozens and dozens of vendors, and even run into some old faces I haven’t seen in a while!

October 17: Chemotherapy #32. My blood labs showed low red blood cell counts, hemoglobin, hematocrit, and platelets which help explain why I feel fatigued and more easily winded.

My white blood cell counts were about half the minimum values, so I was prescribed another dose of Udenyca, which stimulates your bone marrow to produce white blood cells so your immune system and healing ability aren’t so badly affected. I was also given a 25% reduced chemotherapy dose to keep my numbers from dipping too low in this cycle. Since the last time I took Udenyca I had disturbing bone aches and a general unwell feeling, they told me this time to try taking a Claritin every day for a few days before, and for several days after. Once the take-home 5-FU chemotherapy football was taken down on Thursday, after riding the side effects for a few days until I felt more normal, my wife injected the Udenyca subcutaneously into my arm. She did an excellent job, it was barely noticeable as I got the injection. My Carcinoembryonic Antigen (CEA) continues to rise linearly, this time it rose 27% from 11 to 14 meaning there is some growth of new cancer cells. This doesn’t tell us if any have been killed by chemotherapy, so we won’t be sure until the next CT scan whether things are getting better or growing worse, but these rises are sill a concern:

All in all, this round of chemotherapy was as tolerable as the last few, which were made dramatically better by following a low-carbohydrate diet.

October 20: Dryer Failure. It seems like this is the season of things breaking lately, and my electric dryer was the next casualty. I got it repaired after a few days and it was nice having clean clothes again!

October 25: JJ’s First Car! I found a coworker selling a used 2012 Subaru Impreza with only 100k miles for a great price, way under retail. I test drove it, crawled around underneath it to check out the CV joints, brakes, exhaust, oil leaks (none), and checked out the service records on CarFAX. It’s a great vehicle, so I consulted with JJ, and we arranged to purchase the vehicle with a bit of the money JJ has saved over the past couple years.

October 27-28: College friend visit. I was overjoyed to learn that my college roommate and good friend YS was flying down to spend a couple days in the area. It has been many long years since we’ve gotten a chance to visit, perhaps 8 years? He lined up a hotel, rented a car, and worked from his hotel on Friday. That night we went to the Angus Barn for a lovely dinner. We learned it can seat about 7000 people, and there were only two reservations available that same day, one at 6:30pm and one at 9:00pm, and both were recent cancellations. The food was great and we had a good time catching up. The next day we went walking through Duke Gardens, had lunch at my favorite Turkish restaurant, Bosphorus, where I tried the Chicken Doner Kebab and he had the Ali Nazik. I showed him the campus where I work, and then we went walking through Cary’s Hemlock Bluffs Nature Preserve, where a microclimate caused by bluffs allows a grove of hemlock trees that usually grow at higher elevations in the North Carolina mountains, to grow and thrive here. We had dinner at the Refectory Cafe and stayed at the outdoor tables until the restaurant closed, having an easygoing long visit over great food. I am so flattered that I have friends that are willing to go through the time and expense of coming down to visit me. I really enjoyed getting to catch up and reminisce with YS, and we were lucky to have a beautiful day to enjoy outside — not too hot or too cold, just a perfect day!

October 29: A lovely unscheduled day. I have to include this day because I made absolutely no plans for the day and spent it wandering around, getting supplies at the store, sleeping in, relaxing, sitting in nature and generally enjoying the day. It was refreshing and allowed me to approach the scanxiety of the next day with less concern and worry.

October 30: Sick and Tired, also Scanned. The chemotherapy has essentially caused my nose hairs to fall out or thin out, and this has embarrassingly caused my nose to run almost constantly. I’m always using a folded over bunch of tissues in my pocket to dab away the runny stuff, but today I felt pretty terrible, had some respiratory congestion, lots of nasal congestion, bad cough, lower blood oxygens, higher blood pressure, and then had to go to the Cancer Center to gave my CT scan done. They accessed my port, gave the the CT scan, injected a couple hundred milliliters of contrast, and scanned again. I didn’t get the results that night, but had a little trouble sleeping while worrying about the results I would get the next day.

October 31: Chemotherapy #33. We arrived at 8:00am for our appointment with the oncologist, where we learned that the CT scan results showed no increase in the size of my peritoneal tumor, which means that it is stable — neither growing nor shrinking. There were also no new metastatic tumors, and the liver tumor treated with radiation seems to be the same size though it’s too early to tell if that liver tumor’s cells have died. There is a small amount of peritoneal free fluid, which is a side effect of having a peritoneal tumor interrupting the proper flow of the lymphatic fluid in my abdomen. At some point it will get to be so much fluid that I’ll look pregnant, and they will have to regularly punch through my abdomen with a tube to drain it, but thankfully we aren’t there yet!

My CEA levels increased another 20% to 16.8. But it looks like from the CT results, the tumor size is stable.

My red blood cell counts improved somewhat, but especially improved were the white blood cell counts and neutrophils are right in the middle of the desired range! Great news! It means the Udenyca injection did it’s work very well.

We did skip the Bevacizumab but went with 100% of the FOLFIRI dose this round. Skipping the Bev will help my red blood cell counts not to go so low, and hopefully won’t badly affect the cancer growth.

Getting some work done while receiving chemotherapy

So as of today I am tolerating the chemotherapy quite well, very few side effects at all except for the usual poopy issues that FOLFIRI causes. I am also not feeling quite so fatigued, which is a good thing.

Zorched Again (Radiation #2)

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On Tuesday, September 5, I went to the basement of the Cancer Center where the radiation oncology department is located. After checking in and waiting about a half-hour, I was taken to the radiation treatment room. I had to take off my shirt, which exposed all the drawn marker lines and stickers that protect them. These lines were placed in an initial CT scan visit, so that the radiation machine knows exactly which spot to target.

I sat on the table and scooted my butt into the rigid form that sorta holds me still (I’d lost about 6 pounds since it was made, so it was a bit of a loose fit). Then I laid down in the form, on top of a sheet. They used the sheet to lift and scoot me right and left until the green laser lines coming out of the radiation machine lined up with my marker lines and stickers. I had to keep my arms above my head for the duration of the session, which caused an ache in my bad right shoulder.

Normally there is a medieval sort of press they put on that pushes down on your abdomen and holds you still, but my HAI pump is in the middle of all that and it hurts to press on it, so I get to go all freestyle with it, and hold my breath instead, to remain still and keep my organs from moving around. I also had to fast for at least 3 hours, no food and only sips of water, so that my stomach would be relatively empty. Being the overachiever, I fasted for 14 hours from 11pm the night before to 1pm when the treatment was scheduled, which wasn’t much of a challenge.

Using breath holding, they get the alignment just right, using x-rays to visualize the liver and target tumor area, and the table would adjust up and down to get the aim just right, and after a while the radiation treatment started. It was about five or six sweeps of about 30 seconds, and I was able to hold my breath through each sweep, not too challenging except that you have to exhale nearly all your breath before holding it, so you don’t have full lungfuls of air. I spent my time relaxing so as to use less oxygen, and I was breathing quickly and deeply to get myself really well-oxygenated before each pass. Even though the breath-holding was not much of a challenge, the staff were impressed because it makes their job much easier to complete an entire pass in one go.

The machine makes whirring and clicking noises as it operates, (hopefully) zorching the liver tumor, while they play a bunch of relaxing unoffensive music like the Beatles, John Denver’s Country Roads, Fleetwood Mac, and the like. Country Roads was maybe a bit weird because it was used in the movie Alien: Covenant to lure a bunch of colonists to a planet full of Nasty. Instead of thinking about that, I thought about the super-long cross-country drives my family would take when we got stationed at a new military base every few years, and how in those days John Denver was like Phil Collins… their songs are always playing somewhere on the radio. So John Denver is forever etched on my mind as music of a hopeful anticipation of a new life somewhere else. And zorching a cancer tumor is definitely full of hopeful anticipation.

After the treatment was over I got a printed schedule of treatment times, where I learned we were doing five radiation treatments, one each day on Tuesday, Wednesday, Thursday, Friday, and the following Monday, all around 2pm.

I had a nice appointment with my radiation oncologist, who is a very friendly and positive person, and we discussed all the things I should be keenly aware of, that might indicate a problem with the radiation treatments.

Then we headed home, but I convinced my wife to take me to the Q Shack for some barbeque since I was starving. Barbeque is such wonderful comfort food. One of my favorite songs is Barbeque by Robert Earl Keen. It kind of says it all. I should add this song to my chemo playlist because I often crave it after treatments.

Unfortunately, filling my tummy with barbeque, green beans, and okra after a good dose of radiation did upset it a bit, but… worth it!

About halfway through my late lunch I started feeling super-super tired and when we got home I thought it would be a nice idea to have a lie-down for a couple of minutes. I woke up four hours later, nicely refreshed though still tired. I poked around the house for a few hours, went out to my secret lab and put my new paperwork through my handy Fujitsu scanner, and uploaded it to my Google drive in case I needed to refer to it from anywhere. I cleaned up my desk in my secret lab, though it will never be considered clean by anyone but me, there are stacks of things to work on and pay attention to. I realized I hadn’t paid all my bills yet, so got a start on that and then sharpened my wife’s favorite knife and stropped it until it had a decent kitchen-sharp edge.

Before the radiation started my white blood cell count, leukocytes, and platelet counts were shockingly low, so my oncologist prescribed 0.6ml of Udenyca in a subcutaneous injection syringe. This is a drug that promotes white blood cell production in your bone marrow (it did work), but at what cost?

Good heavens! After seeing the price tag on this drug I was so nervous at the idea of messing up the injection that I went up to the infusion clinic for coaching on how to do it right. They couldn’t administer it for some legal mumbo-jumbo reasons, even though they can pump me full of chemotherapy every couple of weeks, so I had to be sure I knew what I was doing. When I got home I asked my wife to do it, and figured if she didn’t know the cost she wouldn’t be nervous about it. We decided to put it in the fat behind my arm, because after my last surgery she injected the first shot of blood thinner into my abdomen. She did it just like that Mia Wallace adrenaline scene in Pulp Fiction:

This time, thankfully, it was one of the most painless and easiest shots ever. The side effects of this drug were awful though. They warned me I might have sore bones afterward. A day later, the bones above my knees were aching a lot, and it migrated to my arms, then my back, and I had a couple days of just feeling miserable. I sure hope I never have to take that drug again. But it did work, raising my white blood cell count above the minimum normal value as promised.

I had four more rounds of radiation just like the first. This time I drove myself there and back. Getting radiation treatments is so much easier than chemotherapy. The fatigue is much, much, much worse but I don’t feel dizzy or swoony afterwards, and I don’t have that unsteady baby-giraffe walk the atropine gives me. So it was fine. With the remainder of the treatments I drove myself to Whole Foods to get a little lunch off the hot bar. I had to hold any food or drink for 3-4 hours before the treatments, because if my stomach was full it would displace the liver just slightly and we might radiate the wrong area. So with each treatment I stopped eating around midnight the night before, and had a 14-hour fast going when I went in for radiation treatments. I was super hungry after I got out.

Then I would drive myself not to home, but to work, as I felt guilty being out for a few hours in the middle of the day, every day, for five days. And the first day, I slept for four hours afterward.

The fatigue with the remainder of the treatments was still weighing heavily on me, not as bad as the first day, but at the end of my work day I went home and got right in bed.

For my wife’s birthday we took a little overnight trip to Ocean Isle Beach. We got there really late and we were starving but apparently OIB folks like to turn in early, and all the restaurants were closed except there was a bar in Shallotte called the Wing & Fish Company. They were super friendly, fast, and the waitress was very accommodating of our low-carb diet. She suggested dishes and sides that would work well for us. We had a really pleasant dining experience there and will definitely return in the future!

Wing and Fish Company. Good wings, good fish, good company!

I wanted to visit the NC Maritime Museum at Southport but it turns out it is closed on weekends — precisely when the tourists have the most need of it. That’s just silly. I’m going to have to take a day off to visit it next time. So we visited the local museum in Ocean Isle Beach, which was interesting and relaxing. It is the Museum of Coastal Carolina. It has the remains of a real shipwreck in one room… cool!

Then we went out on the beach and though I couldn’t do full immersion in the ocean because of my radiation marks and stickers, I waded out into the water which gave my feet a boost of lovely, healing relief! The FOLFOX chemotherapy rounds gave me pretty bad neuropathy in my feet and hands that gets a bit better when we hold off on chemotherapy, but it certainly doesn’t get better while I’m on FOLFIRI+Bev. The ocean is amazing though, when I am in the water everything feels perfectly neutral and I realize how irritating the neuropathy is the rest of the time. I have been taking 600mg per day of R-alpha lipoic acid and after months, I feel like it’s starting to have a positive effect, especially in my hands which get more of a daily workout.

We hurried back home because the next day our youngest child had the first day of his senior year in high school, and we wanted to visit my mother-in-law at the hospital after her knee replacement surgery.

So I tolerated the radiation treatments pretty well on the whole, and side effects were minimal. I will have a follow-up CT scan on October 26 to assess how the treatment worked. It takes a couple months for all the radiated cells to realize they have no workable DNA and to drop dead, so that’s the reason for the long wait.

In the next post I’ll talk about resuming Chemotherapy (#30!) on September 26.

A Friend from Halfway Around the World (Chemotherapy #29)

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I got a surprise message from one of my oldest friends, M.S.S. I don’t mean that he’s aged, just that we became friends a long, long time ago when I was 11 and he was 10. I had just moved to California and even though all the cliques were already solidly formed, he was super friendly and always eager to make me feel welcome.

Growing up as an Army brat, we moved a lot. I often got in big trouble when I was very young, and I also managed to get my friends in trouble as well. A lot of innocent people followed my lead and we all ended up getting into hot water because of it. I was pretty self-focused and I realized that my best friends were always the people who honestly pointed out the qualities I had that really irritated them, and the ways they wished I could improve. And each time I moved, I would resolve to stop being the person who hurt my friends. What a special opportunity it was to move and meet all new people who didn’t know all my faults and shortcomings. I would just pretend I was a person who didn’t have those faults, and before long they were gone (or lessened), and I felt better about who I was with each big upheaval of a move to another place.

My friend M. was very understated. I don’t remember him ever getting angry with me or lecturing me about my faults. Instead, he led by way of example. He was a bright light in the darkness. I still got him into trouble from time to time, but he had such a warm and caring heart that I really wanted to be like that. And somehow it started a ball rolling that changed me forever. I was also really impatient, and I often would marvel at how serene he was even when frustrated.

So it was very special to get a message from him, and even more special to read the contents: before being deployed overseas, he wanted to fly halfway across the world for a visit. I was overjoyed! I was also pretty humbled that someone would make me the goal of such a long journey.

It had been about ten years since I saw him last, so I was eager to catch up. I picked him up at the airport and we caught up at my house for a while. He found a nice local hotel and arranged to stay there. I felt bad not being able to put him up in luxury but with 5 people in my house and 4 bedrooms, the best accommodation I have to offer is a couch or an easy chair, and those come with two psychotic cats who are hell-bent on rubbing their butts in your face all night long. The kids could give up one of their rooms but it would take a couple weeks of purification rituals to make that a clean and tidy, viable guest room option. Sigh.

On Monday we met my friend H. for lunch at Taco Addicts, one of our favorite taco spots. I love their choriqueso and tacos al pastor, but on my low-carb diet, tortillas were off the menu until I discovered La Banderita’s zero-net-carb street tacos… what a life saver! Anyway, I couldn’t have the choriqueso with carb-y tortilla chips but I wanted M. to try it, and he asked the server if they could make chicharrones, and they were perfect with choriqueso. So now that’s an order I make every time. I also found out that M. eats low carb/keto as well, so it made choosing places to eat and dishes that much easier.

I took him to the Sarah P. Duke Gardens on the campus of Duke University. It’s a place where I like to go to de-stress and unwind, surrounded by many beautiful places.

You can’t really come to North Carolina and not visit The Angus Barn, so at the suggestion of my good friend L., I took him to a nice dinner there. They were so accommodating of our dietary limitations, and even made my Caesar salad without croutons! Swoon! I had a 22oz steak (so I would have some leftovers for breakfast), that still makes my knees weak when I think about it.

I took my friend M. to the Turkish restaurant that me and my lunch bunch friends meet at every Wednesday, and we had an excellent meal and my friends really enjoyed visiting with him. It’s rare in general that I have a friend that my other friends get along with. My lunch bunch friends are a good exception to that rule, though, they are very gracious, welcoming, and full of hospitality. Classy folks!

On Tuesday, M. took me to the cancer center for my chemotherapy and met my oncologist, and hung out with me in the infusion clinic. My wife’s job had a staffing crisis due to the death of a beloved co-worker and it was convenient that M. could take me instead. He expertly drove my electric Smart car and I found out he has a Nissan Leaf at home. We just have so many interesting parallels in our lives, like twins separated at… well, age 12 and 13 I guess.

Getting chemo with my old friend

We went for dinner at another of my favorite spots, Guglhupf, and ate outdoors on the terrace. Even though I’m often suffering from an unsettled stomach after getting chemotherapy, this time I was spared the side-effect and felt just fine having dinner. My tummy warned me not to over-do it, so I tried to respect that reminder.

And before too long, it was time to take M. back to the airport for his trip home. His flight to the west coast was on a commercial airline and fairly easy to schedule, but traveling the rest of the way home on military flights sounds like a bit of a dance and orchestration so I felt bad that his journey home would have a lot of stops and long waits. I deeply appreciate the dedication and perspiration it took to make it all the way to my city for a visit. It was worth the world to me though, and I had a long period of comfort and happiness afterward. What an amazing gift of his calming presence! I felt such peace, like everything is going to be okay. Really I can’t thank him enough!

The Forest and the Chemo that Wasn’t

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I tolerated my birthday chemotherapy very well, hardly suffering any side effects except some intensely burning poops the following Friday and Saturday as the chemo comes through my system. The steroid dexamethasone I took with the chemo tends to keep me up all night and screw up my blood sugars, but this time I did fall asleep and got about 5 hours of sleep before waking up. And with the low-carb diet my blood sugars are not as much of a problem, though they do peak up to about 123 — nothing like the 300s I was getting on a regular diet. Also the steroid gives me the worst crash about a day after I stop taking it. And because the side effects have been so low-key, I skipped taking Wednesday and Thursday’s dose. It made Wednesday pretty rough… I was so tired on my commute home from work that I had to focus intently or else fall asleep behind the wheel.

I took Friday off work to prepare for our summer vacation trip to Cook Forest PA. This year the entire family was going, which is exceptionally hard to make happen with everyone’s school and job commitments. The plan was to leave as soon as my wife got off work, maybe about 3pm. I puttered around and gathered our stuff together, consulted and revised my previous checklists, and prepared our minivan for the trip with an oil change and all fluids topped up. I found out at the last minute that my middle kid didn’t get off work until 7pm, so our new time of departure was around 8pm. It would be a late night drive to my sister’s house in the DC area. We were able to leave around 8pm and arrive a bit after midnight. Luckily no one else was crazy enough to drive to DC so late, and we didn’t encounter any significant traffic.

We stopped at an observation area in Maryland. Our middle kid wanted to stay in the car.

We spent the night at my sister’s place, my parents came over, and we all had a leisurely amazing keto breakfast. My sister made a great keto breakfast casserole that didn’t have potatoes in it; I have to make a mental note to get the recipe from her. Around lunchtime we departed for Cook Forest which is five hours by car if you don’t stop. Though we stopped in Altoona PA, about the halfway point, and had lunch at a Chili’s. It had been some time since we’d been to that restaurant chain, and the food was good, the service was incredibly friendly, and everyone left satisfied.

Lovely welcoming Altoona, thanks for a relaxing lunch!

We made it to Cook Forest in time for a great dinner at the cabin Aunt D. rented for the week, where we got to meet dozens of Grandma K’s family members we had not seen in at least a year. The neat thing about Aunt D.’s cabin was that it was the only place in Cook Forest that had a cellular signal. After dinner and fairly late at night, we checked into our hotel, some of us had a shower and got refreshed, and that was our Saturday.

Aunt D.’s Cabin in Cook Forest PA

The rest of the week we relaxed at Grandma K and Grandpa J’s cabin. I prepared keto-friendly side dishes that week like a Turkish-inspired salad with cherry tomatoes, feta, kalamata olives, red onions, cucumbers, parsley, balsamic vinegar and high-quality olive oil. I made some goat cheese guacamole a different night, and a sort of cole slaw but the mustard I had on hand was kind of spicy and it made the dish a bit weird.

Cruising down the Clarion River in perfect weather.

We had trips down the Clarion river in canoes and kayaks rented from the Pale Whale in Cooksburg, we hiked around the beautiful old-growth forest, and my middle child J. helped me deep-clean grandpa’s grill for the big rib dinner he always puts together one of the nights.

Our youngest son by a fallen tree in the beautiful forest.
Beautiful rays of sun made visible by smoke

I went along as co-pilot on a trip with Grandpa J. to fetch his 89-year-old sister, Sister J., in Cleveland to bring her back to our vacation. She is a Catholic nun who taught college physics in Cleveland for many years. Throughout the trip, I was exceptionally worried about the state of his right front brakes, which were starting to grind down the rotor and make noise every time he stopped or slowed down, and the Cook Forest roads are hilly and winding, and brakes are a good thing to have in those kind of situations. Plus, the highway department was blocking off lanes and pouring new asphalt, as evidenced by these mysterious signs:

Is it just my love of Mexican food, or does this sign promise some deliciousness ahead?

We made it to Cleveland, and Sister J’s friend, Sister P., made us a fantastic cold lunch of salad, cold cuts, cheese and bread. We had a couple hours of good conversation where I learned that Sister J. didn’t have much of a plan for how to get home. She said that Harriet Tubman often left her plans in the hands of God, and somehow she would get home too. It turned out in the end, after a lot of tricky back-and-forth phone messages from a region with virtually no cellphone coverage, that a friend came, picked her up in Clarion PA and brought her back to Cleveland on Sunday.

Luckily we found Sister J. in Cleveland, so this sign was on point.

We had a nice trip back from Cleveland with the brakes squealing on turns now, very concerning. But it was wonderful to chat with Sister J., and listen to her and her brother Grandpa J. reminisce and tell stories. We got back to Cook Forest in time to have a wonderful salmon dinner at Aunt G.’s cabin, and we brought along enough supplies for the kids to make smores around the campfire. I learned that the whole annual Cook Forest vacation and celebration is due to Sister J.’s suggestion, decades ago, that people meet there as a middle ground. It is handy that relatives and friends from New York City, New Jersey, Virginia, North Carolina, California, and Maryland (to name a few), can converge there and spend time together every year.

My wife and Sister J. by the campfire

The next day was preparation day for the Big Rib Dinner. It took all day to prepare, peel membrane off the ribs, marinate them, par-boil them, and I cut tons of garlic, ginger, and did anything else that was handed to me to do. Grandpa J. was under a lot of stress and worry, and prepared more ribs than ever before, so even with the support he was in a frenzy to get it all done. Then we heard there would be some very bad weather around dinnertime, so we went to the picnic shelter at Cook Forest Fun Park for dinner and pretty much the moment we stopped eating, a huge storm blew in with powerful winds and blew much of our stuff away, then deluged us with heavy, heavy rain. We had to abandon ship and leave a lot of stuff in the shelter and retrieve it early the next morning.

Congregating in the shelter before the storm.

After all the chaos, Grandpa J. announced this was the last year he was doing the rib dinner. I hope he changes his mind and just makes a smaller batch; we had leftover ribs for days (which is not a terrible fate).

At the cabin in Cook Forest, back row: Grandpa J., our fourth child J.H., Sister J., second child I.G., third child J.J., front row: my lovely wife, Grandma K, and little ol’ me.

Somehow on the way home, the bare-metal whining brake pad on Grandpa J.’s car got so thin it slipped out of the caliper and vanished into the night, making braking very difficult and treacherous. We had to find a local garage that was available to do the job. We went to Aunt D.’s cabin to use the internet and found a shop in Sigel PA that ordered the parts from my description of the problem and model of the car, and was able to quickly install new pads and a new rotor and get the car back on the road before the trip home. Thank goodness that worked out!

I have to make a side paragraph about this, but the people in Clarion, Cook Forest, and vicinity are incredibly nice and welcoming. Time and time again I was blown away by their friendliness and helpfulness, just a bunch of outstanding people.

So we drove back to DC on Saturday and stopped again in Altoona, this time at a famous spot called Al’s Tavern, which is well-known for its chicken wings.

We visited Al’s Tavern in Altoona for a late lunch. Fantastic!

We stayed the night again at my sister’s house and got to visit her and my parents a bit more than on the trip north. We had a fantastic huge spread of taco dinner with zero-net-carb La Banderita Street Taco tortillas, and my blood sugar didn’t spike at all. My sister takes such good care of me and everyone she loves, and I am eternally grateful.

The Chemo That Wasn’t

We got home in time for me to get my port accessed for lab tests and chemotherapy. My CEA was up a tiny bit, 7%, to 5.9. It’s not as bad as a year ago, when it was doubling every couple of weeks, and we just had a good 33% drop in CEA, so I was only a bit concerned about the increase.

CEA Levels

My HgbA1c was 5.7. My cholesterol was 152: LDL 41, HDL 34 and Triglycerides 465. I’m still losing weight and my fat cells are releasing tryglycerides into my bloodstream, so that explains the high value there. My white blood cell count was very low at 2.0×10^9/L (normal low is 3.0), my platelets were 57×10^9/L (normal low is 150). My neutrophil count was 1.0×10^9/L (normal low is 2.0). As such, my oncologist determined we should skip chemo this time and give my body a chance to rebuild its defenses. We also discussed whether we should go to 3 week cycles, as I have read on the internet that a lot of people doing low carb diet plus chemotherapy, are able to tolerate chemo better and live much longer on a 3-week cycle. We will move to that soon after the next CT scan results, if things look favorable for that.

I can’t complain at all about not having chemo, I was a little worried that my CEA was going to increase a lot without it. As much as you hate chemotherapy and its side effects, it is a warm comfortable blanket where at least you’re doing something to hold down the cancer, and being without it is stressful.

So from July 25 until August 8, I am free as a bird to enjoy life, get more exercise steps in, and build myself back up for the next round!

Rest and Recharge (Chemotherapy #28)

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I haven’t posted to the blog in a very long while because WordPress automatically upgraded to version 6.3 and I seemed to have lost everything.  I got into the FTP site and the database site and confirmed all the files were still there, and the databases and attachments intact, so I didn’t panic but I also didn’t have time to deal with the problem.  Life has been incredibly busy lately (maybe too busy), so for the first time in my life I think, I engaged the MyTime support team at Network Solutions (my hosting provider), who I essentially have been paying to do nothing for several months, and after a couple back-and-forths and near-successes, today they finally got the site back up and working.  I am so grateful since I don’t know all that much about WordPress and have been too busy wrapping up my life to deal with those details right now.  At least since the last blog disaster, I have my site backing up every day so not much would be lost.

Sending much love and gratefulness to Network Solutions!  Thanks!!

Chemo #28 was scheduled on my birthday and the day before that our company gave us a Global Recharge Day off work.  Woot!  So I decided to make an overnight trip to Beaufort NC to visit the NC Maritime Museum there.  There are three Maritime Museums in North Carolina, one in Beaufort, one in Southport, and one at Hatteras.  One of my goals is to visit them all and peruse the exhibits completely at my leisure, without people asking when we’re going to leave or telling me they’re bored.

Model of the Queen Anne’s Revenge

The big draw of the museum for me was the preserved artifacts from the wreck of Blackbeard’s Queen Anne’s Revenge, which is located in about 25 feet of water off Fort Macon near Atlantic Beach and the Beaufort Inlet.

Fort Macon NC
Fort Macon

The museum was very nice, and had some amazing artifacts including an unbroken wine glass, tons of cannons, cannonballs, powder, bells, weights and scales, tools, and the like.  There was also a lot of information and artifacts of Otway Burns, who was a privateer in the War of 1812.  Earlier I had seen his grave in the cemetery and it has a big cannon on it, so you couldn’t really miss it:

Privateer Otway Burns’ Grave

Also in the graveyard was the burial site of a little girl who died on the Atlantic crossing, and was placed in an empty rum barrel and buried on arrival.  People leave little gifts and toys for her.

Grave of the Girl in the Rum Barrel

Upon leaving the Maritime Museum, there is a cute little garden next door that is maintained by the town’s master gardeners.

A beautiful garden by the museum

For many years, Beaufort was a center of a menhaden fishery operation.  People in town say that it stank for many years until the menhaden ran dry and the processing plants closed down.  The plants made fish oil and fertilizer that was shipped inland on trains.  In the center of town near the museum there is a beautiful monument to the Menhaden.

The Menhaden Monument

Also in town is a monument to Michael John Smith, and the local airport is also named for him.  He was the pilot of the Space Shuttle Challenger and died in the explosion.

Michael John Smith Monument

I stopped in to play a couple games of pool at the Royal James Cafe and the locals were having a 9-ball tournament I was too chicken to play in, mostly because the tables were simply awful.  I wasn’t brave enough to tackle the menu as I wasn’t much in the mood for bar food that day.

The Royal James Cafe (and Pool Hall)
The locals playing a 9-ball tournament

I stayed in the Beaufort Hotel, which was once the site of a fish processing plant.  Everyone in town seems very happy to have the fish plant replaced with a posh hotel.  I got to swim in the pool and enjoyed wearing their plush bathrobe and slippers.  I had a wonderful night’s sleep, the best I can remember in a long time.  For breakfast the next morning, they made all kinds of keto substitutions for me like adding goat cheese and avocado to my breakfast of crab cakes with poached egg and Hollandaise sauce, and they gave me a complimentary cheesecake dessert for my birthday.  Cheesecake is not on the low-carb menu, but I didn’t have a lot of it and it was my birthday weekend after all.  The Beaufort Hotel treats you like royalty, it was exceptionally nice.

The Lobby of the Beaufort Hotel

Driving around Beaufort, it was hard not to fall in love with the tidy houses with cedar planking, and the trees were incredibly shady and delightfully crooked.  The whole town is like something out of a movie, it was not too crowded with tourists and the locals were exceptionally friendly.

The tree-covered Front Street

On the road I had lunch at the famous King’s Barbeque, though in the market side and not the restaurant side.  Just incredible barbeque, in a cute historic setting.  It was the best!

I’m still working out how to make good selfies.  I look really goofy in this photo at King’s Barbeque.

My Birthday Chemotherapy

The next day I woke up for my lab appointment, oncologist visit and chemotherapy infusion.  Chemo #28!  This cycle, my carcinoembryonic Antigen (CEA) levels were down 33%!  This is a miraculous reduction!  What a wonderful birthday present!  I think the low carb is working.  There is one curious thing I learned later from my eye doctor, Dr. Silver.  She said that I should try adding doxycycline for 10-day stretches alternated with vitamin C.  Just by a weird coincidence, I had a skin infection more than a week before my birthday and my primary care providers gave me 10 days of doxycycline to deal with it.  Before or after this, I have never had such a dramatic reduction in CEA with chemotherapy.  Previous reductions were through radical surgery, ablation, or radiation killing tumors outright.  An interesting coincidence?!

A graph of my CEA results over the last couple years.

My lab results came back fairly positive.  My white blood cell count was low at 2.2×10^9/L (3.2 is the low target), platelets were 105×10^9/L (150 is the low target), Hemoglobin was 13.6 g/dL (13.7 is the low target), Neutrophils were low at 1.2×10^9/L (2.0 is the low target), otherwise OK. 

My oncologist is quite upset at my weight loss.  I am expected to stay around 204 lbs and I was at 185.  He told me to “liberalize” my diet.

So we proceeded with the FOLFIRI+BEV regimen (irinotecan, 5-fluouroracil, and bevacizumab).  The infusion was pretty easy, a bit of cramping during infusion but  we finished and I went home with the 5-FU chemo football.

I woke up in the middle of the night and had no nausea whatsoever.  This is very common now since I moved to the low-carb diet.  In fact, I didn’t have many terrible side-effects at all except fatigue on Wednesday after the dexamethasone wore off, and I needed 20-minute afternoon naps on Thursday and Friday.

The next day my wife presented me with an amazing keto birthday cake inspired by Raspberry Zingers (my favorite!), and made of almond flour, splenda, lots of butter and egg.  It had a splenda-sweetened whipped cream frosting with dehydrated raspberries powdered in a blender, and a few raspberries on top.  It was incredible.  I think she is the only person in North Carolina who can make such amazing Keto confections.

My wife made me this amazing Keto birthday cake!

A day later I visited my endocrinologist.  Dr. Becker looked at my lab results and announced that with an HgbA1C of 5.7, and an average blood glucose on my Freestyle Libre of 94, I am no longer diabetic and he took me off my Jardiance medicine.  It only really helps when your blood sugar goes above 150 — it helps your kidneys pee out the excess blood sugar and as it has a slight diuretic effect, it may be causing me to lose more weight on the low carb diet than I should be losing.  Since it costs my insurance about $600 a month, this is nice to get rid of.  He wrote me a prescription for glimeperide 4mg in case I need it, 2mg in the morning and 2mg at night, it should help me keep blood sugars down and gain weight or at least not lose it.  It is an old reliable generic drug and costs only a couple of dollars a month.

I also visited the nutritionist at our work Health Center and after listening to my problems with low carb/keto, she announced I was the first person EVER to ask her how to gain weight on Keto.  She recommended bile salts to assist where my removed gall bladder once perfectly allowed me to digest fats, and recommended adding nuts like walnuts and pecans to get a few more calories and nutrients.

I was glad that Chemotherapy #28 went so well, and that I felt great by the weekend, because next we went on a week-long family vacation to Cook Forest PA. But more on that in a later posting!

Independence Day (Chemotherapy #27)

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I had a different sort of independence day today. It was a day of being independent from being needed or useful. I apologize to the friends and family who wanted to see or hear from me today, it just wasn’t going to be possible. The last few days have been incredibly stressful and I can’t even point to a coherent reason why. Things have just been too much, and I just don’t have any energy left, and worrying about anything just gives me a headache.

I haven’t been sleeping well. I have had vacations to plan, rooms to book, things to prepare, things to fix, things to sort and things to sell, stuff I need to get done but can’t find the time to do, emails to respond to, text messages, bills, car registrations, and dirty dishes to name a just a few of the stressors.

I’m also in a sort of limbo land between my last CT scan and the next one in mid-August. I’m anxious to know whether my diet and chemotherapy are having any effect on the cancer growth. My goal at this point is to coexist with the cancer, check its growth and mutation, and thereby survive as long as possible without progression or side effects.

Chemotherapy #27 was very tolerable. The irinotecan dose was reduced a bit because of my low platelets (66×10ˆ9/L instead of a healthy minimum of 150). I had virtually no side effects — no nausea, no mouth sores, no bloody noses, no tummyache, no headaches, not much gastrointestinal distress, though I am increasingly fatigued by the chemo and it’s good to have a nap the few days after chemo. I avoided taking my dexamethasone for days 2 and 3 because there were really no side effects to minimize, so I got much better sleep.

The low-carb diet is going very well and studies that say chemo is easier on a low-carb diet seem to be on the money. I have taken my average blood glucose levels from about 143 down to 99, and I am almost always 100% in range now. I’m hoping this stresses the cancer and helps the chemotherapy work better.

For Father’s Day, my wife made me an almond-flour low-carb set of cupcakes with whipped cream, Splenda, and powdered freeze-dried raspberries. It was so delicious and a special treat! She has such amazing baking talents working with dietary restrictions!

Low-Carb Raspberry Cupcake for Father's Day
Low-Carb Raspberry Cupcake for Father’s Day

We had Father’s Day dinner at Armadillo Grill in Carrboro, one of our favorite dinner spots, and it’s kind of halfway between us and my mother and father-in-law’s house. It is always wonderful to spend time with Grandma K and Grandpa J.

Father's Day Dinner
A lovely dinner meeting for Father’s day at Armadillo Grill

On July 1 our family traveled down to Myrtle Beach, SC to attend my niece B.’s wedding to her husband B. I am over the moon to have him in our family, he is the most kind and steadfast partner I can ever imagine. The wedding was in the aquarium in front of a tank full of stingrays, and the ceremony was very peaceful as a result.

As a bonus, the shark tank was close by in case anyone misbehaved. All weddings should be like this! The reception was held in a banquet room at the aquarium, with a local restaurant doing a fantastic brunch catering with Shrimp and Grits, eggs, sausage, fruit, hash browns, it was a very tasty spread.

At the wedding my Aunt R. and Aunt J. came all the way from upstate New York and Aunt R. made me the most amazing birthday strawberry-rhubarb pie. Some days I spend my precious 20 grams of carbs on blissful bites of the pie, and I’ve frozen three quarters of it for indulgences in the near future! So beautiful and delicious!

Aunt R.'s Strawberry-Rhubarb Birthday Pie
Aunt R’s Strawberry-Rhubarb Birthday Pie!!

Things were fairly rushed on the Myrtle Beach trip, and I was a little disappointed I never got to see the actual beach or put my toes into the water. Being a water sign, I need some regular beachy recharge time for my physical and mental health. But it was July 4th weekend, it was quite busy and me and the kids decided parking would be a hassle, so we headed home after a nice breakfast with my sister S, brother-in-law JD, and the newlyweds B&B.

It’s another week until the next chemotherapy round and I’m going to take a little beach vacation for my birthday!

Stayin’ Alive (Chemotherapy #26)

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You know it’s all right, it’s okay
I’ll live to see another day

The news that my cancer has metastasized to Stage IV oligometastatic peritoneal cancer, frankly, is a big letdown after having endured so much. And it’s a bit of a mouthful when using big four-dollar words like oligometastatic (I’ll save you the trouble of looking it up: basically it just means it has spread to less than five areas of metastasis).

I am a little surprised that I haven’t felt any kind of emotional breakdown. I haven’t even cried about it — maybe that comes later? Instead I feel just a weird sense of peace. It is kind of a blessing to have some idea of when my end might come. I know there will be some really sucky days ahead, and I pray for the strength to endure those days with some measure of grace and that I can keep my optimism and personality intact. I really don’t want the people around me to suffer, and I don’t want to be remembered for whatever wounded personality I might have at the end.

I would rather be remembered for loving everyone unconditionally, without judgement, and for encouraging everyone I love to be the very best version of themselves. Love is the most powerful, limitless, and absolutely radical thing I have ever experienced in my life. It uplifts and transforms; it sustains and heals.

So forgive me if I wax sentimental for a moment here. For me, all moral, religious, and spiritual meaning begins and ends with these three simple words: God is love. Everything else flows from that, and life clicks into place. You don’t even have to believe in God; maybe you could just shave that little tautology down to LOVE. Or maybe love is all you need, if you are a Beatles fan. Every choice you make, every position you take, ask yourself if you are choosing love, or are you choosing something else?

No matter where I find myself in my relationships, my work, or even while driving my car (this last one is a difficult, ongoing work in progress for me), my thoughts keep coming back, decade after decade, to this simple passage from my favorite chapter in the Bible:

Love is patient, love is kind. It is not jealous, it does not boast, it is not proud. It is not rude, it does not seek its own interests, it is not easily angered, it keeps no record of wrongs. Love does not rejoice over evil but rejoices with the truth. It bears all things, believes all things, hopes all things, endures all things. Love never fails.

Corinthians 13: 4-8

You’ve heard it at probably every wedding you’ve ever gone to, and for good reason. It should also probably be read at the start of every friendship, at every reunion, maybe sung in place of the National Anthem before ball games, and definitely spoken aloud — repeatedly — at all political gatherings and sessions of Congress.

I’ll repeat an earlier sentence now, as a transition back to Earth from my heavy little theology: love uplifts and transforms; it sustains and heals.

I am so thankful and grateful for all the reaching out people have done in the last weeks, sending messages, cards, books, hugs, thoughts, and prayers. Being surrounded by the warmth of so much love lifts my spirits and fills my days with joy. Thank you all so very, very much.

The Big Sugar Embargo

I am trying everything that I can to enjoy every day and not to make things easy for the cancer to grow. There seem to be (at least) two schools of thought about treating cancer: first, that cancer is a genetic disease that can be eliminated by finding a drug that targets mutations and delivers powerful poisonous drugs to the cancer cells and kills them; second, that cancer is a metabolic disease caused by, frankly, me being a fat diabetic pig who was playing with fire by eating sugar, and got burned when it supercharged some baby cancer cells and caused them to go haywire.

The basic problem with colorectal cancer is that it starts slowly and gains a huge number of mutations along the way, figuratively snowballing down a mountain of sugar towards oblivion. You can treat it with chemotherapy but if the chemo works, at best it kills off most of the cells and those cancer cells that survive are the ones that are mutated to be resistant to the chemotherapy drug. So you have to change to other chemotherapy drugs that might work on the resistant strains, and most of those can be killed with the right drug… but you might waste 12 weeks on each drug change to see if it’s working, and if it isn’t you only have a short period of time before you run out of options. If it is working, you have a short period of time before the cells that survived the second drug proliferate and need to be attacked with a third drug. Chemotherapy is a losing game of whack-a-mole.

You read every week about a new miracle drug that’s been developed that cures 99% of the population it was tested on, so you ask, “why can’t we try one of those drugs?” The answer is that those drugs are being tested in drug trials that take more than a decade to pass muster and get FDA approval. Everyone who has cancer now is like a ragamuffin little kid looking through the candy shop window at the shiny new drugs, wishing they could have one.

But what if there was a way to kill all the cancer cells no matter whether they had one mutation or a thousand? What one weakness do all cancer cells share that can cause your immune system to identify them and throw them on the autophagy fire? Even if you slow the cancer instead of destroying it, you can have more time to spend with your loved ones, maybe enough to watch your youngest son graduate high school… or even college?

I had started many months ago reading a book called How to Starve Cancer and a lot of the ideas in the book made a lot of sense. It takes the metabolic disease school of thought, where cancer is not something easily beaten, but rather something that feeds on sugar and glutamine, so you can eliminate it or hold it back by literally starving it.

Cancer cells have lost their mitochondria and aren’t able to use respiration (oxygen) to convert sugar into energy. Instead, cancer cells use fermentation to release energy from sugar, and it requires them to consume 21 times more sugar in order to divide, than normal cells do.

Lots of people have had success with 21-day water fasts to virtually eliminate their cancer tumors, but the moment they stop, the cancer usually starts to grow again. I think the fast is more risky and my oncologist doesn’t want me to lose weight.

From other sources like Jason Fung’s The Cancer Code I gather that intermittent fasting and keto diets can put a lot of stress on the cancer cells so that when they are exposed to chemotherapy, they are more easily destroyed. Cancer cells can’t use ketones whereas your brain and body are able to use them fine, after a short period of adjustment. As an added benefit, studies on mice show that in a fasting state, they suffer fewer symptoms from the chemotherapy because in a state of glucose scarcity your body’s normal cells go into a protective maintenance state that helps them survive the chemotherapy, and cancer cells have lost that option entirely because they are stuck in a growth mode.

I am no expert in Keto diets, and I’ve always thought that most people who do Keto are a little crazy, kind of like those crossfit loonies, getting super excited over macros and other terms I don’t understand yet. But if it could slow down my cancer I’m all for learning a bit about it.

On the day of my diagnosis, May 22, I immediately returned to my strictest version of my Type 2 Diabetes diet. My endocrinologist really liked my results and encouraged me to keep them up, but it was a lot of effort. Basically the plan there was to take in less than 20 grams of sugar a day. Carbs from vegetables of any kind were okay, the more fiber the better, and with an eye towards foods with a low glycemic index.

My low-carb typical breakfast

This time, though, I was going to keep under 20 grams of net carbohydrates a day (so fiber grams don’t count). This was immediately successful; my blood sugar average for the next two weeks went from 143 to 99, and I never had a blood sugar higher than 112.

I resolved to take that approach while I learned more about Keto and incorporated it into my diet, all while following my oncologist’s orders and not losing weight. Spoiler alert: I failed at that. Dancing on the Keto stage while trying not to lose any weight is truly a perverted thing to attempt, but I’m trying it anyway.

So now I’ll talk about the turns my life took in the last few weeks, while I strictly avoided sugar of any and all kinds.

Memorial Day Adventures

It has been an eventful and interesting few weeks since my last post, and I’ll go into quite some detail of it here. Editor’s Note: there is so much random crap in these sections that I’m putting headings on each section so that you don’t feel guilty about skipping the irrelevant humdrum details.

Memorial day weekend came right after Tuesday’s scan and diagnosis, and my oldest son has been bugging me for a while to go for a trip to my sister’s beach house, and Memorial Day weekend seemed like the most sensible time to do it. There wouldn’t be a bunch of traffic or extra people in town, right?!?! On such short notice, due to the schedule of everyone’s days off, we had to leave either my wife or my middle child at home and go either Friday night or Saturday night. Our middle child wanted some relaxation time since they had to work on Memorial Day itself and would lose a day off in the process, so we made the drive to the beach on a very drizzly Friday night. We checked the weather ahead and double-checked everyone’s mood, as it would be 100% light rain the whole time we were there, but everyone was eager to go. We left around 7pm and traffic was not even remotely bad. We pulled in to the beach house around 10pm, ate some snacks of nitrate-free prosciutto and goat cheese, and I brought one of the now-aging 330ml bottles of Olde Hickory’s Event Horizon beer and sipped a couple teaspoons of it while my wife drank the rest. We went to bed shortly afterwards. I had such a peaceful, restful night’s sleep!

Also, everyone let me sleep in on Saturday morning which was a rare treat. We went to our favorite little diner for breakfast, Castaway Grill, and it was absolutely packed. We had to wait about 20 minutes to be seated, and only two waitresses covered the entire place with surprising efficiency considering it was short-staffed that day, and busier than I had ever seen it. Sure there were some little forgotten things like syrup and ketchup, and I got sweet tea instead of the unsweet I requested, but these things were resolved in a reasonable amount of time and with great kindness and cheer. Some cranky entitled customers grumbled a great deal about some very minor inconveniences and waits; but there is no making everyone happy, especially when they have forgotten the part of 1 Corinthians 13 that says: love is patient.

Sign at the Castaway Grill

The weather was indeed drizzly on Saturday, and the wind gusts were almost strong enough to lean into and be held up by the force of it. We took a lengthy walk on the completely deserted beach, where the waves violently pounded the shore and each other, crashing loudly and sending spray everywhere. So many people really missed out on a lovely, energetic coastline that day. Afterwards we tried to go to lunch but all the people you would expect would be on the beach were in lines out the doors of all the restaurants in town.

House’s Place at the Beach

We found a restaurant nearby called House’s Place at the Beach that Google Maps said wasn’t too busy. We drove there to find it was in the middle of a resort and plastered with members only signs. The important thing to not getting caught is to act like you belong there and doing so, we had a lovely meal of Caesar salads with rare grilled ahi tuna, peel and eat Old Bay-seasoned shrimp, calamari, a shrimp po-boy, and a burger with a fried egg on top. I wasn’t eating carbs so I made a crouton-henge on my plate. How clever, right? I decided I wasn’t going to play by their rules any more! I do as I please!

Crouton-henge

Then we lounged around the beach house, had ice cream in town (or more accurately, I enviously frothed at the mouth while I watched our kids have ice cream in town since I am avoiding sugar), and left town in the early evening, headed for home.

Me and the kids on a very windy beach

On Sunday, I drove up to Richmond to visit my old college friend, B. We went to our favorite restaurant, Kuba Kuba, and they made me a carb-free bowl of Cuban roast pork covered with melted swiss cheese, with a side of delicious garlic-sauteed spinach. It was completely off the menu, something they made for B. when he was doing low-carb some years back. It was unbelievably good! We went to the Roosevelt for dinner and I had the seared scallops with midland cream peas, garlic scapes, quinoa and lardo. I skipped the quinoa but devoured the rest. The scallops were perfectly done. Every dish at the Roosevelt is mouth-watering.

The Roosevelt Seared Scallops

Monday was Memorial Day and I started by installing a lighted makeup mirror on the wall in the bathroom. Then I sat down in my recliner and got to thinking about stuff. I have all this stuff lying around. Some stuff that is broken and needs an hour or so invested in fixing it, or books I absolutely had to own but then only read once. I have lead-acid car batteries. I have a hundred plug-in adapters — power converters that would be a lot better situated at Toschi station. I still have a couple Buffalo LinkTheater units that I used to stream DVDs from a NAS before Plex ever existed. I have hard drives — even sizes like 120GB! Why did I keep this? Did I think I was going to live forever? Who has time to re-solder all the connections on 20 gaming headsets? What am I supposed to do with this PalmPilot? Oh, a Kyocera PalmOS Phone! X-10 switches? Good heavens.

I guess it is to be expected that there is something markedly different about your “save” pile when you get a terminal cancer diagnosis. I might have 2 years left or 20 but I won’t need any of this stuff in the U-Haul behind my hearse, that’s for sure.

It’s high time for a good day of döstädning, though I don’t think Swedish Death Cleaning was meant to be taken quite this literally. Regardless, a bunch of stuff went into the trash today, for electronics recycling, landfill, and the like. Stuff is going in piles for Freecycle, the thrift store, eBay, or the bulletin board at work. I like to think that my Memorial Day was spent de-memorializing some possessions, like the way a good degaussing removes a magnetic charge.

Working and Shooting Some Pool

I worked 3 more days in the work week, and I got to cap it off by playing in my Thursday APA double jeopardy billiards league. I won an 8-ball match against a rank 3 player (I am ranked a 4), in a 3-2 contest where I won 3 matches and they didn’t win any matches (scoring 3 points to 0 points). Then I beat a rank 5 player in 9-ball, 15 points to 5, meaning I sunk 31 out of 31 balls needed, and he sunk 23 of the 38 he needed. I was playing well, and was stoked to win since I have a secret fantasy that I will move up to a rank 5 before the end of my days. I feel like I’m close on this one, I’m winning 75% of my matches these days.

Visiting Family and My Trailer Woes

I took Friday June 2nd off work to drive up to visit my parents. I planned on bringing my minivan and trailer so that I could bring back some furniture a friend of my Mom’s was giving away to a good home. My two oldest kids are getting an apartment together in a few months and moving out on their own, and we’re trying to get them set up with the basics, and this would be a good opportunity for them to find some nice bedroom furniture. On hearing the plan to bring bulky objects home in the trailer, my oldest son wanted to come along and keep me from lifting and moving heavy stuff, and he wanted to get to visit his grandparents, and aunt and uncle there. We also thought it would be good for him to help decide what furniture he and our middle child J. would want for their apartment. Unfortunately he didn’t have the day off and got permission to stop working around 4pm to leave early. So we planned on getting up to my parents’ house around 8pm.

Not being able to leave before lunchtime, I decided to finish a couple tasks at work and attend a meeting, then I did a little organization in my garage and with the help of my youngest son J., we hooked the trailer up to the minivan and I tested the lights. Nothing happened. No left turn, no right turn, no running lights whatsoever. Not good. So I checked the wires and noticed the trailer ground wire had dry-rotted and broken, so I reattached it by stripping the wire and twisting it together. Nothing happened. I traced it down to another crack where the wire was broken, and stripped and twisted that one. I got a little glow from the right turn signal, but nothing on the left and no running lights. I was always worried about this trailer’s lights anyway, they were barely visible unless it was pitch black outside, and I have long avoided driving with it at night because I know I’ll get rear-ended by someone who can’t see the thing.

I had a plan before the cancer diagnosis, to completely re-wire the trailer lights. I had a $20 off coupon I got from Northern Tools for buying some scaffolding, and found a super-bright LED trailer light kit on sale for $29.99 (reg $39.99), and walked away with it for $9.99. Unfortunately I hadn’t done quite enough death cleaning to come across the unopened box of trailer lights, but I had several hours to kill before my son got off work, and I began a thorough search of my piles of crap looking for the trailer lights. I found them on the floor under some boxes and books, next to my rolling tool box, and set to work disassembling the lights on the trailer. I used the existing wiring to pull the new wiring through the trailer frame, split it to the left and right, and wire the orange marker lights. I got out my good Weller soldering iron and stripped the running light wires, soldered them to the amber marker light, grounded those, and used heat-shrink tubing to get a good water-resistant seal around the connections.

About that time my wife came home from work and I enlisted her help in handing me stuff, which she cheerfully did while we talked about all manner of interesting things. I discovered that one of the the steel tubes that are welded to the edge of the trailer bed, that protect the wiring as it goes back to the tail lights, was chock full of an advanced civilization of very, very, very tiny little black ants. I ripped the wire out, destroying the ant nest, before remembering I should have used the old wire to fish through the new wire, so my wife took on the task of cleaning out the tube with dowels and fishing the new wire through. I wired the tail lights in, soldered them and protected them with heat shrink tubing, and the completed job was a joy to behold!

We tested the lights: right turn works; left turn works; hazards work; but no running lights. It occurred to me to use my little trailer light socket test dongle to make sure the minivan’s output was working, and it wasn’t. So I concluded there must be a fuse somewhere that was blown, what with all the damaged wires we started this adventure with. I vaguely remembered when I installed the trailer hitch that there was an included fuse, but I had to search the internet to learn that it was passenger side fuse box mini fuse #5, 7.5A, that was burnt out. I went to two auto parts stores and was coming back when my oldest son was packed and ready to go, and he called to ask where I was and what in the world I could be doing. Soon I was home, the fuse was replaced, and the trailer lights worked brilliantly — by which I mean, they were bright even in the daytime.

We had a pretty uneventful trip to my parents’ house. My sister asked me when I called to let her know I was leaving, if I wanted to stay in her guest room or with my parents, and I said I should stay with the parents this time because Mom complained last time that she didn’t get to see me after I woke up, all the way until after we had breakfast at my sister’s house. So that Mom could get maximum exposure I would stay with Mom & Dad.

That was a big mistake. The 5th of June was the hottest day so far this year I think, like 85 degrees, and my parents didn’t have the air conditioning on so it was 82 degrees inside the house. I was sweating and dying, panting like a dog. My son asked if we could turn on the A/C and my father said no, he was just about to put on a sweater, it was so cold in the house and he was shivering. My parents would complain about the cold on the surface of the Sun. So my son slept downstairs in the guest room where it is cool and comfortable, and I slept in my old bedroom where the smoke from the fire and brimstone made me cough and choke all night. I closed the door and opened a window, and luckily it was cooling down outside so I got comfortable in a couple hours.

Saturday we went to the Juke Box Diner for lunch, it is a 50s-style diner but with Greek owners, so there are awesome foods on the menu like gyros and shawarma. The food was very good and we had a fantastic meal. The wait staff were brimming with hospitality and kindness, all in all a wonderful experience.

Juke Box Diner

Afterwards we went to my Mom’s friend J.’s house to look at the furniture she wanted to find new homes for. My son settled on two dressers, two end-tables, and one kitchen table. We came back home, Dad brought us to Harbor Freight Salvage to buy a half-dozen moving blankets, tarps and straps, then we returned home and had a rest.

On Saturday night at 7pm my high school friend JK planned to pick me up for dinner and visit a little with my parents. We had an 8pm reservation I think, at a restaurant of his choosing. But when JK showed up, he had our friend YK with him. I haven’t seen YK since my wedding 29 years ago! He looked pretty much exactly the same! I was excited to get to catch up with both of them, while we drove to Tyson’s Corner and went to The Capital Grille for dinner. We had a calamari appetizer, prosciutto-wrapped mozzarella, and I had a 10 ounce filet mignon, sliced with mushrooms and onions. It was absolutely melt-in-your-mouth tender and perfectly done. I still shudder when I think about how good dinner was… so many, many thanks to JK for setting up this fabulous reunion and for a fantastic evening with best friends. I also sipped some Cabernet Sauvignon, which was an amazing treat. I’m not on chemo yet, right?

Dinner with JK and YK

On Sunday we woke up early and brought the trailer with us, and my brother-in-law J. and my son loaded it up with 2 dressers, the kitchen table (upside down), end tables, and then we went back to my parents’ house and loaded up the lower part of an old Hoosier cabinet I want to restore and refinish. This isn’t my Grandma O’s old Hoosier cabinet, which my parents restored and I totally covet that amazing piece, but this is one that hasn’t had its bare oak wood painted, it needs some re-gluing and TLC.

The loading of the trailer totally flattened the left trailer tire and we had to fill it to 40 psi with one of those 12V plug-in air compressors before going to my Dad’s house and using his pancake compressor to fill both tires to 60 psi. They were showing the starting signs of rot, so we checked the internet everywhere to locate a spare, just in case. We found one on the way home in Dale City, but it was mis-inventoried was was actually a 15″ trailer tire instead of a 12″ one.

We went to Sunday lunch at my parents’ favorite Greek restaurant, Spartan‘s, and my low-carb option was a gyro platter with Greek-style beans instead of fries or mashed potatoes, and a side Greek salad, add an entire side of Kalamata olives. Delicious!

Sunday lunch with Mom

We said our goodbyes and headed back home, anxious about the trailer tires popping on the way home, but we made it home in one piece, and in pretty good time.

For some reason I didn’t have the deep sense of dread that I always feel before chemotherapy day, but the next day, Monday June 5, was the scheduled chemo day. I realize suddenly, that the reason I didn’t have a sense of dread is that I was pretty sure I wouldn’t have chemo that day, as I was being recruited for a study of a new chemotherapy drug. But the fallback position was FOLFIRI+BEV (Irinotecan, 5-Fluouroracil, and Bevacizumab), which incidentally did absolutely nothing while my cancer spread to my liver and grew and grew until surgery, a hepatic arterial infusion pump, chemo with Floxuridine, and radiation finally beat it down.

My Failed Attempt to Become a Human Guinea Pig

On May 31, I got a call from my oncologist saying I may qualify for a Phase 1 clinical trial using AbbVie’s Anti-c-Met Antibody Drug Conjugate, ABBV-400. To translate: my tumors have a mutation that expresses high levels of c-Met (mesenchymal-epithelial transition factor), and this mutation is associated with overall poor prognosis (AKA death), because the cancer has a high resistance to chemotherapy drugs. The drug being developed, ABBV-400, is a refactoring of a moderately successful trial drug ABBV-399, being tested against solid lung cancer tumors, but this drug targets c-Met expression and uses it to deliver chemotherapy to cancer cells, while sparing cells that don’t express c-Met. Some of the immune and epithelial cells in your body express c-Met and will likely suffer side effects, but the ability to deliver poison directly to my cancer cells would be a huge boost. The study is in the fourth stage where it is being tested against colorectal cancer tumors, and earlier stages with dozens of participants show some promise. And they also mean that I wouldn’t be the first human after mice to receive the drug (nice).

Another nice thing about the study is that it would pay for all costs of treatment, and a bunch of extra scans and blood work to see the levels of the drug in my blood 24 hours after receiving it, extra labs, extra CT scans and PET scans. Even if the drug didn’t work, I would be the beneficiary of a lot of information gathering that could be useful. Though I would have to endure regular biopsies of my tumor so that it could be genetically tested and evaluated, and I know from the days of my painful abscess that poking holes in my abdomen while I am conscious is not my favorite thing at all.

I spent a day researching the company, its drugs, their approaches, and reading about the study. Being in the study isn’t without its risks, like I could turn into a giant squid and slide into Jordan Lake and terrorize boaters for decades before I am hunted down and killed. Though I might enjoy that. Or it could be a Firestarter sort of situation and I start being able to make nuclear explosions when I am angry. That might also be interesting.

Or more simply and sadly, if the study drug isn’t working after 12 weeks and we decide to discontinue it, my cancer may have grown so much that I have even less time left to live, which means even less time to find a chemotherapy drug that works against my stubborn tumors. Making the right choice is so important right now, it makes my tummy rumble to even think about it.

So everything seemed to be lined up, though in order to enroll in the study, my platelet level of 91 would have to be over 100. My platelet levels have been on a steady climb ever since they were zorched by radiation in March and fell from 123 to 86. I had my fingers crossed.

On Monday the 5th of June I started my day with my lab work. The port nurse accessed my port, got good blood return, flushed it with saline, then drew out a couple syringes of blood (thus lowering my platelet levels even further). She put on a gel dressing to last a few days in case I went home with the 5FU chemo, and the hypo-allergenic version of the Tegaderm dressing over my port needle.

I’m not sure why they call it a port, since it’s on my starboard side.

I was released from the lab to head up to my oncologist appointment, and before 15 minutes had passed, the CBC (Complete Blood Count) results were in, and my platelets had fallen to 87.

And just like that, no study drug for me. Sigh. At least it wasn’t a treatment decision I had to make.

So we went to Panera Bread Company in the hospital, which should be renamed to Panera Stuff-You-Can’t-Eat Company because there really isn’t much on the menu that doesn’t have loads of carbs. So I had some tomato soup for lunch, and a couple hard-boiled eggs, and I contemplated my fate.

But then one of my co-workers, T. showed up because his mother was in the hospital having surgery, and I hadn’t seen him much in the past few years since the COVID and so seeing him really cheered me up and took my thoughts off-track. Thanks, T!

I had my oncology appointment after that, where I signed the consent forms to proceed with the FOLFIRI+BEV chemotherapy, and we talked about how nice it was to be off chemo for so long — well, except for the part where the cancer went bat-shit Tetsuo Shima insane on my peritoneum. I had them check out the red bump on my forearm that I was convinced is skin cancer (spoiler alert: it was probably a chigger bite, and now after the chemo it’s gone so… we will never know).

Then, after leaving the oncologist’s office, I got my CEA (Carcinoembryonic Antigen) results. The value was 8.7, down 12% from the previous value of 9.9. With no chemotherapy and only a restricted sugar and carb diet, with ketone levels of about 1.6, my value went down!!! Looking at the upward trend, the expected value after 13 days should have been about 12.9, but this result was at least 23% lower than I expected it to be.

My CEA Levels during cancer. Surgery #1 on 10/2021, Surgery #2 on 9/2022

This gives me hope that, going into the chemotherapy, the restricted glucose diet is helping slow down the cancer. Now I’m excited to know what the combination of diet and chemotherapy will do to the CEA when it is tested in 3 more weeks!

Chemotherapy #26

Doing chemotherapy and oncology appointments on Monday was much less crowded than it has been on Tuesdays. We didn’t have too long a wait in the waiting area, and were taken back to a regular infusion room with a reclining chair. Since we’re not accessing the HAI pump this time, there is no need for a bed which improved the wait time as well.

I got weighed, and I was 201 lbs (I lost 5 pounds in the sugar embargo).

I got my pre-meds, 12mg of dexamethasone and 16mg of zofran, a half hour wait, then a tiny syringe of atropine before the irinotecan infusion. The irinotecan takes a couple hours to infuse, then they switch to the bevacizumab, which takes about a half hour to infuse. Then they brought in the 5-Fluouroracil in a chemo football. Yay! We’re back to the football! I like this infusion pump much better. It is mechanical and has a 5ml/hr rate limiter, whereas the take-home electronic infusion pump is adjustable (but we only get 5ml/hr anyway). The electronic infusion pump is very heavy and onerous to drag around everywhere, and to sleep with at night, and it makes tiny zweep zweep noises as it pumps the 5FU.

My tummy was unsettled though not nauseated, and there were some cramps happening in my abdomen as is usual for the irinotecan. I forgot to bring my imodium so I expected instant diarrhea as usual, but it didn’t arrive. I did go to the bathroom halfway through the infusion, and it was reasonably normal.

We were discharged and I felt kind of hungry and surprisingly not nauseated so we went out to grab a bite to eat at the Carolina Ale House. I had a steak with Caesar salad (hold the croutons), and roasted vegetables. I was surprised I had a fairly robust appetite.

That night I took a melatonin to get sleepy, and I sat in my recliner since my stomach was getting a little queasy and I didn’t want to keep my wife awake in case I started hurling vomit all over the bedroom. I fell asleep at about 11pm, but my oldest son woke me up asking if I was doing okay. Grr, I was trying to fall asleep. I groggily went up to bed and slept until about 5am.

Unlike every single other chemotherapy session I can remember, I woke up without nausea. I didn’t need any zofran. I took imodium in case I needed it, but nothing seemed to indicate that I would. The only thing that was unusual was that on Tuesday at lunchtime I had a fatigue crash. It could have been not getting a full night’s sleep the night before, but I thought I would lay down instead of eating lunch and I slept deeply for 75 minutes.

Over the next few days of the “bad week” I didn’t get any mouth sores, dizzy spells, nausea, or insomnia. In fact I never took my 8mg of dexamethasone to relieve side effects, because I didn’t have any. I didn’t have blood sugar spikes, in fact my sugars were in the low 80s for four or five days. I did have the usual painful and caustic burning poops when the irinotecan went through me, sometime on Wednesday.

I’m beginning to think there is something to this notion that keto, fasting, and carb restriction can help reduce chemotherapy side effects.

I had a miraculous week. I joined my lunch bunch friends on Wednesday. I felt great. I had a lot of energy at night… I went to my APA pool league on Thursday. I lost my 9-ball match to another 4 (who is a 5 in 8 ball so… a better shot than me), but I won my 8-ball match against D, who is a 6!!! I was over the moon at sneaking in a win against a 6!

And then, this past Saturday, I pre-played an 8-ball match against C.S., a 7. His pool game is amazing. I did a lot of racking the first 2 games, I barely got a shot or two in before he cleaned the table and sunk the 8-ball. The third game was thrilling, I got on the 8-ball first and shot it and missed! He sunk his last ball, then expertly put down the 8 ball and won that game. The fourth game I was very lucky he made one mistake and I managed to sink my balls and then the 8-ball! The fifth game I also won, so I won a match against a 7!!!!! I almost pooped myself I was so excited… and nervous. So I won 2 out of the 2 games I needed to win the match, and he won 3 out of the 5 he needed to win. Final score: 2 points to zero points!

So at the time of this writing, I have a week before the next chemo infusion and it’s been a very tolerable cycle, for the first time… ever, I think. Right now I’m feeling hopeful and quite healthy, which is a special blessing. Thanks for reading all the way to the end of this book, if you made it here! And I was so scared!

My love to all!

Scanxiety

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It has been two fantastic months since my last radiation treatment. Lately I’ve been feeling better than I have in seven or more years. So much has happened in these couple of months. The biggest thing was that I traveled 30 or more hours there and back again, to upstate New York for my Mom’s 80th birthday celebration. I got to make the whole trip with my sister, and it has been so long since we have had a chance for long conversations together, with a bonus of singing and music sharing. She is such a perfect travel companion!

Black Raspberry Soft Serve at Main St Perc in Waddington NY

I had a happy time visiting relatives there who I love so much, and I tried my able best to eat an entire amazing strawberry rhubarb pie my aunt R. made for me!

OMG Amazing Strawberry Rhubarb Pie by Aunt R.

We also celebrated our 29th wedding anniversary in high style, going to a mediterranean restaurant we hadn’t visited in 20 years. The food was so good I had to wonder why we haven’t been back there in so long, the food was always the best!

New Zealand Lamb chops on Saffron Couscous and chick peas. This dish was unbelievably delicious.

I took road trips to visit some of my best friends in Richmond VA and Hope Mills NC, literally smelled the roses, walked many miles, ate in more fantastic restaurants, and enjoyed being 12 weeks off chemotherapy. I hoped I would be free of chemotherapy and cancer forever!

The cancer community uses the word scanxiety to describe the feeling of unease before a day of scanning, and it is perfect. I have been a bit anxious for the last few days. Today I was scheduled for my first CT scan since the radiation, to gauge the effectiveness of the treatment. The blood work showed my liver enzymes were comfortably in the desired range, but my CEA was 10, up from 5.1 on May 3rd. That value doubling in 3 weeks is not a good sign. When I met with my oncologist I could tell there was something bad in the CT results, because he had tears welling up in his eyes. The scan revealed two peritoneal tumors, one 1.7cm and the other 1.9cm, and several additional suspicious nodules, all appearing since the previous CT. This is pretty aggressive growth in the 12-week absence of chemotherapy.

This is one of the peritoneal tumors, circled in blue.

This is not an operable condition, there are just too many nodules. Our best hope is to use chemotherapy to slow or reverse the progression of disease. There are studies we might be able to enroll in, that use novel immunotherapy approaches, so that is one path to explore. Otherwise we do FOLFIRI + Bevacizumab chemotherapy and hope for the best. I asked the oncologist, with treatment how long I might expect to live and he answered, about two years is the median so some much less, some much more.

There was good news from the radiation oncologist. Even though this CT was done earlier than is usual after the radiation treatment, the liver tumor appears to be stable and the scar tissue left behind is shrinking as the liver heals better than expectations.

Another bright ray of sunshine is that Natera agreed to sequence my tumor and develop a blood test showing the amount of circulating tumor DNA in my blood samples. This can be used to determine whether a chemotherapy regimen is working to reduce more metastasis.

I’ve been reading a book about starving cancer and I’m wondering if I can help the chemotherapy work better by feeding the cancer ketones instead of sugar, fasting to activate autophagy, cutting all sugar out of my diet, and eating more cruciferous vegetables. Of course, peritoneal cancer comes with side effects of malnutrition, so it is something that would have to be realistic and monitored. And I learned the hard way in the last chemotherapy rounds, that an empty stomach was a nauseated stomach. So far today it has worked well, my blood sugar is 90, I made cast iron roasted chicken, a bit of stir-fried broccoli on the side, and drank lots of water to expel the iodine contrast medium.

And so I am sorry to say, it’s pretty grave news I have to share today. I’m doing pretty okay with the news though. After two heart attacks and now three kinds of cancer (colon, liver, and peritoneal), I’ve gone through all the emotions and stages I think I can go through already about my own mortality. I’ve developed a dark sense of humor about it that gets concerned looks from my family. Most of my worries right now are about the people I leave behind.

We all have a finite number of days ahead of us. My situation is no different, just with some fewer days. I resolve to enjoy it more, appreciate the little things, and live my life with gratefulness and joy for all the gifts I’ve been given.

Four Radiation Treatments

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My Chemotherapy regimen ended with the treatment on February 14. At that time I had a CT scan that showed my liver tumor had shrunk to 1cm. After a team of doctors met and discussed my case, the oncology doctors felt strongly that I had a better than 90% chance of destroying the tumor with Stereotactic Body Radiation Therapy (SBRT), and I consented to the plan. On February 28, we stopped the FOLFIRI chemotherapy treatments because the drugs Irinotecan and 5-Fluororacil will affect the course of radiation, making it more intense and possibly more toxic than necessary. My oncologist let me know that chemotherapy was over, as far as we can know. It was a relief to hear that we are done with it, as chemotherapy was rough, and though I always keep a positive attitude with my game face on, it was wearing me down.

Ready for the CT Scan to locate my tumor

My first appointment for radiation treatment was in a CT scanner, in order to precisely locate my tumor and put position markers on the outside of my body to assist in locating it for each treatment. I was positioned on the table on top of a sort of beanbag pad that two people, one on each side, worked into position at the sides of my body, and once in position they turned on a vacuum pump that extracted the air from the pad which made it fairly solid. I thought I might feel a little claustrophobic but once solidified, it was kind of comforting. I felt like I was on a papoose board, held lovingly in place and perfectly safe to be irradiated. I suppose it felt like a ThunderShirt for cancer patients.

Next they tried to attach a device over my abdomen that looked for all intents and purposes like an olive oil extraction system. A bar was attached to the table across my tummy and had at its center a threaded hole through which a bolt attached to a square pad could be cinched down onto my abdomen, to keep my diaphragm from moving up and down. Using my diaphragm to breathe would move my liver and thus the tumor, so this medieval sort of torture device could fix me in place and keep the radiation focused on the target. Thankfully the whole thing didn’t work because it put so much pressure on my hepatic artery infusion pump, pressing the skin of my belly hard against the metal pump implanted there. It was painful and after my complaints, we all agreed that the low-tech approach of me holding my breath for 20-30 seconds at a time would be a lot better.

So they coached me over a speaker when to breathe all my air out and hold my breath. It is pretty difficult to not feel like you are suffocating, and it’s a lot harder to hold your breath when you don’t have lungs full of air. Next, with half a beer bottle’s worth of iodine contrast injected into my port, they fired up a bunch of green lasers that made lines on my abdomen, then they located my tumor using the CT scanner and had me repeatedly hold my breath. Once the tumor was precisely located, the two technicians drew all over my abdomen with black and green markers, and stuck a bunch of hypoallergenic stickers over the marks to fix them in place for a couple weeks. These would be used with the SBRT machine to target the tumor. After that I was released so that the team could spend some time planning the dosage and number of treatments needed to irradiate the tumor and destroy its DNA, killing it utterly and leaving a ball of scar tissue in my liver for some years to come. And hopefully, for many years to come.

I was scheduled to return on March 21-24 for four straight days of radiation treatments at 8:15am each day. Waiting for these treatments to happen was a little anxiety-producing. As bad as chemotherapy can be, at least it makes you feel somewhat safe that the cancer isn’t spreading into your lungs and brain. When you don’t have chemotherapy it’s a bit like jumping out of an airplane with no parachute: you’re out there flapping in the breeze hoping your feeble efforts are slowing down the timetable of your inevitable impact with the ground. It is honestly a bit scary to be without it. What do I eat? If I don’t have any sugar or food at all, can I prevent the cancer from growing and spreading?

Luckily my digestion system solved some of those issues for me. Since my final chemotherapy treatment on February 14, my stomach has felt unsettled at best, nauseated most of the time, and painfully crampy at others. My oncology team tried a whole range of treatments and drugs to bring me some comfort, an oncology nutritionist interviewed me about diet and medications, and after some brainstorming I started a course of 1000mg of sucralfate in a 10ml suspension. It seemed to help a small amount, but nausea and cramping was getting worse and not better. We started a course of 10mg dicyclomine four times a day, and in less than a day the cramping was gone and much of the nausea too, except right after taking the dicyclomine, which made me quite nauseous for about 30-60 minutes every time I took the drug. But the next 3 hours were a relief.

We also wanted to check to make sure my clostridium difficile colonization from December 2021 was cleared, as well as an escheteria coli infection I had around the same time. We discussed also re-checking for the giardia infection I had at the same time, and also before the cancer, which was treated twice with a course of tinidazole and hopefully eliminated. So I had to provide a stool sample, which was pretty easy since I had a couple leftover sterile sample containers lying around. I mean, I say “easy” but you try unloading a half colon of your morning poop into a shot glass without making a mess of it. I didn’t have a “hat” collection device on hand so I had to improvise… enough said about that. <shudder>.

I went into the lab the next morning and had to wait to be called back to give my sample to the lab techs. In the meantime, on the first level there is often a piano player that comes in and plays show tunes and instrumental standards. It’s often sort of background music and in like 18 months of doing this, you would never know from the looks of all the cancer patients that anything moved them, EXCEPT this time he played “Easy” by the Commodores and a miraculous thing happened: many cancer patients of every conceivable age were tapping feet and mouthing the words, “easy like Sunday morning…” and it seemed like a peacefulness settled on the place. This was such a beautiful moment that I went ahead and added the song to my chemotherapy playlist, and this little tiny memory will be a treasure for me.

Easy by The Commodores was a crowd-pleaser

I got back my test results a couple days later, no c. diff, no e. coli. I haven’t seen test results for the giardia, but let’s hope all is well there. I continued taking the dicyclomine until March 18, when I was feeling so much better that the drug was making me nauseous even when I wasn’t having cramps anymore. My oncology team followed up with me regularly to make sure I was feeling okay.

Soon enough, March 21 arrived. It was 5 weeks since my last FOLFIRI and 3 weeks since my HAI pump’s Floxuridine infusions, and I was feeling pretty good. I arrived with my wife at 7:45am and went down to the basement floor, checked in, and before too long one of the technicians came and led me to the radiation suite. We stopped in a station full of monitors containing CT images of my chest and tumor, and I got to meet the team of four or so people administering the radiation therapy. I was led into a room with a fancy space-age radiation unit, where I had to take off my shirt and reveal my fancy black and green marks. The mold of my body was already down on the table, covered with a sheet, and I was helped into it so that I was lying down, and the technicians used the sheet to lift me and scoot me where I was more perfectly aligned with the marks on the body mold. Then the table moved so that the green laser lines aligned with the marks on my abdomen, and we got started. They put a little screen in front of my face that showed my breathing as a rising and falling white line. At the exhale point where my lungs would be almost completely empty, was a small green range where I had to hold my breath, such that the white line stayed in the green range. If, at any time, I had to breathe and the white line leaves the green range, the radiation shuts off. This was comforting as it meant I wouldn’t be responsible for zorching too much of my liver if I had to breathe.

I asked them to let me know a bit ahead of time when I needed to hold my breath. I was going to try an experiment in breath holding, to get easily past the 20 seconds or so that I needed. When I was a kid living in Japan, we went during the summers to Shimoda beach and I got to watch these female funado divers go down with a basket and harvest a special regional wakame seaweed, shellfish, oysters for pearls, all by holding their breath. They were down there an incredible long time, and they seemed to be breathing really fast at first before going under, then using weights to get down to the bed of the harbor. This swimming, diving, and breath-holding made an incredible impression on me as an 9-year-old kid, though I was talking to my Mom about it this weekend and she always thought what made an impression on me was that the divers were topless. For the rest of my life, whenever I was in a pool I focused on being able to hold my breath for long periods of time, trying to swim all the way across the pool underwater, and always counting how long I could hold my breath.

So I decided I was going to use everything I learned to hold my breath for as long as possible. I got into a meditative state and focused on breathing a bit faster than normal, visualizing my tissues being filled with oxygen, so that when the voice on the speaker said to hold my breath, I would exhale until in the green zone and hold my breath. It was very easy to reach a count of 20, 30, or 40 on the first day. They complimented me at the end on how well I could hold my breath, that their physicist hadn’t seen anything quite like it, and it made the radiation treatments go faster since we could cover the exposures in a shorter period of time.

The Big Space-Age Radiation Machine and the mold of my body

I took the first day of treatment off work because I didn’t know what to expect of my body after the treatment. I don’t know if it was my weird breathing, but I felt pretty dizzy after the treatment and was glad my wife drove me there and back. I had been entertaining a sort of fantasy that I could just drive myself there and back, and that I was some kind of radiation-absorbing Übermensch, but honestly I felt a little scared to do it all by myself. After the treatment I went home, drank lots of water, and was feeling very tired. I got into bed and slept at least 3 hours in what seemed like an instant. It was a very sound sleep, and I felt more refreshed afterward. I experienced a minor unsettled feeling in my stomach and wasn’t much interested in food. It was only when my wife forced me to eat cheese, cottage cheese, or crackers, that I ate much of anything that day. I got to feeling more hungry later in the day. I went to bed quite early and slept a lot. Other than being tired and having a little unsettled stomach, I didn’t experience any side effects at all.

Super fatigued after treatment, I took a long nap afterwards.

On the second day of treatment, my lunch bunch friend L. woke up at 5am to drive to my house and pick me up to take me to my treatment. I am so grateful for that, and am not sure how I can ever repay her effort since she did it for four straight days in a row while my wife was at work. I’m pretty sure I’m not that good a friend, to merit such a sacrifice but I am eternally grateful.

At the second radiation appointment with my friend L.

For this second treatment, things were pretty much the same but I had the hang of the breath-holding and was able to easily get to a count of 40. They complimented me again on how long I could hold my breath, and started asking how I was doing it. I was glad that I was a memorable patient, but I was even more glad that if I was being still for so long, hopefully the radiation treatments were more accurate and effective. I worked from home for some of that morning, but drove into the office and worked a full day with no ill effects except not being very hungry at all. I did need to take a 20-minute nap in my office though, because I was quite fatigued. I had some lentil soup at the Turkish restaurant with my lunch bunch friends, and it was well-received by my tummy. In general, I felt better on day two than on the first day, though working a full day left me very drained at the end of the day.

At work on the second day, the size of my Smart car in the parking lot suddenly struck me funny.

On the third day of treatment things were again very much the same, but I was getting breath-holds to counts of 40-50 or more, much more easily than before. After the treatment was done, they said I had set some kind of record for breath-holding. Mostly I was grateful that I could remain still for so long, to get the treatment over with faster and more accurately. After the treatment I went back to work and worked another full day, and I was eating better and getting my appetite back. I still confess that at 3pm I had to take a nap in my office for 20 or 30 minutes, and I hope I wasn’t snoring at all. 😛

Fourth and Last Radiation Treatment

The fourth and last day of treatment I was excited to get over with, and I didn’t sleep as well the night before because I kept envisioning what the end of my cancer journey might be like. My friend L. picked me up and drove me to the treatment, and this time I exceeded my previous breath holds by a great deal, able to go to the count of 65-70 several times. If I had been able to make it to a count of about 80, I could have done a cycle in one go, but I wasn’t quite able to get that far. Again the radiation oncology team was impressed with my breath-holding. At the end, I went outside and rang the bell while my friend L. coached me and captured video of the event. I was surprised that even with no one seemingly around, after ringing the bell a cheer and applause came from somewhere, like the entrance of the cancer center and from doctors and nurses passing by. Awww. I didn’t want to make a scene so I didn’t ring the bell in the radiation oncology area.

Which is weird, I didn’t want to disturb anyone still going through their treatments, but I remember being around while people rang the bell and it made me feel super happy and proud that someone had endured it all with grace and hopefully, great success.

Ringing the bell at the end of treatment

So where we are now is in surveillance mode. Over the next weeks and months I will be giving blood for CEA tests, and we will be looking for the levels to be going down and not up. There will be a follow-up CT scan in the next month or so, and then probably a PET scan in a few months if CEA scores aren’t moving in the right direction. With any luck, this will be the start of remission and I can look at this experience in the rear-view mirror, and live a lot of happy years!

On Friday, my last day of radiation treatment, I took the day off work hoping I would feel good enough to drive to the beach and meet my sister S., brother-in-law J.D., my Mom, my niece B., and her fiancé B. I didn’t quite have the energy after treatment to leap into a 3+ hour drive, so I took a long nap, did some leisurely packing, had a lunch of some of my Chicken Tikka Masala that I made a couple days earlier, then left for the beach. I took my time, stopping at rest areas and gas stations for a walk every hour to avoid pulmonary embolisms or other complications. I arrived at the beach house and hung out with my family. We played a card game called Phase 10 and my niece B. won, which got her picture posted on the Winner’s Circle board on the wall of my sister’s beach house.

We turned in for the night, my sister and brother-in-law sleeping in the master bedroom, my niece and fiancé sleeping in the double bed in the other bedroom, and my Mom and I slept on the L-shaped couch in the living room. In the morning, everyone woke up to me sleeping under a mountain of comforter on my back with my right leg crossed across my left knee, and my bare foot sticking out of the covers. No other part of me was visible. This struck them all as funny so the moment was immortalized in a page of my sister’s travel log.

My sister’s travel log. I am in the blankets at upper right with my mom pointing at me, with my foot sticking out.

We visited together at the beach all of Saturday, going to lunch for fried seafood, which didn’t bother my tummy at all, but I didn’t have large portions anyway. We played another card game in the late afternoon called Five Crowns, and I made it into the Winner’s Circle for the first time ever! Competition is pretty fierce with this crowd.

My Winner’s Circle picture.

After the game I left to return back home, I visited the beach to get my toes in the sand and dipped in the cold water, then I drove home.

The next day I packed our van with overnight supplies, went shopping for snacks and necessities, and after my wife got off work, we got underway on a drive to Asheville NC so that my youngest son J. could go on a college tour.

Stopping for dinner at Olde Hickory Station

On the way, we stopped in Hickory NC at the pub of one of my favorite breweries, Olde Hickory Brewery. This was difficult since I haven’t been drinking alcohol for the whole duration of my cancer diagnosis and treatment, which is now almost 18 months.

But Olde Hickory Brewery has a special seasonal beer called Event Horizon that is my favorite beer. It is truly stunning. It is described as an “Imperial Stout brewed with local honey, rich and robust with deep notes of dark chocolate and espresso and aged in bourbon barrels,” and is 12% alcohol by volume. Even though all the bottles are sold out by November, they had the beer on tap at the bar. I used all the charm I could muster to convince my wife to buy a flight glass of Event Horizon for $4.00 and give me a celebratory tongue-wetting. It was a couple of tongue-wettings actually, less than a teaspoon total of beer, but I cannot describe how amazingly, beautifully wonderful it was to taste my favorite beer at the end of nearly 18 months of cancer battle. I felt elated and surprisingly emotional at this moment. And my wife really liked the beer and drank the rest of it!

Wetting my tongue with my favorite beer, Event Horizon
Posing during dinner with my youngest son J. at Olde Hickory Station.

After visiting the gift shop and buying some pins, a hat, a cool T-shirt, and a 750ml bottle of Olde Rabbits Foot for much later, we jumped back in the car to head for Asheville. We stopped at the Lake James exit to get lost looking for a dark place to view the night sky and sadly, there might not be a place in our state where there isn’t an LED street lamp within 100 meters. The sky was pretty anyway. We got to Asheville, checked into a nice hotel, and got to sleep by midnight.

Which was good because we had to be at the university around 9:00am. We woke up around 7, showered, had some breakfast downstairs of weird meat sausage, eggs on carb muffins, more carbs, starch, strawberry-flavored carbs, sugar, carb juice, and carb-flavored jam. This is why I usually skip breakfast, it’s by far the most dangerous meal of the day if you don’t just have a couple of eggs.

The university tour went off without a hitch, it was a nice, small, insanely highly-rated liberal arts college, and it had a beautiful art building with a fantastic ceramics studio and several modern kilns including a raku kiln. Of course my son probably doesn’t share my love of pottery so his tastes could be different.

Yep, that’s me. This is also a shop in Asheville.

After the tour we went into Asheville proper, had lunch and went to a unique place called Madame Clutterbuckets Neurodiverse Universe:

We delighted in browsing this shop. It had antiques, magick stuff, card games, patterned socks, T-shirts, cat clocks, and all manner of interesting things.

There were many window-skellingtons here.

My wife bought me this amazing tea towel to commemorate the occasion of my irradiation:

We loved this little shop and we found a huge variety of enamel pins (something we like to collect in our household), so I got a Jewish Space Laser Corps pin and my son J. got a Skinwalker Ranch pin among others, and some stickers. I filled out a survey for a local university student’s research project. It was a good time.

I loved coming across this onesie in a store window.

Then we drove back home through pouring rain, lightning storms, and huge double rainbows. What a lovely end to a week of radiation treatments!!

Chemotherapy #25

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It’s Valentine’s Day and we start it by waking up early, showering, packing snacks and essentials into our chemo kits, and showing up at 8:00 a.m. for the lab work and port access.

Warm hearts in front of the cancer center fireplace

My favorite port nurse was busy with another patient so I saw a new port nurse who did a wonderful job of painlessly accessing the port. My port catheter, the one that goes over my collarbone and into my jugular vein, down into the top of my heart, was wonderfully patent, which here means it was clear of gunk and blood clots, making the task of drawing a couple of vials of blood for my blood tests easy work.

Next I went upstairs for a CT scan to check whether we have achieved tumor regression. It took until about 1:30 p.m. for the scans to be analyzed, so we couldn’t actually do our scheduled 10 a.m. oncologist appointment, or the 12 p.m. surgeon’s appointment until we had that information, so we had a very long 4-hour wait in the oncology waiting room while the CT got studied. My wife went down to the Panera bread place and got me a wonderful caprese sandwich. It hit the spot — I had skipped breakfast in case I needed to fast for a cholesterol test or something, and I was super hungry. I don’t generally know ahead of time what they’re going to test when my blood gets drawn.

Finally the CT results came, and the liver tumor that measured 1.3cm now measures 1.0 cm, about a 23% reduction in diameter, though by calculating the volume of a spherical tumor, that is a 45% reduction in volume. There are no observed new or increasing liver lesions. Also it never seeks to amuse me that this line always appears in my CT scan reports:

- Pelvic Organs: Unremarkable.

I don’t suppose this needs a lot of comment, but doesn’t that sting just a little?!

So I’ve got a lot of confusing pictures but hopefully adding arrows will make it easier:

It’s Valentine’s Day! Here’s an expensive picture of my heart. You can see my port catheter in white up by my clavicle. The white calcification is my next heart attack, stay tuned!

I am pleased that I got a great, encouraging visit with my cardiologist last cycle and since my metabolic syndrome markers are all down, hopefully we’ve stopped any atherosclerosis in its tracks. So that was a picture of my happy heart! In the CT scan, looking at the stent in my right coronary artery is kind of cool, it sparkles like a Twilight vampire! How cool is that?!

My stent sparkles!
Here is the remaining tumor on 12/13/2022
This is the tumor on 2/14/2023, hopefully it looks 23% smaller to you too!
This was the pie slice containing a big tumor that was removed from my liver during my September 2022 surgery.
This is the same pie slice now, all healing up

So after the CT scans were analyzed, I got to meet with my oncologist and then my liver surgeon. Everyone is happy the tumor is shrinking. Unfortunately if chemo makes the tumor disappear, any leftover cancer cells will go into hiding like Voldemort and slowly gain strength, only to come back in a year or two with a vengeance. So there will be a review of my case on Tuesday, where we decide what the next steps are. Surgery is risky because the tumor is so deep, and it would require removal of a large amount of liver tissue which has not-insignificant mortality risks. Ablation by sticking a probe in there and hitting it with 5 or so minutes of energy, can damage the bile duct and artery that are very close to the tumor and cause significant complications. The next best thing would be to start radiation which would kill the tumor cells and any innocent bystanders, or else possibly turn my liver into Godzilla. Either result sounds pretty cool, honestly.

In the meantime, we’re going to do three more chemo cycles first: a double whammy, then a single whammy, and another double whammy.

I am breathing a little easier right now, knowing we are making great progress. I am feeling so much less fatigued and have more stamina, and I am hopeful that we can safely stop chemo, load the hepatic artery infusion pump up with a big dose of glycerin or maybe vodka, and live free for a while. Big smile!

After the hopeful meetings with doctors, I went up to the infusion clinic and we had another good wait until about 3pm, when I got a bed. My nurse was Nurse H, who I’ve had once before and she is a ray of sunshine. She gave me the pre-meds (12mg dexamethasone + 8mg Zofran), then used the big huber needle to access my HAI pump fairly painlessly and confidently, though not quite as expertly as Nurse O. I was definitely pleased with the performance though. I’ve had several people in training do it and it was less pleasant, but never too bad.

Nurse H is super helpful and cheerful, and it was a pleasure to spend a couple hours infusing irinotecan after getting my atropine. The atropine makes you feel a little funny, your heart makes a little hidey sort of feeling, then your forehead gets a little dizzy, along with your eyes. But with the atropine on board, the irinotecan doesn’t give you abdominal cramps and pain, so a little dizziness is just peachy.

The irinotecan infusion went really well, I didn’t feel ANY nausea or ill effects except a full bladder. I got plugged into my 46-hour 5-fluouroracil IV pump and we were set free around 7 p.m., much later than usual. An 11-hour day!!

In a VERY RARE event, I was feeling just fine and hungry for dinner, so we had an impromptu dinner at Freddy’s Frozen Custard and Steakburgers, since it was open and I never got to have my Monday strawberry milkshake. Pretty much ever since chemo started, I have treated myself to a strawberry milkshake on the day before, just to keep my spirits high and my stomach happy. Freddy’s is somehow my favorite, the flavor of the custard is better to me than the soft serve ice cream in most joints. Even better is a milkshake made with Hershey’s ice cream and strawberries… wow. Even better with heath bar crumbles. So this is what I ordered, a strawberry milkshake with heath bar, some tiny shoestring fries and a patty melt, which my tummy wasn’t as excited about but seemed to work.

I immediately went to bed after I got home, somehow thinking I could fool the steroids into letting me get a full night’s sleep. I also took 5mg of melatonin. No such luck though, the kids were having super loud 90dB conversations outside my door, so I cranked up some storm sounds on YouTube on my TV, and that helped. But I stared at the ceiling until about 1am, which is two hours earlier than normal.

Wednesday night I’m going to try a little new trick. My sister gave me an amazing purple flannel quilt and it’s sort of magical at causing me to sleep in warm happy bliss. I think of Like Water For Chocolate, where Tita’s emotions are transmitted to the food she makes. This book is a great read, and if you only have a couple hours, you can watch the amazing film. Do it! I feel like my sister must have been super tired when she made this quilt, and the energy woven into the quilt takes about one minute to drop me into deep sleep in my recliner. I’ve got to bring it up to my bed tonight and try it there! In the meantime at 8 p.m. I took my usual evening drugs plus 4mg of the steroid dexamethasone, which lessens side effects from the chemo but also can keep me awake and definitely it raises my blood sugars.

I never got to try my sister’s quilt experiment because after midnight as I was headed to bed, my youngest son approached me needing help with the math on a chemistry project. I tried to understand the problem for about an hour but my brain was exhausted, I absolutely couldn’t keep a focus on anything, and kept falling asleep into micro-naps. We both decided to go to bed and wake up early. So I fell asleep, exhausted, more or less immediately and woke up at 7am with an unsettled stomach. We finished the math and my son packed up and went to school. I had to shower and go to work, still pretty tired with about 5 hours of rest.

Thursday I woke up, worked the full day, then went to pool league. We earned this cool patch for winning 5 out of 5 matches of 9-ball and shutting out the opposing team.

Sweet victory!

I was late getting to bed Thursday night, but I was quite exhausted so I feel asleep pretty easily and got 7 hours of sleep. What bliss! I woke up Friday much better rested, with my brain working properly at last, at least until 5pm when I started getting really tired. Over the next 12 hours as the steroids wore off, I slept probably 10 of those hours. Also once the steroids were gone, I had to tolerate a near-constant tummyache for days and days. And my mouth sores arrived full-bore and have made it hard to eat, chew, or swallow. By Saturday I had lost 6 pounds and weighed 197 lbs.

Saturday I got to sleep in! How amazing! We got a new elliptical and it was delivered on Thursday, so the kids were bugging me to “help” assemble it. My oldest was a lot of help actually, and it took us about 3 hours to put it all together. The instructions consisted almost entirely of exploded parts diagrams, so it was quite difficult to follow, but we managed it. The box it came in was of particular interest to the cats, but when one of the kids and I claimed the territory by getting into the box, the cats ran away scared.

If it fits, I sits!!!

As far as the chemo side effects go, the entire “bad” week has been much worse than any of the last 6 or so rounds. My stomach is nearly always unsettled. Even Tuesday, the first day of the “good” week hasn’t been so good. I discovered cottage cheese for some reason calms my tummy. Until this cancer battle, I don’t think I ever had more than a couple containers of cottage cheese in my life, but now I go through several in a month.

On Tuesday, the start of the “good week,” the oncologists, interventional radiologists, and surgeons had a meeting and one of the cases they discussed was mine. They recommended dropping two of my three scheduled chemotherapy rounds and using radiation treatments to go after what remains of the tumor. They felt that now that the tumor is small enough, there is about a 95% chance they can eliminate it with radiation. There will be side effects like nausea, vomiting, diarrhea, skin burns, et cetera, and recovery from the radiation treatments can take several weeks. There is also a risk of radiation induced liver disease, which is… not a good thing.

I have an appointment at my next chemotherapy day with the interventional radiologist to hear the plan, its risks, costs, and side effects. I will update the blog with the results of that consult and the plan going forward.

I have to admit that I am excited that chemotherapy #26 might be the last round. Three rounds of radiation means that perhaps in less than a month I might be recovering, and hopefully looking at this cancer in the rearview mirror. At the same time, the chemotherapy has seemed to keep the cancer from metastasizing further, and stopping it feels a bit like wandering out of the green safety zone. But I can tell you, I will not miss chemotherapy.

I feel like this has been the worst round of chemo. I had abdominal discomfort and an upset tummy for 10 solid days, and intermittently even up to the day before round #26. Mouth sores persist, even the day before the next round. In most ways, I never had a “good week” except that my sleeping was much better.

On Friday morning at around 4:00am, according to my middle child’s recollection, there was a great deep thud and crash, and little did our sleeping family know but that a tree at the corner of our yard fell across the road and took out the power lines on the other side. I woke up around 5:00am to the police shining lights all over, and then the power company arriving and sitting quietly in their bucket truck contemplating the destruction. I had to take a half day off work that morning because when the power company’s tree crew came, they blocked off my stree and were very keen to know who the tree belonged to. I was waiting for people to show up in my yard with torches and pitchforks, since everyone’s power and internet was out now.

Rest in peace, you old dead tree

I was pretty sure that the tree wasn’t actually mine. It is actually three very large trunks merged into one at the base, and one of those trunks leans dangerously over all the cars in my driveway, and will very likely remove the corner of my garage if it comes down, which is all but certain now. About 6 years ago the tree had clearly died and I approached the neighbor about it, even offered to go in halves on the cost of removing it. The neighbor wanted to have a survey crew look at it to determine whether it was his tree or mine. Then, a few weeks later there was a FOR SALE sign on his property and it sold instantly, and there was a new owner moving in very shortly after. I meant to discuss the tree with the new owners, but I didn’t want them to be looking down the barrel at a several-thousand-dollar tree removal expense while still in their homeowner honeymoon period. I never got around to talking to them, since a year or two later they renovated the house and sold it to my current neighbor, S.

I checked my survey and though the edge of the tree encroaches on my property line one foot away from my split-rail fence, the centers of all three trees are solidly on my neighbor’s property. So the power company cut the tree up and got it out of the road. It’s nice wood, ash I think, and I’m thinking since they put all the wood on the street side of my property, if no one wants it I might want to get it milled down into little boards for woodworking.

Then on Sunday, day 13, the filling in my tooth all the way in the back on the top, disintegrated and made my food all crunchy, I had to spit it out. I didn’t experience any pain but I could notice with my tongue that there was a huge hole down the center of the tooth. I switched to soft foods and prayed my dentist could fix the tooth before my next chemotherapy round, as they do not like you having dental work during the chemo, as it can introduce bacteria into the bloodstream that your immune system isn’t able to fight. On Monday I called the dentist’s office and politely pleaded with them to fit me in that same day before chemo, and they had me come in at 9:00 a.m. and wait until there was a free space in my dentist’s calendar. I got put in a dentist’s chair and given X-rays, and when my dentist got free for a bit around 9:30 a.m., he numbed up my tooth, ground out the remnants of the old filling (which was placed back in 2008), and put in a new filling, all in less than 20 minutes and I was released gratefully into the wild. Thank heavens! And many thanks to my dentist as well!

I was super happy to hear this week that our old family friend (old for a long time, not necessarily the ancient kind of old), Mr. P is coming home from the hospital after surgery to remove cancer from several abdominal organs. Mr. P. is a huge inspiration to me, his ability to remain cheerful and make jokes about his years of cancer treatment and chemotherapy always cheer me up when I call him to chat and commiserate. I don’t think I would have as positive and cheerful an attitude about this whole cancer mess without his example to guide me. He is one of the dearest people to me in the world, and is like another father to me. My prayers are with him every day, as well as with my friends P. and T. and L., who are recovering from their own cancer battles. And of course my prayers go out to all people affected by cancer, and all who suffer with health problems, may all of us see lasting health and be free from pain.

That’s pretty much all I have to report for this cycle and besides, my cat Boots has fallen asleep on my mouse and I have no way to click around and edit things anymore. So anything I write from here on out would just be stream-of-consciousness ramblings. Or wait… I think it’s all stream-of-consciousness ramblings anyway. Oh whatever. Be well everyone, and take good care of yourselves!

Chemotherapy #24

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My last chemotherapy round was the easiest ever, and for that reason I felt very grateful and rested, like I had been on vacation somewhere. I arrived at my lab appointment at 7:00 a.m. and my favorite port nurse T. accessed the port expertly. For the first time though, my port was being a bit cranky and was difficult to get blood return, so a bit more flush did the trick and she drew several vials of deep red blood. My lab tests drawn this time were a CBC, CMP, CEA, and LDH.

The results were quite promising! In my Complete Blood Count, the platelets were 116, up from 98 but still less than the 150 desired. My Red blood cell counts were up to 4.13 from 4.09, should be about 4.37. For my Comprehensive Metabolic Panel, my liver enzymes were back in the green, AST=37 and ALT=56.

Best of all, my Carcinoembryonic Antigen (CEA) was 4.7!!! Down from 8.8 last month. A CEA of 2.5 is the high side of normal, and my highest value was 70 before liver surgery. The CEA numbers are very important because low CEA levels put your oncologist in a good mood. There are reasons CEA can be elevated other than cancer like smoking or exposure to deadly chemicals, so it isn’t the most specific test in the world, but we’re fairly certain these relate to my tumor and the new number is comforting.

My Lactate Dehydrogenase was down to 130 from 150. Cancer cells are devolved primitive cells due to mutations so they are forced to get energy from fermenting 21 times more sugar than normal cells. The LDH test measures a byproduct of that fermentation and skyrocketing values aren’t very good, people don’t tend to survive with high readings. So this lowered number is also good news.

I lost 2 pounds and am now at 202 lbs, so my weight is stable.

Infusing Chemo #24

We met with the oncologist and I told her the story of the last cycle, then we looked at the lab results and decided to proceed with the chemotherapy. We got to the infusion clinic earlier than ever and it was only a half hour before I was shown to a bed. A half hour is about the fastest it can be since it takes the pharmacy about that long to custom mix your particular cocktail of chemo drugs.

Maybe it is a bit of both!

I got my pre-meds and met trainee nurse A, who came to us from Boston and is very experienced in nursing, but new to the chemo business. I swallowed the 12mg dexamethasone and 8mg zofran, and after a half hour wait to let them settle in, I got a dose of atropine to counter the irinotecan’s crampy abdomen effects and we started the irinotecan infusion.

Nurse O is probably my favorite chemo nurse. She is so knowledgeable and experienced, explains everything happening really well, fills in gaps in my knowledge, and does a fantastic job training the other nurses. Best of all, she can stick a huber needle into the dead perfect spot in the reservoir of my hepatic artery infusion pump in one swift, nearly painless maneuver. I was complimenting her on this when I realized I may have jinxed the whole thing… but she repeated her previous expert performances without a stitch of worry.

Nurse O flushed and then filled the HAI pump with the floxiridine for two weeks of constant infusion. The irinotecan infusion finished, we attached the 5-flurororacil to my port line from a take-home portable IV pump, and we were free to leave! I think it was a new record for speed, the whole process starting with the lab work, was over from start-to-finish in about 5 hours.

Normally after the irinotecan infusion is done, my stomach is more upset than it was at this time, so I wanted to risk getting some lunch in me, as it was before 1 p.m.. We walked about quarter mile to a cafe that served African dishes. I’d heard good things about it, but had never gotten a chance to go there. It did not disappoint, though the eggplant dish I ordered was a bit spicy and I worried about having another bend-over suffering digestion event, so I finished only half the dish and traded with my wife for her salmon dish. She was very nice to offer this, but then I learned she doesn’t really like eggplant, so then I felt bad. I LOVE eggplant in so many different ways, how after 35 years together I missed that she didn’t like eggplant?

Afterwards, we walked back towards the parking garage but we had to ascend hundreds of steps to do so and my wife’s knees are not in good shape so it was very slow and painful going. We stopped to have a rest halfway up.

Taking a rest from stair-climbing

For dinner, at my oldest son’s request, I taught him how to make homemade tomato soup by roasting tomato halves and garlic under the broiler, sweating onions and celery in butter, adding the tomatoes and cooking for about 20 minutes, putting in some homemade chicken bone broth since I was out of vegetable stock, and a bit of basil, then blending the soup until just broken up because I don’t like it too smooth. Then he wanted it to be creamy so I taught him how to make a roux and turn the dish into a tomato bisque. In exchange, he made me a killer grilled cheese sandwich and we had that for dinner. It hit the spot, and my tummy was very happy.

I had a terrible time getting to sleep that night due to the steroids. I had 5mg melatonin around 9pm and still wasn’t able to drop off to sleep until about 2am. I woke up at 7am with an upset stomach but not full-on nausea. Some milk and crackers seemed to help.

I had to rush to my yearly cardiologist appointment, and she spent a good long time going over the events of the past year. With the weight loss and exercise (6000 steps a day now), my systolic blood pressures are in the 100s-110s, so she dropped my blood pressure medicine, Losartan, by half also to give my kidneys a break. She also said research is favoring a figure of 7500 steps a day, so I need to increase my walking. She was happy that my metabolic syndrome markers are way down, and was thrilled with my last lipid panel: Total 117, LDL 45, HDL 50, and Triglyceride 111. My Triglyceride to HDL ratio was down to 2.34. So here is my little lecture on the significance of this ratio to your health:

Your Triglyceride to HDL Ratio. This ratio is an indicator of your insulin resistance, and this value should ideally be as close to 1 as possible, but good scores are usually less than 2. A score greater than 3 is not good. I think my score here was a 9 when I had my heart attack in 2007. If your score is that high, this gets called diabetic atherogenic dyslipidemia, and it accelerates atherosclerosis, making heart attacks and strokes much more likely. There is actually a push to use this ratio to diagnose diabetes, because it shows up a decade before your blood glucose goes wonky, and usually by the time your diabetes is diagnosed using blood glucose levels, your heart has already incurred way too much damage. There is a lot of evidence that insulin, and not cholesterol, is the cause of damage to the cells that line the walls of your arteries. The cholesterol that accumulates there is like the fire truck in front of a burning house, it is trying to put the fire out but in this case, since fire trucks are always in front of houses on fire, they get blamed for starting the fire. What you can do to help avoid this is (in order of importance):

  1. Keep refined carbohydrates low, and avoid as much sugar as possible. Sugar will kill you much faster than any kind of fat, except for trans fat and expired oils.
  2. No snacking between meals — mom was right when she said you will ruin your dinner, and now we know it will ruin your heart too. Your insulin levels need to go down and stay down for some time before your next meal.
  3. Give yourself a good fasting before eating the next day. Don’t eat for a couple hours before bedtime, sleep 8 hours (also important), and when you break your fast your insulin levels should be down again.
  4. Avoid vegetable oils (that is a misnomer — there are no actual vegetables in vegetable oil) and seed oils. You are actually better off with coconut oil, palm oil, ghee (clarified butter), butter, beef tallow, lard, or chicken schmaltz. Seriously! Check the dates on your oils and throw them away if expired, or if there is no expiration date on your oils. Olive oil is amazing for its polyphenols, but only if it’s not heated to its smoke point which oxidizes the oil and makes it harmful. And only buy olive oil that is single-sourced from one country and has the production date and expiration date listed on the label. Avocado oil may be okay as well if you don’t want to trust the oils the good Lord gave you, and it is good for cooking due to its high smoke point.

End of lecture!

So I went into the office on Wednesday and had lunch bunch with my friends. I had the meze platter with eggplant salad, ezme, baba ganoush, tabouli, and stuffed grape leaves, and fresh Turkish bread. It absolutely hit the spot but I didn’t touch the ezme, it was too spicy. I had also an order of cigar bourek that was good but maybe not entirely beloved by my tummy at the time. The food and company were perfect.

At 3pm I had an appointment to get 4 new tires on my 2015 Smart ForTwo Electric Drive, and the shop was backed up so it took until 6pm. While waiting I went to the shops across the street and walked more than 7000 steps, and picked up some groceries and chicken wings for dinner.

My fleet of Smart cars… 2013 Brabus Edition, 2013 Electric Drive, amd 2015 Electric Drive

When I got home the older two kids divided up the prep duties: my oldest made my special recipe buffalo sauce and he got the emulsion with the butter just absolutely perfect. I made the beer batter and dredge with 16 herbs and spices, and my middle kid cut the wings into flats and drumsticks, and reserved the wings in a container for making chicken stock later. I’m not in a position to handle the spice of buffalo wing sauce due to the chemotherapy destroying my intestines, but I did try a couple of wings as simple fried chicken, and they were perfectly crispy and tasty. Since the liver surgery (and gallbladder removal), I can’t tolerate a large volume of fried food though, so I made a salad with tomatoes and cucumbers, red onions, feta, olives, and high quality olive oil, with a splash of balsamic vinegar. I would normally have more vinegar but it really upsets my stomach on chemo week.

And upset my stomach it did! I had a deep bout of nausea and took a Zofran, then had a dish of ice cream because it always seems to settle my stomach… or soothe my brain. After about 30 minutes I was feeling pretty okay.

Thursday was takedown day, and Nurse J. from the home nursing service came after the 5FU infusion was finished, flushed the line, and put in heparin to hold the fort until next time the port gets accessed. It was a sort of bittersweet experience because Nurse J. is taking a job with less travel and this was his last visit. I’ll miss his friendly nature and his deep concern for his cancer patients. After takedown I took a shower, which I can’t do while the port is accessed, and feeling all nice and clean, I made it in to work by noon! I had lunch in the cafeteria, a caesar salad with no croutons, and the addition of olives. And two deviled eggs, which I have never seen on offer in the cafeteria before. I love deviled eggs! And these were no disappointment.

On Thursday night I went to pool league and won a 9-ball match against Perry (a 5) for the first time in my life, and we were competing for one last ball so it was a close and exciting contest. I’ve never even been that close to winning against Perry. Then I won an 8-ball match 3-0 against another 4 and she is honestly a much better shooter than I am, but I played very defensively, which I think offended her. (So sorry!) That night, as a team we did a clean sweep in 9-ball, meaning we won all 5 matches for a 73-27 score. We also won the 8-ball match, but not all the games. This puts us in second place for 9-ball, and our eyes are on the next city tournament if we can take the lead!

Friday was a good day! I started the day with a nice conference call with my Mom and sister, which is a wonderful start to a day! Then I went into the office, had a salad for lunch with still more deviled eggs, and worked until I got a craving for enchiladas. At the end of the day I group-texted the family and asked if anyone wanted to go to El Rodeo, one of our favorite Mexican restaurants, and everyone was enthusiastic about going. At this restaurant, their enchilada sauce is not hardly spicy at all, so I hoped I would tolerate it well, and I did — 2 bean and 2 cheese enchiladas supreme. I wasn’t feeling the beef or chicken. No problems with digestion! Happy Day!!!

After dinner, feeling full and having started my steroid crash after the dexamethasone wears off, I went to bed at 9:30pm and slept for about 6 hours. Not feeling too tired, I updated this blog and then went back to bed.

The weekend went by in a blur. Saturday we watched Everything, Everywhere All At Once which was amazing and pure chaos, and the movie was interrupted often by some chaos in our household too. We watched the movie in the afternoon so that my wife wouldn’t fall asleep in the middle (she wakes up at 4am for work and after about 8pm she falls asleep pretty much wherever she is sitting or standing). The film really is deserving of all the awards!

I think the good week started early on Sunday morning, as I felt pretty good and had minimal side effects/symptoms. Typical for this time in the cycle, I have started to develop mouth sores since the chemotherapy attacks quickly dividing cells like the lining of your mouth and the lining of your intestines, and things like your hair follicles too. As I get more cycles of irinotecan, I seem to be developing a cold sensitivity in my back teeth that usually goes away by day #9. It makes it hard to have cold iced tea or ice cream, it takes several minutes of discomfort before you’re accustomed to cold things. But in the big scheme of things, this is very minor and I’m thankful to be complaining about something so minor.

Monday I went into the office for work, had delicious tacos al pastor with grilled pineapple for lunch with friends, and that evening I made [Japanese] yakisoba (fried noodles) for dinner. I learned a new trick from last week’s pad thai experiments. With pad thai, you simmer the pad thai sauce until it thickens, set it aside, then add to the noodles later so they don’t get overcooked and gummy. I was inspired by that and did the same when making the yakisoba sauce, mixing sake, japanese worcestershire sauce, and Bulldog tonkatsu sauce and simmering them until thickened. Then after stir-frying the meat, adding the vegetables, then the bean sprouts and cabbage, I added the noodles and the thickened sauce, stirred until mixed, and sent it to the plate. The advantage of this was that the vegetables were not too overcooked and the noodles were more toothsome, which never happens when you have to simmer off the sauce while all the ingredients are stewing in it. What a great lesson learned! Though my oldest child said this time he thought the sauce was too intense and I realized the packet of fresh yakisoba noodles I used was 12oz instead of 16oz, so I should have compensated by making less sauce. I actually liked the flavor a lot, though it burned my mouth sores. I had to go update my recipe with what I learned, so I remember to do it again next time! I love when you get a new outlook on one recipe from the techniques of a different recipe.

Tuesday morning I went into work and had lunch in the cafeteria downstairs, with seven of my coworkers, one of whom was visiting after retiring at the beginning of the year. It was so wonderful to see him again, and also wonderful to have lunch with the team which has been rare in the COVID and post-COVID days. Now that people are returning to the office, I hope for more opportunities to see everyone!

On Wednesday I got to see the Lunch Bunch for Turkish food. My favorite Turkish restaurant was collecting money and items for earthquake victims and the local news showed up to interview the owners and employees. Sleeping bags, clothes, shoes, boots, blankets, and much else were being packed into boxes and they were to be taken to the Turkish embassy in Washington, DC. When the news story aired, I was in the background eating lunch and was momentarily shown in the broadcast. A scene shot of the front of the restaurant also included my little black Smart Brabus. But it’s a somber news story; Turkey is going to have such a long road back to normal, it is horribly sad. One great way to help is to donate to the Bridge to Turkiye Fund.

I took Friday off work and went to visit my parents for a couple of days. In the days before the cancer treatments, I tried to visit them once a month, but I am very lucky now if I can see them every few months. I planned to leave around 8 in the morning but didn’t get on the road until after 9, and I stopped a few times to walk around and prevent pulmonary embolisms by taking ten-minute walks around rest stops. I arrived around 2 p.m. and was quite tired by the trip, so I took a nap for an hour or so, then visited with my parents for a while. Then I got to have dinner with my friend J from high school, and I enjoy every opportunity to spend time with him since our friendship magically picks up like not a moment had passed in between. A recurring theme in my life lessons with cancer is that special friendships are golden treasures, and you should spend as much of your life nurturing and appreciating your good relationships as you possibly can.

When I got home around 8:30 p.m., my father went to bed since he turns in pretty early, and I got to spend some nice time chatting with my mom on the couch until about 10:30. My sister and father always have breakfast together at a place called Anita’s, that has breakfast burritos with egg, potato, and a variety of ingredients and proteins depending on which one you choose. There is a whole take-out business dedicated to people ordering and picking up a bunch of these breakfast burritos for their home or office, or just for themselves. They meet there and have quality father-daughter time every week, and my sister wanted me and my mom to join this time for a nice family breakfast.

I got to sleep in my old bedroom and I woke up the next morning in a sort of time warp back to 1985 or so, hearing my parents talking and saying, “but it’s 7:30, he should be up! Is he awake?” I can’t tell you how many Saturday mornings went like this growing up, since I liked to stay up late in the morning on Friday nights and watch Star Trek or Doctor Who, or read or write in my bedroom until the wee hours of the morning. I would always sleep in, while my family woke up at 5 a.m. and made huge lists of chores and things to accomplish for the day, and they would divy up all the tasks and all of their work would be finished by about 9 a.m.. Then they would congregate outside my door and make noise and scuff about, somewhat irritated that I was still asleep. If I slept past 11 somehow, the dog’s slimy tennis ball would end up being thrown in my bed repeatedly, shortly followed by being jumped on by the dog, until I got out of bed and was good and awake. My nickname in these moments was Lazy-Bone Jones.

So hearing my parents walking around the house talking, I got up and they must have texted my sister that I was awake because she showed up shortly afterwards, and not even having showered yet, we jumped in her car and went to Anita’s for breakfast. And the breakfast didn’t disappoint — so muy delicioso. The place had maybe 20 percent of its tables occupied, and my family were commenting about how busy the place was this late in the morning. I asked when they normally came, and I think they assumed that I knew, but the answer was they always get there at 7:00 sharp. So I seriously threw them off their groove by sleeping in. It’s nice how almost 40 years later, our Saturday family dynamic isn’t all that different, LOL.

I got some quality time over the weekend with my parents, helped teach my Dad the ins and outs of the Plex Media Server so that he could access and play videos from an external drive on their TV, and showed my mother how to search plex.tv for movies and shows, since it shows very accurately which streaming apps and services can stream that movie for free or for rental or purchase. I’ve used Plex for years on my home NAS and totally love it.

I also had a really cool conversation with my Dad about Tyre Nichols and the Memphis police, and how in policing, politics, and in our relationships, our society is losing the ability to treat others like humans, with respect. The dehumanization of the last few years makes it too easy for us to demonize and murder people from other parties, races, countries, or walks of life. We need to train ourselves better how to be better human beings. This discussion provoked some rare discussion from my father about his time in the military, which is always amazing and fascinating because I do love hearing about and learning what makes my Dad tick.

And before I new it, way too soon, it was time to go home, and once there I began the preparations for the next round of chemotherapy. I like to prepare some food to stock the fridge with easily reheatable meals that don’t upset my stomach during chemo’s bad week.

This time I made homemade cole slaw and my gramma O’s cabbage rolls recipe. This was the first time I ever made cabbage rolls and they turned out okay, though the recipe calls for uncooked rice and it was a bit too al dente even after 50 minutes of baking, probably I did not have enough water in the filling. But on reheat they were wonderful! Not a bad first try. Now it’s time for the next cycle! On Valentine’s day I will have a CT scan to check the progress of the chemotherapy on my tumor, and I have my fingers crossed for the best!

My first cabbage rolls!!

I appreciate everyone who has gotten this far through the blog post. Thank you! Love to you all!

Chemotherapy #23

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Chemo #23 in the infusion clinic

I am now able to play little tricks on my brain, like making it forget that I have chemotherapy tomorrow so that I don’t feel psychosomatically sick to my stomach when I think about it.  For this round, a bit of blissful ignorance helped me because I woke up Tuesday morning feeling pretty darned good.  I knew that on this day, my appointments started at 11:45am so it would be late and dark when I got out.

I had a nice hot shower to start the day, attended some morning meetings by video conference, then we got in the car and headed to the cancer center.  We got there exactly at 11:45am, and I checked in at the lab then got my port accessed by my favorite port nurse again.  I am eternally grateful for the port, and it makes me happy that it saves me from so many painful IV sticks and blood draws.  The nurse drew blood for a CBC (complete blood count), a CMP (comprehensive metabolic panel), and a LDH (lactate dehydrogenase).

When the results came back, my platelets were down again to 98 [E9] (should be 150-450), Red Blood Cell count at 4.09 [E12] (should be 4.37-5.74), AST 49 (should be 15-41), ALT 74 (should be 17-63), and my LDH was 170 (well in range 100-200).  The AST and ALT show a bit of stress on my liver from the double-whammy chemo, but my hepatic artery infusion pump gets filled with saline this time so my liver will have a bit of a break. The LDH (lactate dehydrogenase) is not elevated at this time, my understanding is that this is a by-product of cancer cells being primitive and using fermentation to get energy out of the sugar they consume.  In short, there seems to be a correlation between high LDH levels and early mortality, so the LDH gets tested every so often, and we really like the LDH to be in the good range.

So, at 12:45 we met with the oncologist and discussed the last cycle’s side effects.  I complained mostly about mouth sores, some poopy discomfort, and nausea.  I managed to gain a couple of pounds and am now at 204!  We decided the lab numbers were good enough to go ahead with the chemotherapy infusions, so I went up to the infusion clinic next, checked in at 1:15pm, and my wife went down to the Panera bread shop and got me a lunch of tomato soup, which was the only thing that appealed to me on the menu at that time.  We had a pretty long wait until about 3pm for an infusion room to open up, and finally my pager went off and I got to relax in a hospital bed.  I got 12mg of dexamethasone steroids and a couple of Zofran, and about half an hour later got some atropine to make the irinotecan infusion go easier.

This time, the irinotecan didn’t cause as much tummy-roiling or little spasms in my belly, and I didn’t have to run to the toilet halfway through because I cleverly took a prophylactic imodium in the morning.  When the irinotecan was finished, nurse O talked another nurse through her first HAIP (hepatic artery infusion pump) access via the needle.  It’s always a little harder when someone inexperienced accesses the HAIP because they have to move the needle around to get properly into the pump reservoir, which involves a bit of pressure and wiggling in my skin.  But after a minute or so the nurse being trained was able to get the needle in place, and my floxuridine chemo solution started flowing up into the syringe.  The amount extracted was measured and compared to the amount put in, and a flow rate was calculated.  This rate has to be carefully observed, as if it is too high, my liver could get too much floxuridine and experience some liver toxicity.  Next the HAIP was partially filled with saline to flush it, then filled with a large enough amount of saline to last the next few weeks.

Next I was hooked up to the home IV pump, the 5-fluororacil was connected to my port, and we were sent home.  It was after 6pm and quite dark outside.

Around 9pm I took 5mg of melatonin to help me sleep, as the dexamethasone keeps me awake even though I am exhausted from the chemo infusion day.  I ended up staring at the ceiling until after 3 a.m., listening to ocean waves on my phone with headphones, and clearing my thoughts.  Nothing really helped but finally I fell asleep.

Usually I wake up around 5am with a wave of nausea, but this time I didn’t stir until about 8am, when my wife sends me texts to remind me it’s time to take my medicines.  I had no nausea at all — not even an upset stomach.  Just in case, I had some Carr’s table water crackers with cheese, as having a little something on my stomach generally helps with nausea.  I was still quite tired, but took a shower and drove the 25 minutes into work feeling pretty good.

I had an appointment with my endocrinologist, Dr. B.  He downloaded my Freestyle Libre file and was very pleased with the results, that I have had 88% time in my desired blood glucose range, even with the steroids messing up my blood sugars for several days.  He was very encouraging and loved my 6.0 HgbA1C, showing pretty good sugar control.

Next I rushed to lunch with my lunch bunch friends, H., M., and S., at our favorite Turkish restaurant, and had lentil soup and lahmacun (ground meat on a cracker-thin pizza-like bread).  All sat quite well on my stomach, with no indigestion at all.  I began to worry that I’d been given a placebo instead of chemo.  Except for the caustic poops and loose stools that were well-controlled by imodium, I might have suspected they lowered the irinotecan dose or something.

I was feeling so overconfident in the chemo side effects, though, that Wednesday I purposefully didn’t take my 4mg dexamethasone.

The next day I regretted that decision.  I had some nausea at waking, not as bad as usual, but still there as a reminder not to mess with the regimen!  I didn’t feel like I needed Zofran to deal with it, so although I brought it along I didn’t ever use it.  I went into work, had lunch in the cafe downstairs, and made it back to my house in time for chemo takedown with nurse J., a home health care nurse.  He is a cancer survivor and I truly enjoy talking to him, his attitude is inspirational and comforting, and he truly cares about his chemo patients.  Nurse J. flushed my port line with saline, then filled it with heparin to prevent clots from clogging it, then took off the sticky dressings and removed the huber needle in one swift go.

It is always wonderful to be free of the 5FU chemotherapy pump and the port access.  I worked from home in the afternoon, then took a shower.  I felt good enough that I drove to pool league and played an 8-ball match against another 4 and very narrowly lost though I played really well.  Then I played a 9-ball match against a 5 and though I pulled way ahead for the first 18 balls, he caught up and beat me by a few balls.  I was still proud of how I played, particularly since I was fatigued from chemo week.

Since I also didn’t take my dexamethasone on Thursday I woke up with a little nausea on Friday also, but it was tolerable and went away after I had some bread and butter.  Friday night my pool team played in the 9-ball World Qualifiers, a.k.a. the City Tournament, where the best pool teams from the bars in our region compete for a spot to play in Las Vegas.  We played really well, though whoever was putting songs on the jukebox was about a hair’s breadth from jumping off a bridge, there was a never-ending lineup of the most angsty, goth, and depressing songs you could imagine.  We ended up losing but since it’s a double-elimination tournament we got to play at 10 a.m. Saturday in the next round.

We also lost that round, but only by 2 balls.  I had another performance where I sunk the first half of my balls quickly and was way ahead, but my opponent kept the pressure on and worked her way back to beating me.  Sigh.  We were tied at the beginning of the fifth and final match, which was a sudden death match owing to the time, and all balls counted double.  It was a very exciting match with our best player D. and their best player, and the other guy eked out a win in the end.

Losing was nice though, because I didn’t have to go to the next round at 2:30pm, and it freed me up to go with my wife to my coworker J’s house for Lunar New Year.  She and her husband made several chinese dishes and taught us how to form the dumplings, which they pan-fried.  We started with delicious tea, served in an intricate set of cups where you fill a tall cup, then flip it into a shorter wider one before drinking it from the other cup.  Then we shared a meal of dumplings and several other wonderful dishes, one with a kind of shredded pressed tofu, one with wood-ear mushrooms, and another with a sheet-like mushroom protein with celery and cashews, then for the next course we had a chilled pumpkin soup made with a pumpkin they grew in their garden.  All very very delicious, and though I worried about it being bad chemo week and my digestion, every dish was comforting and felt super healthy.  I am super grateful that my coworker invited us over and shared their traditions and we swapped many great stories that night.  What a wonderful time!

That evening, I fell asleep in my recliner and slept like 6 hours before waking up and going to bed.  I was exhausted after a very long day.

Sunday, the lunar new year of the rabbit, I woke up and did the dishes in the sink.   I spent the day running errands and asian market shopping, then having lunch with my friend J. at a Korean BiBimBap restaurant.

Then came the Good Week!  I was feeling pretty well, though over the weekend I developed some mouth sores (an irinotecan side effect I often get after a handful of days), and the worst one was under my upper lip rubbing against my teeth.  Any kind of acidic food would really set it off.  I rinsed with baking soda and salt water, and it provided some relief and I think healed things faster.

On Monday we had a lunar new year celebration in the research building’s cafe at work with dancers, drummers, bao buns, spring rolls, and lo mein.  It was a nice lunch break full of culture!

Tuesday, on my wife’s day off we went out for empanadas for lunch, then for dinner we went to our favorite local Indian restaurant and I ordered lamb korma, which is not very spicy (I made it several weeks ago and the recipe I used didn’t call for a lot of chili pepper), but it came out pretty darned spicy and I could only get down a quarter cup or so.  It was delicious!!!!  But after about 40 minutes I suffered some fairly debilitating indigestion and had to lay sideways in bed for a while before I felt better.  I had some ice cream thinking the cream would coat things with a comforting layer of diluting dairy, and it seemed to work really well.  Not sure if it comforted me or my intestines, but it was a success and I didn’t feel too badly anymore.  Until the next day at poopy time, but that’s another story!

I went to pool league again on Thursday night, feeling much better this week, and played a very good level 4 player, so we both had to win 3 games to win the match.  I easily won the first and second game for a 2-0 lead, lost the third game for a 2-1 score, then won the fourth game ending with a 3-1 score (which in APA scores our team 2 points).  I played really well and had one miracle shot some team members called Wizard.  I figured there was a one in a thousand chance that shot would work, and it did!

Friday I went into the office for work, and returned in time to have several of my wife’s friends over for Cards Against Humanity games.  It was a fun time especially since because of COVID it’s been actual years since anyone but family has been inside my house I think.

Saturday morning, my crown tooth came out when I was chewing my morning probiotic gummy.  I had to have days of soft food until Monday at 3:30pm when my dentist could see me and cement it back in.  Luckily it wasn’t painful or cold sensitive, just a little tender around the gums.

I wanted something soft and eggy for breakfast so I made crepes filled with raspberry or guava jelly. This recipe has been an O family tradition for a couple generations, and we always called them jelly pancakes as kids. My oldest son came down and demolished several crepes. My middle child had one, and my youngest wasn’t that into them, and only had half of one.  It was more carbs than I ordinarily eat, but all the breakfasty proteins I could think of would be hard to chew with my crown missing.

Jelly Pancakes aka Crepes

And on Monday the crown was reinstalled after some x-rays, all was well, no underlying decay or reason for concern, just that the old cement had had enough. I had to wait a couple hours before eating…

So that night I made pork butt Pad Thai. I attempted to make it on Saturday night too using a different recipe but I lacked bean sprouts and salted pickled radish, to make the dish more authentic. Also on Saturday I mis-measured the dried shrimp which made the dish too salty and a little manky because that dried shrimp is powerful stuff. So on Monday I went to a different asian market and found all the ingredients I needed, and used my leftover half pound of fresh rice noodles to make an absolutely wonderful dish. This time I also followed a recipe I got from my sister’s Thai cooking course, and made the Pad Thai sauce from scratch with tamarind, palm sugar, and fish sauce. Some folks add ketchup too but… bleagh!! Top off with roasted peanuts crushed in the mortar and pestle, a slice of lime, some fresh bean sprouts on the side, and I had maybe a 90% restaurant quality dinner! Yum!!! Though my blood sugar freaked on the rice noodles.

I was really good on Monday about not thinking about the next day’s chemotherapy #24, because doing so would give me an upset stomach, just nerves I guess.  All in all though, this cycle of chemotherapy was the easiest I think I’ve ever had.  I had more than a week — more like 10 days — of feeling good, only a bit fatigued.  It seemed frankly miraculous, and I got to wondering if I’m building up an immunity to chemotherapy.  I should hope not, as that would probably mean it isn’t working, and I do want to believe that it is working.  So, fingers crossed, we go forward into the next cycle!

Chemotherapy #22, Christmas and a New Year

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It’s been a long time since I’ve given an update, and chemo #22 happened on January 3, 2023. It was a double-whammy chemo, so my HAI pump got filled with Floxuridine, and I got the FOLFIRI systemic adjuvant therapy at the same time. This cycle had more nausea than usual, not as bad as the last double-whammy which was the worst I’ve had, but still fairly awful for 2 or 3 days. It was helped a lot by the 4mg dexamethasone. I suppose I could go up to the recommended 8mg dexamethasone, but it messes up my blood sugars so much that I carefully balance nausea with sub-orbital sugar spikes.

Since the last update, we had Christmas and a New Year! Christmas was kind of awful since we had to cancel a visit to Virginia to visit my parents and sister. It’s really hard to coordinate a trip with a family of five, where four of us are working and one is in high school. Since many of us had COVID we just couldn’t risk spreading it to our family, especially to my parents who I want to keep safe from this thing.

So we had an unplanned Christmas at home, and it was surprisingly nice. We didn’t plan or shop for a Christmas dinner, so my in-laws took pity on us and brought us half of their Christmas dinner, though we couldn’t share it together because of the COVID. It was a full dinner with Turkey, stuffing, squash casserole, wine (that I couldn’t have), oyster pie, pecan pie, and pumpkin pie. We are so grateful for the effort that it took Grandma K and Grandpa J to feed us.

We were kind of getting a little cabin fever stir crazy being locked down with COVID, though the 2 of 3 children who caught COVID had just been vaccinated and were sick for only a day or two, then they beat it and tested negative very shortly afterward. On Christmas Day I had a Christmas Miracle and finally tested negative for COVID! And again 2 days later. It was so nice to be free!

It was also nice to have some days off from work and just relax and work on projects at the house. One morning I woke up and my wife was cleaning, and I have a sort of happy-marriage unwritten rule that NO ONE CLEANS ALONE. So I spent time straightening things, flattening cardboard boxes, cleaning the counters with bleach wipes, cleaning the cabinet faces with Magic Eraser, and I was trying to clear off the table but clutter on the table is a perpetual problem in my household. Or it might be better to say it’s a perpetual problem in the household mostly due to me. Currently it’s a staging area for my pan lids while I make little racks on the backs of the cabinet doors to store them. As everyone knows, once a little clutter ends up on a surface, it quickly becomes a contagion of clutter and you find yourself quickly overwhelmed.

Hiking on the Eno

A couple days after Christmas, now COVID-free, I went to Richmond to visit my college buddy, get some amazing Cuban food, and also have some duck gumbo at the Roosevelt. I can’t tell you how amazing that was.

Delicious Duck Gumbo

Then for New Year’s Eve I went to the beach with my pool friends as we often do. I couldn’t go last year because of the cancer, hospitalizations, chemotherapy, and such. So it was nice to get to visit them. Our trip was dampened and cut a bit short though, by our discovering that one of the rooms of our rented place had a recent bedbug infestation and one of our party was bitten up badly enough to require medical attention for the allergic reactions. Fortunately another of our party was an entomologist who had done research on bedbugs, and they were able to carefully inspect all the other rooms and assure us that the rest of us were in the clear. But we also got valuable advice on how to isolate our clothes into bags and then launder them, drying them more than 60 minutes on high. On returning home I isolated my bags and possessions, cleaned everything carefully anyway, and was luckily able to avoid any infestations. Yikes!

I ended up taking Monday January 2nd off work to sanitize all my stuff and have a little vacation from my vacation. And as usual, knowing there was chemotherapy the next day, my stomach was worried and unsettled every time I thought about it. I’m actually getting a little bit better at putting it out of my mind and not getting psychosomatic chemotherapy side-effect feelings before the chemotherapy actually occurs. Sometimes the dread is worse than the actual thing.

On second thought, I take that back. The actual chemotherapy isn’t at all better than the sense of dread.

So on Tuesday the 3rd we were back on the routine, 8:45am at the lab for port access and blood draws. There is one particular port nurse that I’m always happy to see, she is able to access the port completely painlessly and she uses a gel dressing and allergy-free Tegaderm covering to protect the accessed port and its huber needle. When the lab results came through an hour later, my liver enzymes were back in the normal range, AST=32, ALT=39! I can’t believe how resilient my liver is when I was off the HAI chemo for 3 weeks, I am happy that it keeps bouncing back. My platelets are still around 114 (should be >150), hemoglobin 11.5 (should be >13.7), red blood cell count 4.08E12 (should be 4.37E12). I take supplemental iron to help improve this, but it seems to just keep the level steady. My CEA levels tested at 8.8 (was 9.7 last time), so a downward progression is a hopeful sign.

The meeting with my oncologist went well, on the systemic chemo only, I had very little nausea and few side effects. Increasingly I am having mouth sores due to the FOLFIRI, and have to swish around some water with salt and baking soda to get some relief, and avoid acidic foods. Ketchup is the WORST, it is like torture. And in the last week or so I’ve had a sore under the front of my tongue that has been very irritating when I eat. Other than that, I don’t have many complaints.

We had a little breakfast at the medical pavilion’s Panera bread shop, I had a fruit cup and some unsweetened iced tea, and we barely returned to the infusion clinic before we were called in for the infusion. It was a super quick day waiting-room wise.

We had the regular chemo infusion, and while that was infusing, nurse O accessed the HAI pump reservoir and extracted the syrupy glycerine, which takes a while due to its thickness. She filled the pump with Floxuridine, and that concoction also contains dexamethasone, which has caused some higher blood sugars than usual, even though it’s a smallish dose. When the irinotecan infusion was done, I was attached to the 5-fluororacil pump and sent home by about 1pm, which I think is a new record of efficiency.

Wednesday morning I woke up around 4am feeling very nauseous and I took a Zofran immediately and lay in bed for another hour breathing through the urge to throw up, and holding an emesis bag against my chest. But the feeling soon passed, thank heavens for Zofran and how quickly it works, and I got a little bit more rest before having to return to work the next morning. I got another bout of nausea at work around 5pm and took another Zofran, and that was the last I needed for this cycle.

I had more poopy discomfort this cycle, but it was tolerable and though I had about 3 days of bleeding and pain, I got through it okay and was feeling much better by Martin Luther King Day.

Thursday I felt good enough to go to my pool league and I won a 9-ball match against a level 3 player (I am a level 4). It was really fun to play and see the team again, and get some practice for next weekend’s 9-ball city tournament.

Friday January 13 was a super weird day, it seemed like everything was breaking and going wrong. At work, Windows Defender decided to uninstall a bunch of software from my coworkers’ machines, which caused a bit of mayhem. I ended up taking a half day off because my wife had some chest pains that we went to the emergency room to have looked into. Luckily it didn’t end up being cardiac related, which we were worried about because we’ve repeatedly read that people who came down with COVID have had heart issues afterwards. Thankfully she is feeling mostly better, and will have some follow-up visits this week to investigate further. Keeping my fingers crossed!

Me and the family drove up to Virginia and had a belated Christmas with my parents, my sister and brother-in-law, my niece and her fiancé. On Sunday we had egg quesadillas for breakfast, opened presents together, then I went to church with my Mom.

Headed to church with Mom

I was thrilled with the new renovations to their church, it looks beautiful, much better than before with a new altar and the addition of Joseph and Mary to either side of the crucifix. Then we returned home and I made Indian Wedding Hash for our belated Christmas dinner. My father made a spiral ham, my sister threw together appetizers like shrimp scampi and pigs in a blanket, a vegetable tray and olives, charcuterie and cheese. Then she whipped up about several amazing side dishes like bacon-wrapped asparagus (pre-prepped by my mother before we arrived), riced cauliflower with mushrooms, Watergate salad, corn custard, carrot casserole. We were all taking orders and direction from my mother, since we didn’t want her standing too much and doing the whole thing. I love when I get to cook with my sister, I often forget that we always make an amazing team, anticipating each other’s needs and helping each other out always. I love my sister to the ends of the earth and am always amazed at how easy it is to hang out with her.

My mother’s cousin C and her daughter joined us for dinner and brought mini Bundt cakes for dessert. We had the most delightful time, dinner for 13, and it went quite smoothly.

We were all super tired and napped after dinner was over, and turned in early since we had to wake up and get on the road home by 7am in order to get our middle kid J to work by noon. The trip home went off without a hitch and we made it in a little more than 4 hours. There was an unbelievable lack of traffic delays on 95 south, we were very fortunate to have an easy trip.

I had this laundry list of things to accomplish when I got home, and pretty much didn’t do any of them. I had lunch with my lunch bunch friends, did some cleaning and unpacking, took a long nap, and worked on my blog in the late evening.

Tomorrow, January 17, is chemo #23. We will start later in the day, after 11am, so it will likely be dark when we get home. I’ve been a bit less anxious about tomorrow’s chemo than I usually am, I’ve gotten better at putting it out of my mind.

Chemotherapy #21

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Everyone has COVID. Well, not everyone, 80% of my household has it. My youngest child seems to have completely dodged the bullet, but he had it several months ago so I presume he is temporarily immune. But he is at school all day and can’t bring me to my chemotherapy appointment. My wife and two older kids have COVID, the more actively suffering type that I would never inflict on a cancer clinic. My friends have COVID. My friends’ friends have COVID, except for the ones who had it a couple weeks earlier.

I really tried not to spread the plague in my own household. I tried to stay in my bedroom, and whenever I went downstairs to sit in my recliner I wore a mask. When I used the bathroom I used special medical wipes to wipe down the toilet, flush handle, and sink. Everyone caught it anyway. I feel bad.

There was a lovely bright side though, I got two presents in the mail. Both showed an attentiveness to my last chemotherapy blog post where I talked about my chemotherapy bag. I said I never had a handkerchief, and my old friend M. gifted me 3 beautiful cotton handkerchiefs with an ‘O’ embroidered on them. So classy, like my friend. I now carry one in my chemo bag and another in my vest on my person. With the COVID infection, they have already come in super handy.

I also got an anonymous gift of a bag of Dove Dark Chocolates. I love these so much and the ones I put in my chemo bag all melted in the summer. I’ve learned my lesson and now I only bring a few with me at a time, and I make an extra effort to eat them while I get infused so my supply is fresh. Thanks so much to my benefactors for the attentiveness and the thoughtfulness of these gifts! Snif! I feel seen.

So, the day before chemotherapy I took a COVID test and it was negative!!! I was so happy! My oncology team said on chemotherapy Tuesday I will have been 10 days into it, and after the antivirals I shouldn’t be contagious. So we don’t have to cancel everything scheduled for today.

Yay! (I think?). I was as happy as I suppose you could ever be about going to a chemotherapy session.

So I showed up on time for my lab appointment, to get my port accessed and blood drawn. The receptionist asked me, “have you been exposed to COVID or had a COVID test in the last 10 days?”

“Yes, I tested negative yesterday but positive Saturday, and the Wednesday before that.”

The nurse looked at me sternly and said, “you need to go. Leave. Get out.”

I was immediately on the defensive. Here I was in my N95 mask, which was clearly good enough to keep my family from getting… infected… Yikes. Point taken I guess. I explained that my oncologist asked me to come today, and I have a CT scan. She should call their clinic and ask.

The receptionist walked off to consult with others for at least 5 minutes, returned to confirm that I had a negative test yesterday, was gone a few more minutes, and then returned to say I could get my port accessed and lab work done. I was given a pager, and I slunk off into an empty corner, far from any of the other cancer patients. The pager went off pretty quickly and I went to see the port nurse. I’ve had this nurse a half dozen times, and we always have a good conversation. Thankfully, she always gets the needle into the port fast, with no more pain than you would get from an insect bite. I told her about my COVID infection last week and she was pretty chill about it. She drew off three vials of blood and sent me on my way.

I had a CT scan scheduled next, and was already 15 minutes late for it. I went up to the 1st floor radiology clinic. The lab is actually on floor zero, and the radiation clinics are downstairs on floor zero-zero (00). It is a strange numbering convention. Those floors don’t actually exist, they are a figment of your imagination. All the real stuff happens starting on floor #1. It’s like those hotels where you’re on the 13th physical floor, but it skips 13 and says you’re on floor 14 because if the floor said 13 you know you would be chased around all night by psychotic Jason Vorhees wielding a machete. But the truth is that it’s still the 13th floor, even if you call it Goldfish Food Flakes. Jason is still going to dash you into tiny pieces. Or, say you’re in a Trump building: you’re actually on the 13th floor but it says you’re on floor 97. We are playing fast and loose with floor numbering these days, and I think it’s contributing to the unraveling of society.

The receptionist at the cancer center’s radiology clinic explains after learning my name, that I am supposed to be at the radiology clinic of the main hospital, which requires me going out in front of the building and waiting in the cold for a shuttle that will eventually circle back to the main hospital. I ask if there is a warmer way to get there, that might involve the use of my perfectly good legs. She points to the next building over, the medical center, and explains that going left until you get to the gift shop, turning right, then walking a long way, will take me to the hospital via a concourse.

A walking adventure! It is always perfect to have a nice indoor stroll to take in the sights and feel more relaxed when you’re already 25 minutes late for your next appointment. But I found the gift shop, and strutted through the concourse and looked at the cool folk art for sale in the cabinets off to the side. I leaped out of the way when a lady on a couch dropped her metal water bottle and it rolled loudly across the entire concourse through a gaggle of utterly confused-looking people in lab coats who danced around it like it was the alien that just burst out of the chest of crewmember Kane in the movie Alien. I picked it up and walked it back to the lady, the kind of solution nobody had ever thought of before, and the look of relief on their faces made the whole endeavor worth it.

There is this weird circular hallway in the middle of the main hospital that defies all physics. The concourse connects to it, and I seemed to remember that radiology would be anti-clockwise to the right, but after going all the way around, I didn’t recognize the hallway and also weirdly, I also never came all the way back to the concourse. I guess whatever wardrobe-portal magic it uses only works if you were going clockwise. I ended up trapped in a hallway with some elevators, and eventually recognized the front desk, walked towards it, returned back to the circular hallway from a different perspective, turned left, and went straight to radiology.

I only waited a minute or two before I was taken to the CT scanner, which was staffed by Brandi and Crystal, which by a very weird coincidence are the same names as my cousins, who are sisters. They got my pants down, hooked my port line up to the iodine contrast dye injector, and the machine spun up to start taking pictures. I was told a few times to hold my breath, the table sliding me in and out of the CT scanner, then they warned me that the contrast dye is coming. Just off to the side is a syringe, thick like a beer bottle and containing almost as much clear liquid, and the plunger automatically pushes an enormous dose of the liquid into your port/IV line, you feel the hot blush of iodine hit your circulatory system. There is a little more breath-holding and sliding in and out of the scanner, and we’re done.

I made a little mental note to wear sweatpants next time, as you can just leave those on while getting a CT. And I usually wear sweatpants on chemo and hospital days, just for some reason on this day my khakis wanted to be paired up with my button-up short sleeve shirt, they convinced me it would be more classy somehow. Next time I’m just going to rock the sweats-with-dress-shirt look as usual.

I had to get back to the cancer center via the circular hallway and concourse, and since I wasn’t late for anything the circular-hallway-magic worked better this time and I found my way without incident. I also discovered that there is another concourse on the second floor (or maybe that is floor #1), that takes you over to the cancer center without you having to go outside at all. I took note of a cute little lounge or break room by that concourse that had some tables and chairs.

Next to the oncology clinic, where I was actually a half hour early and so had to wait for a while. I got weighed at 200 lbs, had quite low blood pressure at 97/127, and was put in a room to wait for the oncologist. Before too long my oncologist and his PA both showed up and asked about my last cycle’s adventures. We talked about how much COVID sucks, how the last round had the most epic nausea so far, how to deal with that nausea better if it happens again, and honestly I wasn’t sure what to say without my wife there to remind me of every complaint I made to her in the last two weeks.

When both the oncologist and his PA show up, I know there is going to be good news or bad news, or a decision to make regarding surgery so I’m waiting for the big reveal. This time it was good news! The CT scan shows that my final liver tumor has shrunk almost 25%, which is an encouraging sign. We schedule a few more rounds of chemo and another scan on Valentine’s day. I asked if we could get a romantic picture of my heart while we’re at it. The joke confuses them, because that would cost extra I think, and it would have no diagnostic value.

I go upstairs next and check in to the chemotherapy infusion clinic. There’s always quite a wait for a room after check-in, and I’m hungry for lunch so I take my pager and go down to the newly-discovered concourse to the medical center building, where there is a Panera bread store. I get a bowl of tomato soup and return to the little break room by the concourse and eat my lunch. Then I return to the infusion clinic waiting room and listen to music until my pager goes off.

Lunch in the medical center concourse lounge

It will be THREE weeks before my next chemo session, a lovely Christmas break of a week, so the nurse accesses my HAI pump, extracts the Floxuridine, and replaces it with glycerine. The glycerine is like maple syrup and takes so much longer to push in and then flush out, and then push in another syringe of it. It also takes longer for the glycerine to infuse, so I can stay away an extra week without worrying about it running dry. The process of filling the pump with glycerine is very lengthy, so the nurse and I engaged in a long conversation about Chicago and then Italian food, which is the food of her countrymen. I just *love* Italian food! She gives me a recommendation to try a certain restaurant in Raleigh and report back.

I get the dexamethasone 12mg, the 8mg zofran, and some atropine, and 30 minutes later the irinotecan starts. This time, thankfully, I didn’t have the quick-onset nausea I had in the last cycle. The 90 minutes of irinotecan infusion goes by quickly since I fell fast asleep, and then I get hooked up to the 5-fluouroracil take-home infusion pump which will infuse over the next 46 hours.

I was able to get back to the car and drive home without incident. Unusually, I was sort of hungry when I got home so I had some food, did some work, then crashed for a long nap around 6pm.

This cycle I’ve been able to eat better, and have had less nausea which is always nice. Seeing as how we all have COVID, our food was running low and I didn’t have on hand a lot of really healthy stuff, so I made a pick-up order at the store and they brought food out in a cart so I could load it into my car. From that I was able to make a nice mediterranean salad with tomato, red onion, cucumber, parsley, feta cheese, olives, sumac, olive oil, balsamic vinegar, salt and pepper. It was good but my stomach reminded me that during irinotecan, pickled stuff and vinegar upsets my digestion so I paid for that a little. The kids made a batch of buffalo wings, and I had a couple with no buffalo sauce… I think you would call that fried chicken. It was good and they’re getting very good at cooking wings.

Later in the week I ground some lamb and made a Shepherd’s Pie that hit the spot. It was a new recipe, and I like it better than some of the ones I’ve tried before.

Shepherd’s Pie

On Wednesday I tested positive for COVID again, and also again on Friday. I feel fine, but have a bit more coughing and sniffles as I’m fighting the tail-end of the disease. I feel like it’s tougher and makes me more tired, when I’m also dealing with flushing out a chemotherapy treatment. I haven’t had a whole lot of other symptoms this cycle except for an increase in fatigue, and I’m definitely eating better and handling a wider variety of foods.

The COVID isolation was just that — isolating! I went out walking a few times just to get away from my secret lab. And I continued testing positive for COVID on Monday, the following Wednesday, and again on Friday the 23rd. But as I was feeling no symptoms, had no fever, and my cough went away, I wasn’t terribly worried. But it was discouraging to keep testing positive. I did contemplate a whole lifetime of COVID-positive tests, maybe taking on the name COVID Mary like Typhoid Mary.

On Wednesday the 21st of December I started having some transient pain in what felt like my liver — under my lowest rib on the right side — and mostly I noticed it late in the day, and it seems like it might feel worse if I’ve had sugar or fruit. The next day it had radiated almost 90% to my back. I don’t feel it when standing or sitting, but when I sit back in the recliner or lay down in bed, it was giving me increasing little spikes of pain — maybe a 4 on a scale of 10.

Friday night I watched my favorite Christmas movies, Die Hard and It’s a Wonderful Life, while wrapping Christmas presents. After leaning over presents for a few hours, my back right side pain was killing me. I went to bed and complained so much that Jen woke up and got herself ready for an emergency room visit while I found a way to fall asleep by propping up my legs.

Saturday, I was worried the pain might be liver pain and not back/musculoskeletal pain, so I had the hospital page my oncologist to call me. I never got a call back, but it was Christmas Eve so I’m not going to freak out about that. Saturday I woke up feeling a bit better, still in pain but not as intense. I’ll leave a MyChart note for Monday and see if I get an answer about it then.

I will post more news as time goes on, but that’s it for now!

Our Little Maggie Rose

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Maggie opened her mouth and looked like an angel every time you pulled her arms apart

It was on this day, 25 years ago, that our infant daughter Margaret Rosemary died in our arms at home in the bed that we sleep in every night. I still wake up sometimes and feel her presence with us in that space. She will always be here in our house and in our hearts. She is always with us, as her blue urn is in our bedroom. And one day when I die, my wish is for us both to be buried together in the cemetery on the reservation where my ancestors sleep.

Memory of Maggie at my bedside

She was born on August 10, 1997 at 1:48pm, at a free-standing birthing center, attended by nurse midwives. She was 4 lbs 14 oz, born late at nearly 43 weeks of gestation, but she needed that extra time to be strong and ready.

Shortly after her birth, we named her and filled out details of her birth certificate while her APGAR score was determined, and the score was worrisome. I know, because the midwives chose to never share that information with us. I know they didn’t want to cause a panic, but the thing about panic is that it always arrives eventually.

This picture of our “little peanut” was taken shortly after her birth

A doctor “stopped by” to have a look at her, and we were told she would be taken by Life Flight to the nearest Neonatal Intensive Care Unit. As Maggie’s mother wasn’t in any fit state for travel, I went with Maggie to the hospital. After hearing the words “Life Flight,” I sort of expected a helicopter even though I knew it was only a short trip to the hospital. I’ve never gotten to ride in a helicopter, and I’m not exactly sure that I ever want to. Maggie was bundled up and placed in a small lucite container with tubes and oxygen connected, as though she was a tiny E.T. being whisked off to a government lab for study. We were loaded into an ambulance and drove casually to the hospital, I don’t think they even put on the flashing lights.

We arrived at the hospital and the NICU staff explained they would evaluate her, hook her up to IV fluids, and generally do things that parents would find alarming. Frankly, they didn’t want me present because people freak out. I am not the freaking-out type, but they wouldn’t know. So I sat by my lonesome in the waiting room, contemplating what other surprises lay in store ahead. By the time a baby is born, her parents have very likely laid out at least a vague game plan for who she would be. Maggie would have her own ideas about who she was. She would have a real knack for kicking your plans in the butt and teaching you how to live life on her terms.

As I sat in the waiting room feeling kind of sorry for myself, a family of about 8 people came in and held hands in a circle to begin a prayer. They didn’t pray though, they just paused and looked at me, and I realized they left an opening for me to join hands with them. Without a word, I got up and joined them and they prayed for their loved one and their recovery, and also kindly prayed for me and asked me to name the loved one I was praying for. These were really the first people Maggie was introduced to.

After about an hour I was collected and taken into the NICU to find our daughter connected to tubes and oxygen. The NICU doctors explained that there was concern about her heart from chest X-rays and doppler flows, and it appeared that there was a correctable problem called a Patent Ductus Arteriosis where a tiny shunt between heart and lungs normally shrivels up when the lungs start processing air. Before too long, Maggie’s mom arrived and we both got to hold her and learn how to do Kangaroo care — placing the baby on our bare skin for warmth and contact.

In the ten days that followed, every day revealed new problems: confirmation of the Patent Ductus Arteriosis, discovery of a Ventricular Septal Defect and an Atrial Septal Defect, neurogenic bladder, muscle tone problems, and feeding and swallowing issues. A karyotype was ordered because the pediatrician suspected a genetic syndrome, and days later the diagnosis came back that Maggie had a genetic anomaly called Trisomy 18, or Edwards’ Syndrome. Most Trisomy 18 babies do not survive the birth process, and of the survivors, more than 90% of Trisomy 18 babies do not survive their first year of life.

We had a troublesome meeting with a genetic counselor who only seemed to be saying that if we had undergone prenatal genetic testing, we could have avoided this “problem” which was deeply upsetting. You just don’t tell the parents of a beautiful baby girl their daughter would have been better off aborted. I was very put off by this and asked questions that would better serve our circumstances like, how should we prepare to care for this child? What will her needs be? The genetic counselor seemed to be of the opinion that Maggie would be a vegetable, which also wasn’t very helpful.

We had discussed at great length during the pregnancy that despite being raised Catholic we thought it might be more meaningful for us not to baptize our children as babies — after all, God has no grandchildren. But faced with Maggie’s dire situation, we called for the priest from the nearby Catholic church to drop into the NICU and baptize our daughter. I do believe that sacraments are a celebration in a time and place and in the context of a community, of something that is always true. It is always true that God wants to save his people, therefore I have always believed that unbaptized people are always welcome in heaven. Performing a baptism is enveloping that salvation in a community of love so that everyone becomes a participant in the salvation of the baptized person, whether child or adult.

It puts me in mind of Black Elk Speaks, where Black Elk explains that if you have a dream or vision that is good for the community, you should dance it with everybody and tell the story so that in hearing it, everyone will, consciously or not, bring the dream to reality.

So we baptized Maggie in the NICU with a Catholic priest, who afterwards gently reminded us to have our mountainside wedding convalidated in the Catholic Church. Always good to have your bases covered I guess.

The baptism was like magic. Maggie started doing so much better and the NICU finally started to talk about us taking our daughter home. We had to get a special lying-down car seat for her, and we were especially nervous about how to keep her alive. She needed around-the-clock care. We had to learn how to put in a nasogastric and orogastric tube so that we could feed Maggie breast milk, since with her heart running a constant marathon, breastfeeding would be difficult if not impossible since she needed to breathe. We also had to learn how to massage her neurogenic bladder so that it would empty and not cause urinary tract infections.

Our little peanut comes home

And before we were even quite ready to take off our training wheels, we were driving our baby home and looking at each other nervously. But having Maggie at home was so much more serene and relaxing. We had to sleep in shifts because we had to follow a strict schedule of feeding, changing, and engaging with the baby so her heart would get enough calories for her to grow and not waste away.

Snuggling with Maggie
Happy Family

Also once we were safely home, all the family began to drop by for a visit. Maggie charmed every single one. She had a way of looking absolutely lovingly at whoever was holding her. She was just a bundle of love.

My Mom, Maggie’s Mom, and Maggie

We were getting really comfortable with the day to day details of caring for our daughter and tending to her needs. It required us to both be fully capable parents, and we were often exhausted, but we learned to take over and give each other breaks to see a movie, visit friends, or go grocery shopping. I can’t tell you what a powerful life lesson that was. In retrospect though I was a sweet person, I was not mature enough to handle caring for a child and a family. In very short order I had to learn to be supportive and helpful. I think if my first child had been anyone but Maggie, I would never have been the father I was to my other three kids. I certainly was overly career-oriented and didn’t put much emphasis on work-life balance before Maggie.

Before having our child, my wife and I interviewed pediatricians. To tell the truth, I was less engaged at that time so she did almost all the legwork, I just had to show up and look pretty. We decided on a pediatrics practice that was just amazing. Shortly after Maggie was baptized we called them and explained that our daughter had Trisomy 18 and we weren’t sure if they were prepared for that. They pretty much laughed and said, “we have a nurse A. who has a 27-year-old daughter with Trisomy 18 and she literally wrote the book on caring for Trisomy 18 children.” This was such an unlikely coincidence that I still wonder about it. The pediatrics practice was so helpful for us in seeing our daughter on short notice for her frequent care needs. We will always be grateful to them for that.

Feeding Maggie via open syringe and OG tube.

Despite both our parents living in Virginia, it seemed like every weekend one set or the other was visiting to give us relief and spend time with their granddaughter. My in-laws, Grandma K. and Grandpa J., loved cuddling with Maggie and learned whatever they needed to learn to send us out on a dinner date and give us a bit of normality in our lives.

Grandma K. and Grandpa J.

We had a vintage pram that Maggie enjoyed rides in, and it also served as a daybed where she could sleep beside our bed. We were so in tune with her breathing that if it changed at all, we would both wake up in an instant and be ready for anything. It is strange how attuned you become to even baby breaths.

Maggie in the Pram

Not unsurprisingly, Maggie was nowhere near the vegetable we were led to believe she would be. She had strong preferences and made the most unbridled expressions of joy, annoyance, or wonder. I don’t think anyone expected her to have such a strong personality.

Three generations of strong women

My sister does quilting and made the most beautiful bunny quilt for Maggie. Saying that my sister does quilting is like saying your heart does beating. She has about a thousand incredible quilts out there in the world, and this one stays in our bedroom now and always gives me a smile and warm fuzzies when I see it.

Maggie and the bunny quilt from Aunt S.

Maggie had a pose that we called “baby power” where she would raise a fist in the air. I used to wonder why she made this pose; was it a feelgood stretch or some kind of statement that the power of babies cannot be denied? Then I caught a photo of baby and mama sleeping in the baby power pose, and I realized maybe it was inherited from Mom.

Maggie and Mom snoozing with Baby Power
Maggie and Mom and their big blue eyes
I think by this time both girls are a little sick of me snapping all these pictures
Baby Power!

Uncle J.D. lived close by and this is one of my favorite pictures of him being charmed by Maggie. She was so engaged with people, and would just stare into their eyes exuding love and admiration. It comforts me often to think of them together in the Sky World, Uncle J.D. going exploring with her and teaching her all his earthy and pragmatic life wisdoms.

Maggie and Uncle J.D.
Uncle J.D., Maggie, and Maggie’s Mom

Maggie loved sleeping on my chest, despite the fact that I burn like a furnace and we would both get sweaty. I would worry about her temperature regulation, and would also be super self-conscious about not falling asleep myself. So I spent a lot of long hours watching my little baby sleep. If she was fussy it always comforted her to be warm and snuggled up. To tell the truth, I can’t think of many times that she wasn’t being held by someone, and she made it quite clear that that was her preferred state of things.

Maggie continued to grow and thrive against the odds. There were some difficult times, like when we had a big hospitalization where an out-of-control urinary tract infection left her weak and needing serious medical care.

The almost-hourly blood draws left her low on blood and needing a transfusion. It was stressful and a very touch-and-go time, but the hospital staff were always hopeful and encouraging and helped keep all our spirits up.

But Maggie was a fighter and pulled through to be her bright, sparkling self in no time.

As Maggie grew to more than 10 lbs, we were told she would be big enough to tolerate surgery to close her Patent Ductus Arteriosis. The hospital surgeons ended up deciding that it wasn’t moral to subject her to the suffering of a surgery and its recovery, if her quality of life wasn’t ever going to be that high (because, vegetable). As a result, her heart struggled to get enough oxygen so we ended up with an oxygen concentrator giving her blowby oxygen to help keep her comfortable.

Maggie got bigger and spent more time awake and engaging with her family and her environment. We had a bassinet beside our bed and we stopped putting her in the crib in her own room. We were just too attuned to her breathing and sounds to be comfortable not hearing them. Our cat Turbo would sleep on the shelf below Maggie, and was shockingly never attempting to get into the bassinet with her. He seemed to guard her when she was sleeping.

Baby Power!!!

After a hospitalization her health situation became more dire. Without surgery to fix heart issues and her continuing to grow thus making the heart issues worse, her systems were all becoming strained. Urinary tract infections, antibiotics to treat them, and greater nutritional needs were taxing her more and more.

Grandma K. hanging out with Maggie

Kermit was one of Maggie’s favorite things to look at. She would study him carefully.

In the end, Maggie had a severe bleed in her stomach (ulcer), that led to her quickly deteriorating and passing away on December 6. My parents were down that weekend to help out, my father was raking the yard, my mother was cooking, and none of us were ever going to be ready for the moment. I remember being inconsolable when she died, and we held her for a long time until our friend M, a funeral director, took her from us. Or maybe we took her there. I remember both things happening.

25 years later, I remember all the good memories and don’t visit the bad ones enough for those memories to be vivid. After 25 years now, I have to say grief doesn’t get better, and my heart always goes out to all parents that have to grieve for their children. For me, I embrace it, I remember the anniversaries and birthdays, I wrap myself in a blanket of happy memories and in doing so, I move to a place of thankfulness where I celebrate their memory always.

Now I just feel incredibly lucky to have shared a life with Maggie Rose, she was an exceptional person and I learned more valuable life lessons from her than anyone might have expected. Especially, after Maggie I disabused myself of the notion of having expections of who my children will be, what they will do. I have faith in them that they will find themselves, and I will be the support beneath their feet and the encouragement they need to be whoever they want to be. Make all choices with LOVE and persevere.

Chemotherapy #20

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I’m not sure if I’ve ever felt so good going into a chemotherapy day.  After a lovely 4-day weekend, plus travel that broadens the mind, happy digestion, and almost-normal elimination (the polite word for it), I woke up at 6:30am and had until 7:45am to shower, assemble my chemo bag, and get to my lab appointment.

What do I keep in my chemo bag?  It doubles as a go bag for ambulance rides to the emergency department, when things occasionally take a turn for the worse so it has some items that will help me in the long-term.

First, I have two sets of headphones: some Raycon earbuds for using in the waiting areas so I don’t look quite so dorky, and my JBL noise-cancelling headphones for when I’m in the infusion room listening to my constantly-evolving Chemotherapy Playlist. I have my tablet so I can write, browse the web, or play puzzle games like sudoku.  On long stays I bring my Dell laptop and its power adapter, but the adapter is made of tungsten I think, and it actually weighs about 16 pounds where the laptop is only like a pound and a half.  I keep a graphene USB charger which is awfully heavy and I don’t often need it because there are usually plugs nearby except in waiting rooms, but on long hospital stays it comes in handy.  I have ginger candies for nausea, and I used to have Dove dark chocolate squares except that in the summer they all melted so I never replaced them. I have my Kuru Toga mechanical pencil and a notebook, should the tablet fail or maybe in case I was inspired to draw, though the word draw here means to make stick figures on paper that even a preschooler would look down their nose at. I have my IV pump for the 46-hour 5-fluouroracil infusion. I have a powerful little UV penlight so I can check the cleanliness of things, since I might be a little bit germophobic and I don’t like filth.  I have a micro-fiber cloth for cleaning things but usually I end up blowing my nose with it. I realize I never really owned a proper handkerchief. I have a MagicEraser too, for cleaning tough filth.  I carry extra Zofran for nausea, imodium for diarrhea, and colace for when you want diarrhea, haha. I have a little box with magnetic pressure point bracelets for nausea, but haven’t really used them yet.  I think like flying in Peter Pan, you have to know that it will work ahead of time.  I have a pair of reading glasses.  For some reason I have a jeweler’s screwdriver set, I don’t really go anywhere without it.  I have a toothbrush, toothpaste, and flossers. I have a tube of Nuun tablets in case water gets too boring, or in case throwing up causes me to need electrolytes in a hurry. I have a couple of USB flash drives, including a Windows 10 install drive for some reason. It is best to be prepared: I figure maybe an MRI goes south and I need to reinstall the OS to get it running.  Though I can tell you, I would never get into an MRI that ran Windows.  I have a sleep mask that comes in handy at times. I have a sort of floppy frisbee sort of thing in a small round case that can be used as a fan when it is popped open. I have a digital voice recorder in case I think of something poignant to say. I have a nail kit and cuticle pusher. I have an HDMI cable and an ethernet cable, because you never know when you’ll need them.  I have some gauze, band-aids, and alcohol lens-cleaners.  That’s about all I can recall or bore you with at the moment.  But the point of this is that the chemo bag weighs an actual shit-ton and by the end of chemo day, it feels like I’m dragging Stonehenge home with me.

But I digress.  We got to the cancer center at 7:48 due to difficulties getting my companion to come out to the car. I checked in for my 7:45 lab appointment and was given a pager.  There was a very, very, very long wait that ate into my oncologist appointment at 8:45am.  I think it was 9:00am by the time the pager went off, despite me sitting for 72 minutes under an electronic sign saying the wait time for a port nurse was 0 minutes.  When the pager went off, I went into the lab, someone took my pager, and about six different people asked my name and looked confused when I told it to them.  Finally someone looked me up on the computer and realized I needed to be in the basement radiation clinic, where some overflow nurses were helping access ports.  Someone walked me down there, where I was met by nurse J. who took me into a relatively swanky examination room and accessed my port.  We had a nice discussion about my Freestyle Libre glucose monitor, and then about the nurse’s husband who was diagnosed with diabetes and wasn’t taking it seriously enough.  You actually learn so much about managing diabetes with the Freestyle Libre, because you can see that not just the types of food you eat, but the portion sizes, have a huge effect on your blood glucose.

After taking several vials of blood for my CEA, CBC, and CMP tests, I was let go to visit my oncologist’s PA.  This wait time was short and tolerable, and I was weighed at 201.2 lbs, had a nice low blood pressure, and was taken to an examination room.  The PA came in and we discussed the last chemo cycle.  I talked about noticeable side effects this time.  I had like a week-long painful mouth sore started by my inadvertently biting my cheek, that almost entirely healed in the last couple days of the cycle.  On the bad weeks, it seems like no wounds ever heal or improve until the last 4 of 5 days of the cycle, then they heal up just in time for the next round.  I complimented the PA on her imodium regimen, because it saved me like 95% of the pain and frustration of going to the bathroom.  I had a couple concerns, for one I feel like I have puffiness in my armpit and she did an exam of the lymph nodes there and was satisfied there was nothing to worry about.  Second, one of my surgical incisions is still packed with a hard dermabond scab, where nearly all the rest have fallen off and are now good, sealed, healing skin.  She checked the stitches on my HAI pump incision and removed them.  Then we talked about my lab work.

My liver numbers have gone back to a healthy range in the 2 weeks I had off from the HAI flloxuridine chemo… always a good thing.  My CEA levels are down to 13.1, where they were 19.2 on 11/1 and 70.6 on 7/19.  This is encouraging because lowering CEA levels may mean the tumor is responding well to the chemotherapy regimen.  My red blood cell count and hemoglobin have improved a little, still under the normal range but tolerable.

Then I was sent up to the infusion clinic appointment, which by now I was about an hour late for.  As soon as the hospital’s Panera Bread shop started serving lunch at 10:30, my wife brought me tomato soup and we went out on the balcony to enjoy it.  It was a beautifully sunny day, and even though it was a tiny bit chilly outside, the warming sun overcame it perfectly.

Enjoying the balcony at the Cancer Center

Unfortunately we enjoyed the balcony for about two hours before we were given an infusion room.  It’s more complicated and time-consuming for me than it was before the last surgery, because now I need an infusion room with a bed so that they can raise me up, flatten me out, and stick a big needle in my HAI pump.  I like having the bed because I can nap very comfortably and listen to music.

We were led to the infusion room, where nurse H. gave me the pre-meds of 12mg dexamethasone and 8mg Zofran, plus an IV dose of atropine which makes me feel sort of light-headed and makes the lights too bright, and after all is done, I have to walk home all gangly like a baby giraffe.  But the atropine is amazing at reducing the spasm/cramps that occur about half way through the irinotecan.

After a half hour of waiting for the pre-meds to take effect, the nurse started the irinotecan.  After about an hour of infusion I started getting hit with wave after wave of nausea.  It was the worst I’ve had up until now, but I didn’t throw up.  I was so tuned into breathing and trying to mentally overcome it that I forgot my ginger candies and magnetic bracelets.  My wife pressed on my pressure points which seemed to help.

Then the nurse came in to access the HAI pump reservoir using a kit with a big needle.  A second nurse came in also to learn how to do this procedure.  After a good scrubbing with chlorhexidine, nurse H. demonstrated how to stick an enormous needle into my belly in just the right spot.  She sort of complimented me on not having a lot of fat over the HAI pump, which makes it super easy to find the lumen and stick a needle in it.  The procedure isn’t terribly painful, definitely less bad than an IV insertion but a little more noticeable than a port access needle because when pressing into the HAI pump, the whole pump is pushing down into my abdomen which is a bit uncomfortable.

Once accessed, the attached syringe spontaneously fills up with the saline that was in the pump, and the line gets clamped off, the liquid amount is measured to determine flow rate, and then the syringe is discarded.  Then comes a sterile saline flush, where more than 5ml of saline is injected in, then allowed to be pushed back out by the action of the pump. Then comes the enormous 50ml syringe of floxuridine, which has to be injected 5ml at a time, 1ml allowed to flow back out, then 6 ml, then 1 ml allowed to flow back out, and this is continued until all the floxuridine is injected.  The needle is painlessly removed and the HAI pump is ready to go.

Next when the irinotecan was done, nurse H. noticed my nausea and discomfort and offered compazine, but I felt like I had a tolerable amount of nausea and opted to put up with it.  So the nurse took my electronic IV infuser, changed its batteries and hooked up the 5-fluororacil to my port line.  After starting the pump and observing it for a short time, we were let go. 

It was about 4:30pm by now… a very long day at the chemo clinic.  Normally if you arrive at 7:45 you can count on being out by 1pm but this was a longer day than usual.

Sleeping was tough.  I went to bed early, like around 7pm, and took 5mg of melatonin which usually helps.  I had about 30 minutes of sleep before I had to wake and take my evening medicines.  Then it took me more than an hour to fall asleep again, I slept for another hour and woke up to roll over and couldn’t get back to sleep.  I came downstairs and finished my Thanksgiving blog entry, which made me feel tired again so I went to bed and eventually fell asleep, until about 3am when my IV pump set off a loud alarm claiming something about being unattended.  I wondered briefly if it was looking for nearby brainwaves but wasn’t finding any?  I got the thing working again, took that Zofran for the nausea that was getting intense, and went to the kitchen for some Kefir, which seemed to help the nausea, though it could have just been the Zofran.  I came back to bed and stared at the ceiling for a long time before my eyes got heavy and I slept again, this time until 6am, and my body told me this was the end of the line.  Please exit the sleep train at this time.

I’ve had a lot more nausea on this 2nd double-whammy chemo than any time before.  I’ve had my emesis bag handy at all times, and sometimes I’m just curled up breathing through it.  I tried a ginger candy at about 10am and it seemed to help.

Wednesday I went into the office.  The steroids and imodium had me feeling pretty normal, and I like working in the office a lot better than working from home.  It’s a beautiful environment, you can walk around a gorgeous campus to take a break, and there is a cafeteria on the ground floor so you don’t have to make your own lunch. 

Only on this Wednesday I had lunch with my lunch bunch as I call them, friends that have been meeting nearly every week for more than 12 years.  I was quite hungry and had a bowl of lentil soup and kofta kebabs.  Lentil soup is sort of a magic elixir when my stomach is upset, I didn’t have any kind of nausea again until about 5:30pm.  I came home and had some dinner and once my stomach had something to do, I felt better.  No more Zofran as of yet!

I woke up early on Thursday morning, sort of excited that it’s chemo takedown day where I get disconnected from the IV pump and get my port flushed and de-accessed at about 1:40pm.  I’m not sure why this is such a difficult thing to arrange, but it is what it is.  In the used-to-be times, the cancer center would notify a home nursing service to come and do the chemo take-down.  I love the nursing service because most of the nurses they send have had cancer and chemo before, and they give great advice and encouragement.  They generally contact me the day before via text message or call to my cell phone, and firm up the time.  If they don’t, I usually contact them and find out there’s some snafu like the Cancer Center scheduled them on the wrong day or not at all, but we get it worked out.  Last night I contacted the nursing service, who had no idea I needed a takedown and scheduled to send me nurse John… this guy is the best, very professional, asks lots of questions to make sure you’re tolerating the chemo okay, and gives great advice.  It’s almost like a visit to the oncologist. But then I got home and my wife told me the Cancer Center’s home health team called and set up a take-down at 1:40pm with nurse J. so I had to contact the other folks and cancel John, since if both get sent the nursing group might not get paid.  It would be helpful for me to know ahead of time which takedown provider will be used, for times like the last round where nobody showed up at all.

So it’s Thursday December 1st!  I never could get the hang of Thursdays.  But this one was good so far, I woke up with no nausea and actually ravenously hungry, so feeling the energy of the steroids, I put a steak on the cast iron to feed myself and the 3 kids.  It was about 24 ounces so I supplemented with some Smithfield breakfast sausage, which I thought I shouldn’t eat because of nitrites, but this brand of breakfast sausage has none!!!!  Then I thought what the hell, let’s go for the Full Monty.  And no, despite the amazing favorite movie of the same title, I did not cook in the nude while dancing to Abba.  I mean that we had the General Montgomery English Breakfast!  Steak, sausage, mash with gravy, tomatoes, beans, and mushrooms.  I skipped the toast and eggs, this is a big breakfast as is and on the steroids I have to be more careful with carbs or my blood sugars skyrocket.  I made plates for the kids too, who were wondering if it was Christmas already.

The Full Monty

On Thursday afternoon at precisely 1:40pm, the Cancer Center home care nurse arrived and performed the chemo takedown.  The timing was so good that a few minutes after he arrived, my IV unit started beeping to notify us that the infusion was done.  It’s always an amazing feeling to be off the infusion.  Even better is being able to take a shower after waiting about an hour for the port needle stick to close up.  Clean and tidy, I went into the office and worked there for the afternoon.  The office is so quiet and peaceful, it is much better to work there.  Also my secret lab/home office is chilly these days so I prefer the warmth of the office.

A little note on how I was feeling:  amazing!  On Thursday I felt better than I had in years, maybe it was due to the dexamethasone steroids, but I felt unusually good on Wednesday, Thursday, and Friday.  On Friday, I attended an office luncheon where I got to see about 50 people from my division and many I had not seen in years!  I had filet mignon and roasted vegetables, and the food was incredible.  I also had an unusually good appetite for bad-chemo-week.  Normally I lose 4-5 pounds not eating in the bad week, then gain them back again in the good week.  Though I weighed 200.2 lbs on Friday, meaning I lost about 2 lbs, this seems to be an improvement.

After the banquet I went to Baker’s Dozen doughnuts and got a dozen fancy donuts for the family.  I had one of the doughnuts and it didn’t even freak out my blood sugar since I’d had steak and vegetables for lunch and eggs/protein for breakfast.  My wife and I went out for Indian food for dinner Friday at one of our favorite restaurants, and she tried several foods and let me know which ones were too spicy, and I avoided them.  I so love spicy food, but the FOLFIRI chemotherapy seems to damage my GI tract badly enough that almost any spice causes food to go right through me in a pretty dramatic way.  That improves somewhat in the good week, and I can actually have mild salsa and chips.  Almost any cayenne pepper or dried red pepper is torture though, to my mouth and digestion.

I started feeling the steroid crash on my drive home on Friday, I was almost falling asleep at the wheel.  So after our Indian dinner I crawled into bed and slept like a rock until Saturday morning, maybe 10 hours straight.  Saturday we went grocery shopping, and then had lunch at the Armadillo Grill in Carrboro.  I went to a birthday party gathering that afternoon and stayed late to help clean up.  I was feeling pretty good and stayed up a bit late in the recliner fooling around on the computer attached to my 4K TV, kind of a luxurious way to browse Facebook, catch a bit of Rimworld, and update the blog.

About 5am I woke up with a sore throat, so I went downstairs and refilled my water, had about 8 ounces, and blew my nose.  My wife says it’s been more runny this week than normal, she noted it to the oncologist on Tuesday.  By my memory it’s been quite runny ever since restarting chemotherapy, tinged with a little pink blood when I blow my nose.  My temperature was 97.7, blood pressure 125/73, 82 pulse, 96% SpO2. I kept worrying about the sore throat and decided to burn one of the COVID tests we have lying around. We’ve used a bunch on everyone else, and I haven’t taken one yet. So I set it up, stuck a swab in my nose, and dripped 3 drops onto the test strip… within minutes I got a POSITIVE result. That’s not very positive, but… yikes. I have COVID.

On Sunday I called Cancer Center’s nurse line and it informed me that they were closed until Monday at 8:00am. My wife got the idea of calling the hospital’s main number and got the operator to page the doctor on call for my Oncologist’s office. I got a callback from Doctor J., who asked about my symptoms, temperature, O2 sats, and blood pressure. She told me if my temperature exceeded 100.4 during the night or my O2 sats went below 92% or 90%, to go to the urgent care or emergency department. She gave me the phone number for the hospital’s special COVID clinic, and told me to call them at 8am Monday morning.

I had simply the most awful night’s rest I think I’ve ever had. The night went like this: I fell asleep quite easily, then had stress anxiety dreams about hospital billings and insurance, or about mysterious columns of numbers that needed to be checked and double-checked or the sky might fall, or any number of ridiculous situations with terrible consequences. Then I would wake up after seemingly hours of this nightmare, only to find the clock had only advanced by a minute or two. I must have had 500 of these dreams back-to-back and when the sun came up, I was exhausted. This led to me falling asleep all day long, in the middle of phone conversations, while logging into the Walgreens website or the hospital MyChart application — I would wake up and find I was automatically logged out due to inactivity (sleeping).

I also have had a constant headache, body aches, low grade fevers at night, and progressively worsening dry cough. So on Monday at about 8am I called the COVID clinic, only to find out that it now provides vaccinations and tests, but no longer does monoclonal antibodies or infusions. There is a specialist that I can get my oncologist to refer me to, that can work with my team to craft a care plan. So I contacted my oncology team to inform them of my COVID diagnosis. They told me there was this great COVID clinic I could call, so I told them what was going on with the COVID clinic and how I needed a referral to their COVID expert, and the oncology team got right on it.

An hour or so later I got a phone call from Doctor G., the specialist, and could tell immediately from her questions that she not only had read my entire chart (which at this point probably looks like a Michener novel), but she knew all my prescriptions and had done a good deal of preparation. She talked to me for nearly an hour about all the options, which ones still were effective, which ones were FDA approved or nearly-FDA-approved, the side effects of each, and interactions with my chemo and expansive list of prescriptions.

She recommended Molnupiravir because Paxlovid shouldn’t be used with my blood thinner Eliquist (which I am taking to dissolve a pulmonary embolism). She sent the prescription to a nearby Walgreens pharmacy since they seemed to have it in stock. I started taking it on Monday evening, and I don’t know whether it was immediately effective or if I am starting to get better, but I slept much better on Monday night. Except that I had a really vivid nightmare that all the dishes in my sink were overflowing and dropping soda cans, cat food cans, and plates onto the floor, so may have dreamed that I filled the dishwasher at about 2am. On Tuesday my wife asked me if I did the dishes in the middle of the night, so I guess it actually happened. I’m honestly surprised I stayed awake long enough to finish something.

Tuesday wasn’t much better than Monday, I still fall asleep in the middle of things, but I have a bit more attention span. I feel like I have less runny nose, but my coughing is getting worse, but O2 sats are still better than 93% so I am optimistic. I am actually able to update this blog because my wife gave me a wonderful head massage which canceled the headache almost immediately, and I feel actually able to think clearly again. I hate headaches!!!

Tuesday night, the headache was making me cross and simply ruining my life, it is the worst symptom. My wife risked her health to give me a forehead/orbits massage that lifted the headache like a blanket, folded it up, and threw it in a corner. I was in bliss just having a respite from the headache, it was marvelous. My brain was finally working again!!! I was able to make some social media and blog updates. A couple hours later I could feel it on the edge of returning but I went to sleep and it never came back.

I also had solid food for dinner instead of days of soup, and I savored being able to chew something, except that I have some bad chemo mouth sores that make anything acidic very painful to eat. I weighed myself at 195 lbs, so I’m about 10 pounds less than I should be, I fear getting that anorexia mark put on my record again at the next chemo session.

Wednesday morning I woke up feeling much better. My O2 sats were 97+ instead of 94+, I am coughing less, and the muscle aches left me sometime in the night. The antivirals were totally doing their job, though at the expense of some tummy aches and wet poops, but that’s what imodium is for. Since my brain is back in play I worked at home from my bed using my laptop. Having one screen only is a pain, but I manage OK. I’m hoping we’re out of the woods on this COVID thing. I am super thankful for the vaccines, without which your chances of going into a hospital increase by more than 10.5x. I’m sure my immune system is pretty wrecked after all the chemotherapy, but I am thankful that it’s still putting up a good fight.

On Thursday, my oldest and middle children both came down with symptoms and tested positive for COVID despite my masking when outside of the bedroom. I can only assume that the new strains are much, much more airborne and are circulating through our HVAC system. I tried to keep the bathroom clean with chorhexidine wipes but this probably didn’t work either.

On Friday, the children were already starting to feel better and by the next day, there was very little trace of the virus. Both of them had been boosted in the last few weeks, so clearly that protection gave them miraculous immunity to the virus.

On Saturday I was feeling exceptionally good, no fatigue at all, and I wanted to take advantage of the remaining days of my “good week” so I embarked on a project to install my retractable electrical cord reel in my workshop. I had purchased it before the cancer and never felt good enough to take it on, since it involved moving the band saw out of the way, drilling through studs, mounting a heavy object above my head with lag bolts, and all of this was just… well, over my head for a long time. Technically with the HAI pump I should avoid lifting really heavy objects so that my core muscles don’t displace anything important, so I made sure everything was a reasonable lift.

Once installed, I took my electric blower out in the yard and blew leaves, then vacuumed them up to the limit of the retractable cord’s reach. It was quite a chore, there were so many leaves!!! So after that I had to have a nap, I was quite drained. Once I was more rested, I went with my wife for a nice little hike on the Eno river. I call it a hike, but it was really more like two moaning invalids crawling up and down stairs trying to recall their youth when they were perfectly ambulatory. People were staring at us and everything. Cancer patient and lady with bad knees decide to go bouldering in the woods without supervision. That will end well!

On Sunday I took on another project, this one to install a retractable air compressor hose in my garage so I’m not always tripping over air hoses and spending hours coiling them back up. The hose reel is very heavy, so I made a template from its mounting holes and realized it can’t just be put on a stud, so I framed a box between two wall studs like you would a window, with two additional studs taking the weight, and I can mount the thing onto horizontal studs with a big dado for extra support, all secured with lag bolts. I think I could hang one of the Smart cars on this frame. I didn’t finish the project this weekend though, the air hose reel is way too heavy for me to lift, so I’m going to get some of my three strong kids to do the heavy lifting later on, while I mount the thing. I would say next weekend but that’s the bad week from chemo #21, and therefore not compatible with accomplishing much of anything. We might get lucky and see it finished in 2023!

On Monday morning I tested negative for COVID! I messaged my oncology team about whether we should proceed or reschedule, and they said I am far enough out that it’s okay to come. But Jen can’t come with me, with active COVID, my youngest son who isn’t infected will be at school all day, my older children are infected with COVID, and I just learned that my backup plan, lunch bunch friend L. also has COVID. I’m thinking maybe one of my other lunch bunch buddies, though I might be taxing them too much asking for a whole day hospital hangout. The oncology team said it would be okay for me to come alone this time. But the downside is, when I am in the office feeling great I barely can remember what all my issues were in the last cycle. I’ll just reference my blog, which is sort of my external data backup lately.

This brings us up to the edge of Chemotherapy #21, so follow along on the next post!

Thanksgiving

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I realized in a moment of downtime this weekend, that there is now a part of me that is IMMORTAL.  Of course that part of me is a 2cm gaggle of prehistoric party-animal cancer cells that want to binge on SweetTarts and spawn furiously, never limited by the mechanisms of ordinary cell death.

It occurs to me that whenever we (or our cancer cells), get too greedy we forget that our survival is intimately linked with other resources, organisms, and cells.  The immortal cancer forgets that in its zeal to spread and survive, if it kills its host, even its small measure of immortality can come to an end.

It’s been about five or six years now that we’ve been living with each other. Granted, the cancer was a stowaway and most of that time I never appreciated it was there. Now I’m not being a very good roommate with the surgeries and chemotherapy to evict the cancer from my body.  But the cancer has gotten too aggressive: selfish, single-celled organisms too unwilling to cooperate in the multi-cellular organism that is me.

And yet, I find myself strangely thankful for the cancer inside me and all it has given me.  Even though this has been a difficult journey, the cancer has revealed all the resources available to me like prayers, family support and love, the love of friends and coworkers, my wonderful employer, incredible doctors, nurses, and surgeons… it humbles me and brings tears to my eyes how deeply people care for me.

You kind of go through your life always wondering if anyone even likes you, and then something like this happens… and people offer all kinds of love, encouragement and compliments.  I haven’t been the most perfect person or the bestest friend… but I must have done something right, or else everyone else out there is so crappy that I look good by comparison.  Either way I am thankful for the love.

The Kanienkehaka have a Thanksgiving Address, Kanonhweratonhtshera, and the word essentially means “words that are formed from the love in your heart and mind.”  My thoughts and my feelings, together they form words of thankfulness:  I am thankful for all of you, my friends and family, all my caregivers, the medicine that makes us whole in body and spirit, this beautiful Earth, and the creator who gave us all these blessings.  Thank you.

I pray that even in these chaotic and troublesome times, we all put our minds together and become good stewards of the world for our children and grandchildren and all the generations to come.  I pray that we look past our differences and be more tolerant of each other, that we listen more and offer real compromise.  The world isn’t like a cancer battle. Though yes, people can be selfish and singular, it doesn’t mean the people we disagree with need to be destroyed.

Road Trippin’

I was lucky to feel good the week of Thanksgiving, I made [American] Indian Wedding Hash and our family celebrated dinner with my in-laws, Grandpa J. and Grandma K.  Everyone in my household was present, which is rare and hard to orchestrate with parents and children working jobs and attending school with all different schedules. It was wonderful to relax together and share our minds and hearts.

On Thanksgiving we formed a sort of last-minute plan for me to take my oldest and youngest children to the beach, and we left Friday morning for Ocean Isle Beach.  In the picture above, we stopped at a BP station and convenience store where my oldest son bought a 3-pack of raspberry Zingers and shared with me… these are a few of my favorite things!

My sister and her husband have a place at Ocean Isle Beach and it’s super relaxing to unplug and visit, even if it is only for an overnight stay.  We had a nice seafood dinner at Ella’s in Calabash, did some shopping in Callahan’s souvenir shops there, and then relaxed at the beach house until after midnight.  I slept very well that night, and it seems my long-suffering gastrointestinal tract responds very well to super-fresh seafood: I felt quite good in the days leading up to the next chemotherapy infusions.

We woke up Saturday, had a big breakfast and walked up and down the beach for a while. Then we cleaned up after ourselves in the beach house and made the 45-minute trek down to Myrtle Beach.  As a huge Simpsons fan, I had to visit the Kwik-E-Mart at Broadway at the Beach, where we treated ourselves to some Squishees, then went into town.

The Simpsons’ Kwik-E-Mart in Myrtle Beach

I wanted the kids to experience the Gay Dolphin, which is an unbelievable maze of souvenirs. We walked around exploring its various levels for a while. It’s an eclectic mix of weird stuff. T-Shirts on one level, jewelry on another, tiki hut supplies, beach house decor, personalized keychains, a Zoltar booth, a signed Elvis Guitar for $3000 next to movie posters, fridge magnets, knives, seashells, and shark teeth… to mention only a few of the things for sale.

Dolphins in the spiral stairway
I even found Bigfoot!

Then we took a ride on the Sky Wheel to see the beach and ocean from a higher vantage point. I’d often wished to try out the Sky Wheel on previous trips to Myrtle Beach, but never quite found the right time and company. It was a fun trip, and there were a lot more turns on the wheel than I expected. You get to go slowly around one time while passengers get loaded in a balanced way into the cars, then you get about 6 rotations before the unloading begins. I am ever so slightly wigged-out by heights, but it wasn’t too terrible.

A weird selfie by the Sky Wheel, with chemo hair in full disarray.

It was a nice relaxing day, that we finished off with wings for dinner and drove home so that we still had Sunday free to relax before work and school.

I’m grateful for the long weekend, and for a couple days of travel to change my point of view. I still get tired somewhat easily these days, and having walked 16,000 steps I did crash into sleep very readily when I got home. But my heart and my mind are more settled and relaxed for the upcoming week. Feeling very thankful right now!

Chemotherapy #19

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Infusion #18, with a smile

Let’s start by talking about the end of chemotherapy #18 a little. The double-whammy chemotherapy was tough. I avoided touching my head because I was losing 20-30 hairs each time I did. The Friday evening and Saturday after chemo #18, I don’t even remember because I slept through most of it, and part of Sunday too. Mostly a waste of a weekend. Coming off the steroids is terrible because for Wednesday, and Thursday the daily dose of 4mg dexamethasone keeps you artificially pumped and Friday when you would normally take the steroid, you begin the process of post-steroid crashing.

The only nice thing about losing the steroids is that my blood sugars are returning from low earth orbit back into the 90s and 100s, and I can have a little bit of ice cream and a few bonus carbohydrates that would be insane and suicidal on the dexamethasone. I would do almost anything for ice cream, I only made it to adulthood because there weren’t any white panel vans offering it when I was a kid.

I have to give full credit to the oncology PA, who kindly gave me a regimen of imodium doses, 2 each morning on Wednesday, Thursday, and 1 on Friday, so that I would have solid poops for cycle 18. When you make poopy 3 times a day versus 8 or 9, things are so much more tolerable. This really felt like the best thing that ever happened to me, and I’m definitely putting her in my will after this. I think now, that I really can do this!

The good week (the week between chemo infusions), really started on Tuesday evening and it was a great week. I felt like my core muscles were stronger and less achy. I did a lot of cleaning to get myself in shape for returning to work the next week. I still can’t lift more than 10 lbs but I did sweeping, cleaning the kitchen, light cleaning of the workshop, garage, and the secret lab. I cleared off the kitchen table (it has since gotten cluttered again). I found the sink waiting for me, taunting me, daring me to wash the dishes.

Oh, the humanity!

Tuesday was also election day! I voted early but also woke up at 5am to see the incredible lunar eclipse. A snap from my phone can’t do it justice. Stand really far back from your screen and it will seem sorta pretty:

Lunar Eclipse

These last couple of weeks on leave from work were making me stir-crazy. I miss going to the office and working with the most incredible team of smart, motivated people. The rest of the week I passed the time ministering to friends on the phone and getting my return-to-work authorization paperwork filled out by my surgeon. They FAXed the paperwork to my workplace and I got a phone call from HR confirming I should come back to work on November 14. YAY!

By Friday I was feeling quite full of energy and decided to drive to Virginia, take my friend Robert out to a delicious birthday dinner at the Roosevelt in Richmond. I don’t think I’ve ever had a bad meal there, it is always an incredible treat.

After dinner I drove the rest of the way up to DC and visit my sister and parents. My aunt and cousin had driven down from New York to visit them, and I was excited to see them after soooooooooooo very long. They are some of my favorite people.

The first 2.5 hours of driving in my little Brabus Smart car was fun, I rocked out to tunes on the sweet stereo system, and then had the dinner break with my friend. Driving the next hour was still pretty fun, but the last half hour I was tapped out and quite a lot more tired than I care to admit. I arrived at 10pm and visited my parents’ house for an hour or so, seeing my mom, aunt, and cousin. Then I went to my sister’s house where she had prepared the guest room for me… and it was heavenly. The house was so quiet and peaceful, the bed was warm and comfy, and I fell asleep in about ten seconds, no joke. I woke up absolutely refreshed about 8 or 9 hours later, it was truly the best night’s sleep I have had in longer than I can remember.

The next day we had a nice lunch with my mom’s cousin C. and her two children, at this little restaurant in Tyson’s Corner called Flower Child. It had so many great vegetarian and vegan options! And of course animal proteins for everyone else. I am not vegetarian by the way, but there are many days in the chemo cycle where vegetarian food appeals to me a lot more than steak and potatoes.

I had a vegetarian shakshuka that was a tiny bit too spicy for me with the FOLFIRI issues, but I enjoyed it so very much. It was wonderful meeting our cousins!

Shakshuka at Flower Child

We got to visit the rest of the day, had a dinner of Mom’s wonderful corn chowder which made my tummy very happy, and I spent another perfect sleepy night in my sister’s guest room. We woke up early in the morning and I joined my Dad and sister for their usual Sunday breakfast. It was good to see my father so relaxed and he seemed very happy to spend time with his kids.

About mid-day Sunday I headed home, but took a quick detour to Williamsburg to visit dear friends and get some dressing from the Cheese Shop. I had dinner at Second Street Restaurant & Tavern then caught the Jamestown-Scotland Ferry so that I could make a more direct route home via route 58. Sadly, that wasn’t really faster due to farm traffic and random slow drivers on two lane roads, but I enjoyed the relaxing drive nonetheless, and it was lovely to crash in my own bed at home.

On Monday I went back to work!!! I decided to go into the office since I was feeling quite well, and was a little cowed by the 2,000 emails in my Outlook box. It was nice to have someone else make me food in the downstairs cafeteria, and to see some of my coworkers again! What a treat! I admit people dropped by and talked to me a lot more than on a usual day, so the first day back wasn’t my most productive ever, but it was a fantastic return to the office.

On Tuesday the 15th I had to be at the cancer center unusually early — at 7:45am. I started the day with an imodium just to avoid the liquidy stools that irinotecan always causes during the infusion.

I had my port accessed at the lab, lots of blood got drawn including three vials for the Signatera test, a cholesterol test, HgbA1c, CBC, and CMP tests. The results were all not too terrible. My cholesterol was 117 total, 45 LDL, 50 HDL, and 111 Triglycerides. My A1C was 6.0, pretty good, and my HDL/Trig ratio was 2.2 (this is really the most important figure in your cholesterol test… you want this ratio under 2 for acceptable insulin resistance, higher ratios show a much higher incidence of heart disease). My liver enzymes were a bit high but not terrible, and my hemoglobin and platelets are below normal but as expected during chemo. So based on these results we decided to do the next round of chemotherapy.

We went to the infusion room waiting area and my wife went and got some Panera tomato soup and mac and cheese for my lunch, since I had been fasting for 12 hours for the cholesterol test, I was ravenously hungry. We got an infusion room reasonably quickly and I received my 12mg dexamethasone and 8mg zofran, waited 30 minutes, had some atropine, then the irinotecan infusion. While that was going on, my favorite nurse O. trained another nurse to access the HAI pump’s lumen. He did a great job, I barely felt the stick and he accessed the reservoir quickly. The floxuridine chemo flowed up into the syringe, then the reservoir was filled with saline, then flushed out, then filled with saline/heparin so that I would have a 2 week break from the directed liver chemo. Nurse O. was nice enough to snap a photo of the needle for me, it’s pretty cool.

For those who aren’t faint of heart and you find medical stuff fascinating, expand below to see the needle:

Show Carnage

This infusion, I didn’t have the stomach cramps/spasms so badly which was nice. I also didn’t have to run to the toilet halfway through, maybe this was due to the morning’s imodium. They unplugged the irinotecan when it was finished and hooked up my 46-hour 5-fluororacil infusion pack, scheduled me for takedown at 11:30am Thursday, and cut me loose. We left the infusion clinic around 1pm — a new early record!

Thursday’s chemo take-down was kind of SNAFU’d. Normally I get a call from the home healthcare nurses sometime Wednesday confirming the time and I didn’t get a call. I left a message asking about it, then also called and talked to a human who said the scheduling person was out at the moment, and they would get in touch. I waited Thursday for someone to show up and it didn’t happen so I went out to lunch instead, clamping my line when the pump alarm went off and shutting the pump down. Finally I got notification that the take-down would be Friday at noon (!) which isn’t right, so I notified them it should be Thursday. Apparently the nursing company got the wrong date from the cancer center. They sent a nurse at 5pm to do the take-down and flush my port with saline and heparin. I was super happy to be free and unplugged! It’s a pain lugging the infusion pump around with you all day, and sleeping with it at night.

As for side effects, Wednesday and Thursday’s 2 imodiums really did the trick, bringing me down to 3 tolerable BMs a day that weren’t too painful to deal with, though irinotecan always burns like hot peppers for 3-4 days. The steroids also kept me energetic enough that I even went into the office to work, since my lab at home was quite chilly at 61 degrees. Friday late, I was feeling dog-tired when the steroids wore off, and slept in Saturday as long as I could. Saturday I slept a lot during the day, falling asleep several times in the recliner downstairs while I tried to play RimWorld on the computer. I woke up several times to find all hell had broken loose in my space town while I was sleeping. Sometimes my oldest son comes and checks my pulse to make sure I’m not dead.

It’s all a bit fuzzy now. I got to play some Thanksgiving pre-play pool league matches this week and won 8-ball against a 5 (I am a 4), and lost 9-ball to a very good 4 (I am also a 4). I think I did well for not playing pool matches for more than 2 months.

So far, as of Monday evening, I’m feeling okay! Without the double-whammy chemo there are fewer side effects, the hair loss isn’t so bad if I don’t brush or comb my hair, poops are tolerable this time, and starting Monday I didn’t need naps during the day! I’m planning to commute and work in the office this week, and for Thursday I’m even going to make some Indian Wedding Hash to contribute to the dinner at my in-laws’ house. I am looking forward to this good week so we can get to #20 and the next double-whammy chemo next week.

Chemotherapy #18

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In the cancer center quiet room after the infusions

I was blessed with about five feel-good days before the next chemotherapy treatment. On such days I try to get out and walk 3000 to 6000 steps since I seem to tolerate the chemotherapy better when I haven’t been too sedentary beforehand. These feel-good days are also a time where I can eat almost anything I want with no ill effects, though for some reason I have developed a sort of stomach-turning aversion to fried food since the surgery. My theory is that with no gallbladder my liver has limited ability to produce bile on demand, enough to digest a lot of fat and oil.

The day before the chemo I had lasagna for dinner, one of my favorites. I feel like Garfield, I could eat a whole pan of it before I realized I probably shouldn’t have eaten a whole pan of lasagna. Once or twice a year I make lasagna myself, a northern Italian version inspired by Marcela Hazan’s lasagna with meat sauce. I like to make fresh spinach noodles, and roll them out in my hand-cranked pasta maker. It adds about an hour to the preparation time and makes a bit of a mess, but the quality of the end product is incredible. Those noodles get layered with a Bolognese meat sauce, salsa balsamella (like bechamel sauce) instead of ricotta, loads of mozarella cheese, and baked to perfection. This, unfortunately, was not one of those times where I had the energy to make lasagna from scratch. But eating just about any other lasagna is not settling for second-best. I think all lasagna are like flowers, every species is beautiful and always a treat to behold. I don’t judge, I just enjoy. Though I don’t eat flowers — I only appreciate them visually — and I don’t usually regard lasagna as a thing of stellar beauty, my stomach does most of that assessment. So OK, it’s a bad simile, but you get the idea I think.

Barbeque ribs with cole slaw. Tacos al pastor. Clam chowder. Key lime pie. 3-cheese mac and cheese that I made with cheddar, gouda, and mozzarella (just what I had on hand). These were all my indulgent little treats before the start of this next round. And luckily I was able to gain back the 5 pounds I lost in the previous week, when I was trying not to eat so as not to poop. Probably not a good strategy, but you survive these things however you can.

Also in the last week, my wife and two of my kids came down with some kind of terrible respiratory cold that probably wasn’t coronavirus, as we tested them all for COVID every 2 days. The youngest was several days ahead of the others. All were confined to their rooms and wore masks in the rest of the house to afford me some protection. I had to sleep in the recliner for several nights in a row, and it occurred to me that our new sofa would be more comfortable and it was, except for the cats fighting violently over who would lay claim to the Throne of Human for the evening. Also my children talk to each other and with friends until about 4am at top volume, which is a lot easier to sleep through when you can close a bedroom door. Then at 4am every morning my wife wakes up and does a morning ritual that involves grinding coffee, whistling a tea kettle, and unloading or loading the dishwasher. One day was so full of coughing I could almost see virus droplets hanging in the air like smog, and I was so exhausted from 1.5 hours of sleep in the living room, that I got a hotel room so I could get a full night of sleep. It was like the best vacation ever — quiet, dark, luxurious rest. I slept for 8 hours, had breakfast, and slept for two more.

The lobby had a nice new Brunswick 8-foot pool table, so after loading up my car and before check-out time, I whipped out my two-piece custom-made pool cue and tried some shooting. After a pretty short while it hurt my core muscles, due to leaning over a table so much. I hadn’t realized quite how much leaning over pool actually involves. A nice Israeli man with a very thick accent wanted to play and take some shots, and asked a lot of questions about how to stand. He had played a bit as a child. After a while his teenage son showed up and also wanted to try it out. The father was a very quick learner and had a lot of body discipline, I showed him how to use bottom English to do stop shots and even draw shots, but draw shots were a bit tricky for him, he kept lifting the back of the stick and launching the cue ball over the object ball and over the table. I’ve so been there with the same shot so I’m a patient teacher. One time in a match I got excited, tried to do a stop shot, and launched the cue ball over the 8 ball, scratching straight into the hole and losing the game. The guy got pretty good at stop shots and another couple tricky shots I showed him. His teenage son was a different story though, he was in town for a tennis tournament and by golly, he played pool just like you play tennis. Duck and cover! It was kind of funny, he looked a lot like a Space Invader with his weird wide stance and his waving the cue around like a sword.

Wait, this is a post about chemotherapy, not about my food indulgences, pool, and struggles to get a night of sleep!

So Chemotherapy #18 day began with me sleeping in until about 10am. It was my first night back in my own bed with my hopefully-recovered wife. I slept very well and felt rested when we headed out for the 11:45am lab appointment.

At the lab appointment the port nurse remembered me from months ago and though you can never be happy to have someone back at chemotherapy, she was chatty and encouraging as she accessed the port, drew a few vials of blood for my CEA, CBC, CMP, and LDH levels.

At the oncology appointment afterward, we discussed the troubles with the previous round and they gave me a regimen for using more immodium since it seems I was being a bit too conservative with it. I admit I was avoiding it because it comes in these little blister packs that are made out of dwarf star alloy, and with the peripheral neuropathy in my fingers, I can only get the drug out by smashing it to smithereens with a hammer and licking up the leftover powder on the table. My wife knows some kind of black magic that involves scissors, that extracts the pills whole, so I will try and go with her smarter plan that I have to admit is a little more refined than my Hulk smash method. I also got a prescription for these weird waxy hydrocortisone bullets — okay this is an overshare — but apparently these can help but they aren’t taken like… traditional medicines. <shudder>

I got my lab results and I am losing red blood cells and platelets, we’re below the minimum desired values there. My liver numbers are back in a good range, which was good news, the 2 weeks of saline in the HAI pump were a good rest and my liver seems determined to recover. My CEA (carcinoembryonic antigen) levels have gone down from 70.6 to 19.2, which the oncologists seemed excited about. It shows the cancer growth was significantly halted by the surgery and last round of chemo.

Next I showed them a complication that has arrived in the past few days, where a big chunk of dermabond in the 3-inch HAI pump incision had come off and left a deep hole that was weeping. My surgeon and his team (seriously, 4 people showed up), rushed over to check it out, and since I’m allergic to more Dermabond, they cleaned and sutured it, and covered it with steri-strips. We need to watch it carefully because infections around the HAI pump are no bueno. The surgeon also didn’t want the incision to un-zip from this spot, which sounded super bad. I was totally impressed that the surgeon did the sutures completely painlessly, where I was mentally prepared for suffering, since I’ve never had stitches or sutures while conscious. It was neat and professional.

Though it did spring a leak when I went up to the infusion lab. The nurse taking my blood pressure noticed I had blood all over my shirt, and she checked it out and covered it with gauze. The eliquis blood thinner I’m on for my pulmonary embolism doesn’t take kindly to any kind of clotting action. I have had to shave with an electric razor because if I cut myself shaving it will bleed for half a day.

Then we had a significant wait for an infusion room, so we went out on the balcony in the sun. We weren’t actually in the sun because there was also a crowd on the balcony and the four tables in the sun were all occupied. We sat on a bench in the shade and the temperature was just perfect. Jen got me an avocado grilled cheese sandwich from the cafe on the first floor and I wolfed half of it down before I realized it was really spicy. They had given me the avocado and spicy pimento with bacon sandwich instead, which was nice but the spice made the whole thing go right through me. I love love love spicy food but not since the FOLFIRI chemo, which has made it downright painful, and my GI tract goes into full rebellion when it gets any.

While we were enjoying the fresh air out on the balcony, two women came out and one posed for a photo by the edge of the balcony, and I realized due to the presence of a cowbell that this was the bell-ringing ceremony for a woman ending her chemotherapy regimen. She rang the bell while the nurse filmed it on the phone. And when the ringing stopped, the crowd all erupted into applause. It was special to be in that moment, it brings tears to your eyes to see a significant battle won.

I’ve always chafed a bit when I hear certain phrases like “cancer battle” and I think I avoided using them for a long time. I think I prefer to say “cancer journey,” mostly because I’m not the only one on this path. Besides, cancer isn’t much of a battle, it is more of a full-scale alien invasion and calling it a battle makes it feel like you have some active role in defeating it. No, mounting an opposition to cancer is more of a dark, passive endurance like surviving a siege without starving to death, and hopefully one day emerging into the sunlight… victorious?

Our friend Aggie sent me a nice note with a muggle bingo card, containing terms which are the inadvertently irritating things people say like “think positive,” “this is God’s plan,” “you’re so brave,” “eat lemons,” “drink celery juice,” and “you don’t look sick.” It is funny and gave me a laugh, but after some consideration my opinion is that anything people try to communicate as they contemplate what you are going through, is endearing and uplifting to me, and it touches me that people can overcome the awkwardness of the situation to offer any kind of encouragement at all, which is a kind of miracle in itself.

I will say something about God’s plan though. God’s plan is never for anyone to ever suffer, not for His glory or anyone else’s. Suffering happens as a result of our collective free will, and I find the love and presence of God in all of those windows that open when suffering happens. People reaching out with a good word, sending cards and gifts, hugs and love, prayers, follow-ups… that is the plan. An explosive round of applause for the woman finishing her chemotherapy, surrounded by the joy of complete strangers. These are special moments of God, whether you believe in a deity or not: our truly human capacity for love and compassion are inspiring and transcendental, they leave a permanent mark on the breadth of the universe, as do we all. Live a story of love and compassion. Nothing else really matters.

What also matters a little, is getting an infusion room before fatigue takes you down. After a long wait our pager went off and we were led to a hospital bed in a private infusion room. Being eligible for a bed is very nice for me, but the other infusion rooms have two recliners and it’s more comfortable for my wife to be able to relax also. The rooms with beds are too cramped for a bed and a recliner, so I see her disappointment at spending a few hours sitting on an uncomfortable bench. She quietly sacrifices so much in life to give me comfort and advice through this journey, and to make sure I take the right medicines at the right time.

This round of chemotherapy is a double-whammy like I’ve never endured before: (1) my hepatic artery infusion pump will be filled with the full dose of floxuridine plus 25mg dexamethasone, to be infused over 2 weeks; and (2) I will receive the dose of FOLFIRI: irinotecan and 5-fluouraracil.

The infusion nurse was fun to talk to and full of more great information. She gave me 3 x 4mg dexamethasone pills and 2 x 4mg zofran pills, and we waited for a half hour for those to take effect. She then asked if I wanted to have a dose of atropine before the irinotecan infusion, and I did because it helps with the GI spasms and crampy pain I get during the infusion and a little while afterwards. I learned that atropine dilates your pupils, which might be partly responsible for the angelic chemotherapy pictures my wife posts of me on Facebook. Also it’s probably responsible for what I call the “giraffe walk” after I get infused. When I get on my feet my gait feels clumsy, like I am top-heavy and might topple over.

I tolerated the irinotecan infusion as I normally do… there are little spasms in my GI tract and then “i run to the can” after about 45 minutes. It sure starts working fast on my GI tract! After 90 minutes of infusion they hooked up my 5-fluororacil to infuse over 46 hours at home, and we went home at about 7:30pm in the dark. about 8 hours this time!!

I feel nausea and an unsettled stomach pretty soon after infusion, and for dinner I had leftover fettucine alfredo and mac and cheese, those really settled my stomach nicely. Things that aren’t too acidic tend to work pretty well.

Sleeping that night was rough, I was exhausted but the steroids kept me awake until 3am despite taking 5mg of melatonin, which usually is able to overcome the steroids after a while.

I was resting in my recliner around 2am when our cat Tiga tried to leap from a nearby chair onto my stomach. It’s been a while since he’s attempted that, and he didn’t really even have a clear path to my stomach unless he could curve in the air like those bullet trick shots and… spoiler alert, he couldn’t. He caught the edge of my computer keyboard on a table beside my recliner, and knocked the keyboard and the entire table over, along with my phone, flashlight, USB hub, headphones, pens, and a Perrier bottle. It made quite a racket that brought half the family running.

Eventually I got sleepy and went up to bed. When I’m on the steroids I try not to be in my bed tossing and turning, trying to fall asleep while my wife is trying to get enough sleep to be rested for work the next day.

The next morning, I woke up to a note from my youngest son: the cats knocked over this thing on the piano which in turn knocked your medicine box into the litter box and it scattered some medicine around. I picked up what I could find and put it in the metal cup.

Good luck taking your medicine this morning!!! Yum!!

Chemotherapy #17

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Infusing irinotecan after a 3 month break from chemotherapy

I woke up this morning with a sense of dread; after three months with no chemotherapy, I can’t say I miss it at all. In three months I’ve recovered some of the peripheral neuropathy in my hands: it’s still really bad in my fingertips, but I can feel my palms again, and I can feel things with my palms again. I know I look weird petting things like velour, silk, cats, hair, sawdust, garden soil, toothbrush bristles, but honestly not feeling numbness in your palms again is like waking up from a years-long slumber. Sensation is exhilarating, when you have it again.

Now I can tolerate a tiny amount of spicy food again — granted, I can only take the heat of peppers slightly hotter than black peppercorn, which is basically nothing, but to feel spiciness and not pain, is wonderful. I love spicy food. I miss Szechuan ma la cuisine that makes your nose run. I love hot buffalo wings! I used to eat pickled jalapenos like gummy bears. Now a mere sliver of dried Thai chili can slay me with hours of direct nerve pain. It has improved a tiny bit in three months but not nearly enough.

A bit of an overshare here, but being able to have a normal bowel movement that doesn’t hurt or bleed, one you don’t have to think about or dread beforehand, has been a godsend.

Things are complicated so I will quickly break down how chemotherapy works from now until mid-January:
(1) Chemo via Hepatic Infusion Pump: filled with 100x-power floxuridine chemo delivered directly to my liver via my hepatic artery. 2 weeks ago, the reservoir was filled with a half-dose of this chemo. This week, the reservoir will be filled with sterile saline and heparin which will infuse over 2 weeks. This will be 2 weeks on, and 2 weeks off.
(2) Systemic chemo to prevent additional metastases: Using the FOLFIRI regimen again, I will be given a 1.5-hour infusion of Irinotecan, followed by 46 hours of 5-Fluouroracil given 5ml per hour. This is repeated every 2 weeks.

So it is with a high level of anxiety and trepidation that I showed up at 12:45am for my lab appointment. I have a sort of wild fantasy that in three months I have built up a solid immunity to chemotherapy side effects, that I can blaze through 6 more rounds with ease. Let’s get this done!

I got a call a few days ago from a study doctor saying they were going to add a cholesterol panel and HgbA1c assay to my regular lab work this time, so I should fast after midnight the day before. So I stopped food before midnight, but since the lab appointment was 12 hours and 45 minutes after that, I arrived at the lab absolutely starving, with my stomach roiling with unchecked bile and acid, just ravenously awaiting the introduction of food.

The lab nurse accessed my port by disinfecting the area, then inserting the Huber needle through the skin of my upper chest into the septum of the port. It is a virtually painless procedure, a mere millisecond of a pinprick. The nurse draws blood out from the port to test the blood return and make sure the port catheter is clear, and mine is doing great. Then they draw 3 syringes of blood for my various blood tests, and connect those syringes to the vacuum tubes which sucks out the proper amount of blood for each test.

The nurse didn’t have any orders for the cholesterol test or HgbA1C test, which was weird but we thought maybe they would collect that in the clinic visit. After flushing the port with saline and capping it off, I was sent up to my oncologist appointment.

In the oncologist visit I learned I’ve gained back 5 of the 20 pounds I lost after surgery! Nice!

Also my liver enzymes went up, showing the HAI chemo was stressing my liver, so they wrote a prescription for Actigall 300mg 2x/day to give the liver more protection. This is primarily a drug to protect your gallbladder from getting gallstones, but I don’t have a gallbladder so perhaps they could bring the medication to the pathologist’s freezer where my perfectly healthy gallbladder is probably being stored for posterity. Apparently there is some off-label use of Actigall to battle liver cancers and protect the liver, so now we’ve got that in the mix.

They checked my abdomen and incisions, which are feeling good and healing nicely. Most of the incisions are sealed and healed, and three still have to shed their Dermabond cocoons. They checked my lungs and heart, and were satisfied we can go on with the FOLFIRI chemo today. Yay?

So our next stop was to get me a grilled cheese and avocado sandwich since I was starving, and I ate it out on the balcony outside the infusion clinic waiting room. Having food in my stomach again felt wonderful.

On the way back into the waiting room we ran into a snack cart attended by a retired gentleman who gave us drinks and snacks, and no small amount of encouragement. He survived colon cancer that metastasized to his lungs, went through years of treatment and surgeries, and is now a decade past that. He volunteers for the cancer center to give cheer and hope to other cancer patients. I was touched by the hopefulness of his story and his can-do attitude. It was a huge boost at what was definitely a low moment in my day, those precious last minutes of feeling healthy before a round of chemotherapy.

We were called back and put in an infusion room. Now instead of receiving infusions in a recliner, I am a patient that gets mine in a hospital bed because the nurse needs me to lie down flat to empty and fill my HAI pump. I was pretty tired so I looked forward to lying flat, but I was never able to sleep because I was anxious.

Nurse O was amazing, I’ve had her before and she is the best at answering questions and printing out information sheets related to the questions I ask. She is also incredibly confident and competent. She confirmed for me that I had been getting dexamethasone with my floxuridine in the HAI pump, which totally explained why I hadn’t been able to fall asleep without melatonin for most of the days of the last 2 weeks. I was exhausted but not sleepy for a long time.

Nurse O hooked up an IV pump with a bag of fluids to my port line, then brought out the kit to access my HAI pump. The kit has a needle that is maybe 2 inches long, attached to a line with an empty 50ml syringe screwed on to the end. She disinfected the skin around the HAI pump and, giving me a courteous warning when she was going to place the needle, she expertly placed it precisely in the reservoir. It was practically painless this time, just an instant of needle-stick like the port access, and she didn’t have to move the needle around to get the right spot in the reservoir.

It is weird to watch, but once the HAI pump reservoir is accessed, the contents of the reservoir (leftover floxuridine+dexamethasone) come out under pressure and they fill the syringe without having to draw the plunger. Such is the magic of the HAI pump’s body heat-driven pressure system. When the reservoir was empty, the nurse flushed it with sterile saline by pushing it into the reservoir. She stopped every 10ml or so to let it return to the syringe, then let all the saline return to the syringe. Then she pushed a combination of sterile saline and heparin, removed the access needle and the HAI pump work was finished. She made all this look easy compared to the first time it was accessed. I was impressed.

Next they pushed the irinotecan over 1.5 hours, after first putting atropine into my port to help lessen the immediate GI symptoms you get. I was also given 8mg dexamethasone and 8mg zofran by mouth. And the side effects were pretty immediate, after about 15 minutes of infusion I felt my intestines noisily gurgle in complaint. I regretted eating lunch as I felt some nausea, but the zofran seemed to be holding it back. I ended up going to the toilet after an hour and having some epic loose stools all of a sudden. I returned to the infusion room, dragging my IV pole along with me, and before long it was time to unplug the irinotecan.

I used to get a little 5-FU football to take home, that would infuse the drug 5ml per hour over 46 hours, but now the cancer center is switching over to an electronic pump that you wear on a fanny pack, that delivers the same dose over the same time period. Nurse O connected the new pump and gave us a new biohazard disposal container, a sheaf of new information booklets about home infusion and hospice (!), and talked us through the chemotherapy spill protocol.

I’ve always paid only half an ear to the chemotherapy spill talk. I’m supposed to take a spill kit everywhere I go with me when I leave the house. I guess if my 5FU bag got punctured and leaked all over the floor and the cats, we would have to break out the spill kit and put on the booties, safety goggles, paper hat, two sets of gloves, gown, and march around the house like the government scientists in E.T., putting down special chemotherapy-absorbent towels, cleaning everything, then putting all the waste and the cat corpses into a big yellow biohazard bag. Then we would have to call the cancer center nurse line, and probably fire trucks, ambulances, HAZMAT trucks and nuclear, biological, and chemical teams would show up in our neighborhood and spray all the dog-walkers with special anti-chemotherapy disinfectant spray. I imagine all the dogs and people would lose their hair, the trees would lose all their leaves, and then maybe they would rake up my yard and take all the leaves to a superfund dump or something. Pretty scary.

Nothing like that could ever possibly happen though, we’ve been through 17 chemotherapy rounds now without incident. Besides, I’ve got this junk coursing through my veins and I’m not growing a third eye or anything. I’m not growing much of anything, to tell the truth (especially hair). I imagine that if I don’t cover my sneeze, my cyto-toxic nostril-droplets would settle on the walls and floor and burn through them like the xenomorph acid-for-blood in Alien. I consider myself like some kind of magic chemotherapy factory anyway, my liver breaks down the chemo into its constituent atoms and I pee it out in my toilet, which I have to flush twice. They prefer you have your own bathroom and toilet, but since I have one and a half baths in my house and five humans live here, I have some chlorhexidine wipes I can use to wipe the bathroom after I use it. I can also use them to clean up if I happen to drool too much when dinner is served, so the kitchen table is chemo-free. I have other bodily fluids too, but let’s keep this safe-for-work today.

So imagine my surprise when, the next day it seemed like my shirt was wet. I figured I dripped water on it when I was drinking, but I looked under my shirt and my abdomen was covered with a white powdery substance that was barely dripping out of the taped-up connection between the pump and my port line. I guessed it was like battery acid. I had to get it off before bad bad bad things started to happen. I yelled for my wife and we broke out the spill kit and got her suited up. I stripped down and put my affected clothes in a pillowcase as directed, so they could be cleaned separate from all the other clothes. (And don’t you know, a day or two later our washer stopped working, that is how powerful the bad mojo from this chemotherapy is). This is serious bad shit happening right here.

I was beside myself, I called the nurse line and while I was on hold for a half hour, we tried to figure out how to clean me up before I dissolved into a red pulpy mess. We used soapy paper towels, and discarded them in the yellow biohazard bag. I contemplated taking one of those scrubby showers like from Silkwood, except that I was told not to shower with my port accessed… what a conundrum!

The nurse finally came on the line and was entirely too calm about our predicament. The nurse said to stop the pump, clip the port line closed, then take all the tape off the connection, unscrew and reseat it tightly, and restart the pump and see if the leak happened again, and if it didn’t to wrap gauze around the connections and tape it in place.

NO calls for ambulances. NO helicopters. NO fire trucks. NO five alarm fire-level panic. He even told me I could do it with my bare hands if I was sure to wash them afterwards. I looked at my wife, decked out in her spill regalia.

Spill Cleanup Crew

Are you serious?!

Think about it for a second. Let’s say a little of my spittle dripped on the cat. This didn’t actually ever happen, mind you, and no animals were harmed in the filming of this little scenario. But the spittle on the cat would, assuming it were made of full-dose chemotherapy drug, kill any affected cells that happened to be dividing at that moment, and most of the skin cells wouldn’t be. Hair follicles yes, but most cells at that precise moment in time would be unaffected. And then as the drug diluted and fell away, at worst wouldn’t there be a few dead cells involved? To quote the revised entry for The Earth in The Hitchhiker’s Guide to the Galaxy, isn’t this stuff mostly harmless? I mean, 17 rounds of chemo should tell you the same thing. So after a little overreaction, I imagine the English word spill would properly refer to the release of a substantial portion of the drug rather than drips and drops.

So that was an adventure. The 5FU infusion continued without incident until take-down on Thursday at 5pm.

And that’s when the fun begins. It’s been three months since I’ve had chemo, so I sort of forgot all the side-effects. Tuesday night I couldn’t get to sleep, and took 5mg of melatonin and tried to sleep for more than 2 hours before the melatonin won out. I had days of stomach cramps, not especially painful but disturbing little spasms. My blood sugars went crazy, normally never higher than 150 and they peaked to 300 on the dexamethasone. Three months of progress reversing the peripheral neuropathy in my hands was un-done in one evening. The peripheral neuropathy and numbness in my feet is also worse. My surgical incisions are also bothering me again with little twinges of pain where they were completely fine before. I wonder if the healing cells in my wounds are now being killed off by the chemo drugs.

I forgot how dog-tired I get on the following Friday, when the steroid wears off. On Friday I think I slept most of the day. Part of that sleep was avoiding misery, since at the outset my poops were burning like I had followed a steady diet where habanero peppers were at the base of the food pyramid instead of grains and bread. On Wednesday and Thursday I had to take zofran for nausea a couple of times, which has let’s say a solidifying effect to your toilet output, which thankfully sort of counters the effect of the I-run-to-the-can chemotherapy drug.

Coupled with the skin irritation from the habaneros, Saturday morning I had a life-changing poopy experience that was a 9 out of 10 on the pain scale. It was easily the most pain I had ever endured in my life, like giving birth to magma. It was worse than my post-surgical abscess last year. It was worse than the installation of a drainage tube for that same surgical abscess. It was also worse than the excruciating multiple daily flushes of that line. It was worse than waking up from surgery with the epidural having fallen out. All of those experiences make me shudder.

It was terrible and frightening. The experience activated my adrenaline, and gave me the shakes and chills, and I felt the clammy fist of shock in my chest. I felt dizzy. My heart rate was 130 bpm. My monkey-brain was convinced that I was going to die, and then afterwards the pain receded to maybe a 6 and I cleaned up and had a sitz bath to recover.

I was shook. As I lay down in bed trying to huff out the remaining pain I realized I was suddenly overcome with fear at the idea of doing this 6 times a day for 3 months. I realized with a cold feeling in my stomach that if this is the future I simply can’t survive it.

Obviously I need to discuss all this with the oncologist at our next visit November 1, and I pray that it gets better (Sunday was not much better), or that we alter the plan in a way that doesn’t risk more metastasis.

Thankfully, on Saturday afternoon my sister drove my parents down to my house for a visit and it really refreshed my flagging spirit. We went out with the kids for lunch, and then for dinner while the kids had their own social plans, the grown-ups went out for a nice dinner together. My mom was super happy to see us all, she had been so worried during the surgery and recovery, and just had to see me with her own eyes to know I was okay. Somehow when you’re surrounded by the love of your family, you know deep inside that everything will be okay even if you had doubts.

Sometimes all you can do is clothe yourself in love and prayers, and hope that every wave of pain will wash over you and in the end, you will remain.

Surgery 2, Day 18, Medical Marathon

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Standing in front of the no outlet sign at my house
Here I am trapped at home with no outlet. The bump you see on my left abdomen is my hepatic infusion pump, a hockey-puck-sized pump implanted under my skin.

I slept really badly the night before Medical Marathon day, with a persistent buzzing pain in my abdomen at the incision sites, especially where they had been frosted with Dermabond surgical glue. Whenever the benadryl wears off this usually happens, though it’s much less bad now that most of the excess glue has flaked off my skin.

I had to stop eating and drinking at midnight for my 8am flouroscopy and SPECT scan appointments, and pretty much from the stroke of midnight my mouth was dry and I felt like I was dehydrating fast.

I was also worried about what would happen the next day, which didn’t help. Would we decide to do systemic chemo? Is it too soon to start the hepatic artery infusion pump chemo? Is my liver recovering okay?

So I tried to sleep lying flat on my back in the bed until my bones hurt. I am not a natural back-sleeper so sleep does not come easily. At about 3am I moved down to the recliner downstairs, and stared at the ceiling for a good hour until I put some music on the stereo and it helped me relax and drift off into several 20-minute naps. After a while I tried thunder sounds on YouTube and it helped knock me out until my wife woke me up saying it was time to go to the hospital. I took my morning medicines except the blood thinner, which they asked to be held, and I left out the fish oil, and all vitamins to avoid unexpected blood thinning effects. The best part was getting a sip of cool refreshing water with the pills. I was parched!

We left early while dawn was still creeping across the sky, and we had to swerve to avoid a fallen tree in our lane, and every bump and jostle hurts my abdomen for a second or two. We arrived at the hospital, and my wife dropped me off at the hospital entrance and had me wait on a bench until she parked and came back. When she arrived she took a nearby unused wheelchair and I got into it, thinking it would be a great idea since to date, I’ve only been able to walk a maximum of about 200 meters at once before getting tired out. She wheeled me to the radiology clinic, and we checked in. They gave me a fall-risk bracelet since I was in a wheelchair, then we waited. Patients were called, more patients came and were called, and we sat there for 45 minutes before asking reception if we had been forgotten, we have another appointment coming up with nuclear medicine and don’t want to miss it. The receptionist called someone, then said the nuclear medicine appointment is sort of a part 2 of the radiology appointment, so I will not miss it, just wait.

And wait we did, for a total of a bit more than two hours before I was called. I couldn’t bring anyone with me, so I left my phone and effects with my wife and they wheeled me into a familiar-looking room. This is where my port catheter was installed! I remember the metal table that was too skinny to support your arms, and the overhead fluoroscopy unit and its monitor.

They got me up out of the wheelchair and helped me onto the table, gave me a bolster for under my knees for comfort, and to pass the time while we waited for the doctor, they asked me if I live in the area, how long I’ve been here, my favorite restaurants, that sort of thing. Then the doctor came in, got out a huge Intera 3000 access needle, then turned on the fluoroscope to have a look at my hepatic artery infusion pump. The picture that came up was pretty cool, it looks like someone implanted a tiny UFO in my abdomen. From my perspective, not having x-ray vision, it just looks like a perfect hemisphere under my skin, like a little hard boob on my tummy. I wanted the picture for my blog, and they obliged me:

The hepatic artery infusion pump, and attached catheter going off to the left in front of my spinal column.

The HAI pump is located on my left lower abdomen. It has four little loops around the perimeter for being sutured into place. You can see the catheter coming out the back and headed to my right side to merge with my hepatic artery. In this picture you can see the needle having been placed in the lower left quadrant of the access port. If the correct needle is inserted there, and pushed in deeper than the reservoir, then the needle has direct access to the catheter leading to my artery. This is called bolus mode, where things can be injected directly into my liver. The doctor expertly placed the needle using the fluouroscope for guidance, with only a small instant of pain when the needle went into my abdomen. I’m not used to getting shots there, and I was trying to relax and not jump off the table. The only rough part was that after inserting the needle it needs to be pressed deeper into the pump, which involves some pushing on my abdomen. Normally that wouldn’t probably hurt but after surgery everything aches.

Once the artery catheter was accessed, the doctor slowly pushed some sterile saline to make sure the catheter was flushed and clear, and they called for the nuclear medicine folks to bring down a syringe of radioactive marker. Luckily the half-life of this radioactive material is 6 hours, so… not so bad, right? It took a good half hour for Nicole from nuclear medicine to show up, pull the syringe out of a protective cylinder, and push the radioactive marker into the catheter. They pushed more sterile saline to flush the marker out of the catheter, and I was helped back into the wheelchair. Someone went to fetch my wife, who we met up with out in the hallway, and I was wheeled through a maze of corridors, past the emergency department and ambulance bay, through a secure door and into another building of the hospital. After another couple twists and turns we ended up in a windowless waiting area, where I waited for them to get the SPECT (single-photon emission computerized tomography) scan ready. I was collected from the waiting room and taken to the bathroom, where they wanted me to drain my bladder. I said I thought it would be difficult since I was dehydrated not being able to drink since midnight (now about 11 hours ago), but I went into the bathroom and somehow managed it. When I emerged, the tech had a cup full of water for me which was very sweet and I drank as much as I could before getting onto the table for the SPECT+CT scan. I got another bolster to support my knees comfortably, and had to rest my arms above my head on a sort of triangular structure with a strap to hang on to. When I was ready, the table slid further inside the scan machine until the scan plates were above and below my abdomen. The scanner was a sort of U-shaped frame with two square plates, sort of like x-ray plates, one above and one below you. They adjusted closer to my body until the top plate was an inch or so above my chest.

First came a 5-minute scan where I had to hold completely still, though breathing was okay I couldn’t shift myself on the table until the whole set of scans were completed. The 5-minute scan was pretty tolerable, the scanner rotated slowly in a half-circle around me to get a 3-D image. When this was successfully completed, the technician told me to hold completely still for 30 minutes. The scanner rotated in a half-circle again, but this time the scanner wouldn’t move for several minutes, then it would rotate a few degrees, then another wait.

I did pretty well until about 25 minutes went by, and suddenly I think I hit my no-fidgeting limit. I flashed back to my childhood, and all those Sunday masses at the crack of dawn where my parents ordered me to hold still for an excruciating whole hour. I don’t think I ever once successfully managed that, and 25 minutes might be my theoretical maximum stillness limit. Suddenly my legs felt like they were tensing so I tried to relax them without moving. The last few minutes were a huge test of willpower, and I somehow managed it because the technician counted down the last couple minutes and I was free. BUT I couldn’t move quite yet, we had to do the CT scan. So the technician had me put my elbows closer together so I could fit down the narrow little CT tunnel. I looked down at it, it was a bit wider than the MRI tunnel I believe, so I guessed it would be okay. The technician advised me to close my eyes, and advised me that it would only be about 30 seconds after the CT scanner spins up.

The table slid down into the CT tunnel and I obediently closed my eyes and listened to the machine spinning up. Thirty seconds of the table moving in and out went by quite quickly, and at the end I opened one eye to see how narrow the space was. It wasn’t too bad, didn’t cause any feelings of panic, so I had a look around. It was pretty boring, and as the table came back out of the scanner I closed my eyes again so I would seem more compliant.

And then it was over! I got back into the wheelchair and was wheeled back to the waiting room, and my wife wheeled me out of the building and across a street into the cancer center. I was late for my lab appointment, but they took me in pretty quickly and accessed my port, drew several vials of blood, and my understanding was that I might have to go home with some chemo in my HAI pump and maybe 5-fluouroracil in my port as well, so I asked them to keep the port accessed. The port nurse didn’t see any evidence that a port infusion was planned, but she said they can de-access the port in the infusion lab pretty easily if it is not needed.

My next appointment was at 2pm and it was about 12:30pm, so we went to a cafe for lunch. I had an avocado-toast grilled cheese sandwich and ordered a mango-pineapple-yogurt smoothie. I ate half the sandwich (I haven’t been able to hold a full meal in my stomach yet without discomfort and digestion problems), and part of the smoothie. I realized immediately that the smoothie was a mistake, it hit my stomach like a bomb going off and I felt unsettled and nauseous after that, so I stopped it.

We went up to the oncology clinic and checked in early, got brought back to a room before too long, and my oncologist came in a while later while we were playing with the examination table/chair thingy, trying to get it to recline.

The results of the SPECT scan were favorable. The radiotracer showed good complete infusion, with better coverage in the right hepatic lobe, right where we need it to be. Perfusion to the lungs is “only” 5.72%, which my oncologist says is “good” which I guess here means, not all the dangerous liver chemotherapy will end up leaking into my lungs. I admit to being a little alarmed, I had the impression before that the HAI pump chemo was contained only to the liver. But it makes sense there might be a little leakage. After all, whole metastatic cancer tumors leaked from my bowel into my liver, so anything is possible.

My radioactive liver! Note the big chunk that got removed at the left (which is really the right as I’m facing the camera).

My blood tests were also encouraging. My liver numbers are back in the normal range, which seems miraculous. My AST, which should be between 15 and 41, was 37. After the liver resection and ablation surgery, it was an alarming 1156. My ALT, which should be between 15 and 63, was 53. After surgery it was an apocalyptically high 1718. So good job, Mr. Liver, sounds like you’re bouncing back nicely. Here’s an idea, how about we infuse a bunch of poison now, and see if that trend keeps up?

Speaking of which, this is my oncologist’s first HAI pump chemotherapy treatment, so this will be a journey of discovery for both of us. Luckily the team on the whole has a lot of this under their belt so, no worries!

Next I learned that later this month we will restart FOLFIRI + Bevacizumab for 6 more rounds of systemic chemo in case there is still some cancer breaking off and floating around. Mind you, there is a cool test called Signatera by the folks at Natera that uses your cancer tumor to create an individualized blood test for you that can detect one in a million circulating tumor DNA. It is expensive, probably $15k before the price is negotiated down, and my Blue Cross/Blue Shield insurance decided that they won’t cover it. If the test showed no circulating tumor DNA, there would be no need for systemic chemo at all, but since it’s not the routine standard of care (except if you have Medicare), we have to do the 6 rounds of chemo, each costing about $4000. Total cost of chemo = $24,000. Total cost of Natera testing = $15,000. Kind of a no-brainer financially, more especially if you factor in that I’ll be sh*tting fire and blood again for 3 months, not able to hold down food, eat spicy food, or even mint without feeling like the lining of my mouth was scraped out with a spoon. FOLFIRI is some bad-ass chemo.

So, maybe I’m not looking forward to that so much.

After my meeting with the oncologist, I met with the surgeon for follow-up way ahead of schedule. He was pleased with the healing of the incisions, though everyone who sees them winces a little at the big red allergic rashes where the Dermabond was slathered on. I got the okay to drive again!!! I stopped taking the tramadol 3 days earlier to help this happen. The next day I drove my car, which was a big mistake: every bump in the road felt like getting kicked in the nuts. I will just let things heal a little more before I go out again.

After the surgeon’s meeting we found ourselves with a little time before our 5:30pm infusion appointment, and I was flat out knackered without my afternoon nap, so my wife brought the car around and we drove home, which is thankfully only about 10 minutes away. I closed my eyes and suddenly I was a little irritated that I was woken up immediately afterward, but it turned out I had slept about an hour and it was already time to go back.

It’s kind of funny that you aren’t allowed to check in earlier than 30 minutes from your appointment time, so they specifically don’t want to see me before 5:00pm under any circumstances. And yet at 4:45pm the hospital called my cell phone asking if I intended to show up for the infusion appointment. Did they know I was off-campus now? Does that radioactive marker in my liver tattle out my position to the hospital now? It’s not like I hadn’t already confirmed the appointment days ago in MyChart, filled out a survey, supplied my insurance information, re-affirmed my race, gender, and orientation, supplied them with my pronouns, responded to at least 3 different text messages asking to confirm after I already did so in MyChart, and now confirmed verbally on a call that I would be there.

I checked into the infusion clinic at 5:02pm, went back to get my vitals recorded, then went out to the waiting room and watched some lady on HGTV cry for a half hour when a building got a stop work order slapped on it, or some such. Something very weird was happening at the infusion clinic today. There were only 4 people in the waiting room counting the two of us, and usually there were dozens. I presume everyone else was efficiently handled today, and they were all busy getting infused. So it was a bit of a surprise when we found ourselves still waiting at 6:30pm.

Then we got a call from the oncologist. He was at home by now, but due to a SNAFU I wasn’t asked to sign the permission slip to get HAI infusion today. So we would have to reschedule for next week. I was kind of fine with that, so we packed up and went home. The infusion got rescheduled for Thursday, because my pump was installed nearly 3 weeks ago, and the reservoir holds only 2 weeks of liquid plus a little extra for good measure. If the pump goes dry, apparently bad things happen involving freon propellant and my liver.

I got taken into the back so that the charge nurse could flush and de-access my port, and then we were let go for the day. That was the end of Medical Marathon day. I went home and slept for several hours, I was completely spent.

And then on Thursday we returned at 8:45am to the infusion clinic, signed the permission slip, and got an infusion room with a bed. The nurse came in with the intera 3000 needle kit, and then two other nurses showed up to be trained on how to access the HAI pump reservoir. It was a little harder than it sounded, as they have to tilt the needle after inserting it to get the bottom of the reservoir and extract the remaining sterile saline so it can be replaced with the chemotherapy drug. One of the other nurses took my hand to comfort me while the needle was being moved around, it was a sweet gesture and I must have looked pretty uncomfortable.

They had a lot of trouble drawing out more than a few milliliters of sterile saline (likely because 3 weeks had gone by, and it was nearly dry). When the needle was properly in place, they unwrapped the floxuridine + dexamethasone solution (at half-strength), and slowly injected it into the reservoir. Every so often they would stop to make sure there was some back-flow to confirm the pump was still pressurized and working. When the reservoir was filled, we were cut loose and allowed to go home.

Now for 2 weeks I will be constantly infused with the chemo cocktail, then in 2 more weeks the reservoir will be filled with sterile saline for a 2-week break. This will be repeated every month until at least January. This will be in addition to a 2-week cycle of FOLFIRI for the same period.

So that is the plan going forward.

Surgery 2, Day 16, Two Weeks Later

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This is me in my recliner as is usual these days, helpfully anchored in my chair by our cat Boots.

The surgeon’s nurse, Hansel, told me before the surgery that in 3, maybe 4 weeks, I would feel like a million bucks. Right now, I feel like only about 50 bucks. Enough to get by, but in no position to splurge on anything.

We survived tropical storm Ian blowing through, but we lost power at 9pm on Friday night and it came back on at 2pm Saturday. It was too bad we had to eat all the ice cream before it melted.

This morning my weight was 195.6, so I am down about 14 lbs since surgery day. It is a little hard to quickly gain back weight since without a gallbladder now, large doses of fatty food result in dramatic, liquidy output. I can’t eat very much since my stomach seems to hold only about a third of a meal at this point. I am trying to get down a Premier Protein shake with 30g of protein each day, but it tastes like coffee creamer and it’s hard to get down. And I can only get but so excited about astronaut food.

My pathology report came back on the 4cm x 3.3cm x 3.3 cm pie slice taken out of my liver. The tumor was about 20% killed by chemotherapy, which feels nice because I doubted sometimes that chemo was working at all. The report also mentioned the receipt of a perfect gallbladder with no gallstones. It’s nice to know that at least one of my organs is/was in good shape.

Yesterday I quit the tramadol painkillers cold turkey. I was taking 25mg every 6 hours, and feeling pretty fine until about 90 minutes before the next dose, when all my skin incisions buzzed with pain, and I had aches deep in the right side around my bottom rib. I had a weird feeling the painkillers were leaving me with more pain when they wore off, than really should be there. So I quit the tramadol and am just taking 325mg of Tylenol and benadryl.

The benadryl has helped with the itching from the surgical glue allergy. I first noticed this allergy when my port catheter was installed under the skin of my right chest. They used Durabond to seal it, and Durabond is really just a medical grade cyanoacrylate (super glue). That time, I ended up with a red, inflamed incision and tiny white blisters that took weeks to resolve. When I had my second abdominal surgery, I had 8 mostly small incisions and yet my belly was covered with Durabond like glaze on a donut. I broke out into huge areas of red, inflamed skin that blistered and oozed, and the surgery team promised to add Durabond to my chart as a definite allergy. I am pretty sure I have had more suffering from the allergy than from the incisions and their healing process.

I discovered after getting home from the hospital, that in areas where there were no incisions the Durabond was starting to peel and flake, and also realized that like superglue, Durabond also fluoresces under black light. So every day I chose a little area of bare skin and using ultraviolet light on a seek and destroy mission, I peeled off the surgical glue left there, being especially carefully not to go near any of the incisions. In a matter of a day or so, the redness and blistering of the nearby skin stopped and so did some of the suffering.

I have some pictures below as an example, if you’re weak at the knees or think this is NSFW, don’t expand the link below:

Show Carnage

It’s been two days now with no tramadol, and I am getting more accustomed to living with a level 3 sort of pain at its peak, and able to move a little faster and suffer a bit less from it.

I’ve had a couple energy work sessions from our friend Scott, and I am very grateful for the calm, relaxing feeling they left me with, and each time I have found them hugely helpful with reducing background pain levels.

Also in the last two nights, I have gotten much better sleep as well, with solid 3- to 6-hour sleep sessions. When I returned from the hospital, I couldn’t sleep flat without stretching my incisions and making them hurt after about 2 hours of lying down. Jen bought a set of bolsters and wedges to support me in an inclined position, and I was able to sleep with those… but not well, it resulted in other parts of my back hurting which also woke me up. Some nights I was uncomfortable and sat awake for hours praying for sleep, which I would only get the next day in my recliner after hitting peak exhaustion.

Things are coming together now. Less discomfort, more sleep, higher energy level with more daily activity and three 200m walks per day. I have been listening to music, taking regular naps, and finally I’ve had some time to make progress on TV shows, which are sort of a low priority for me. Today I finished The Good Place after a year of working at it steadily. Yesterday I finished the first season of Picard. I’m a little hesitant to start anything new, since I still have to finish Obi-Wan and something else I’ve forgotten.

I’m trying to relax but I realize with a little bit of dread that now I only have tomorrow, Monday the 3rd of October, as my last unencumbered recovery day so I’d better enjoy it.

What comes next?

On Tuesday I am scheduled to be at the Cancer Center from 8:00am until about 7:00pm. I’m a little overwhelmed, sleeping is such a big part of my recovery days and I can’t imagine surviving 11 hours of walking around, waiting, and going through procedures all day. My fingers are crossed!

So at 8am I go to “IR Flouro Guided Needle Placement” where I expect my hepatic artery infusion pump will be accessed and assessed.

At 9am I have “nuclear medicine tumor localization SPECT (single-photon emission computerized tomography) with concurrent CT scan” which is like a PET scan where a radioactive tracer is injected and used to find tumor(s).

at 1030am I go to the lab and have my port accessed, and blood taken for lab testing.

At 2pm I visit my oncologist for a checkup and to determine if we will do some rounds of 5-Flouroracil (5FU).

At 3pm I visit my liver surgeon for surgery follow-up

at 5:30pm I go to the infusion clinic for a 5FU infuser that lasts 46 hours, and possibly for filling my HAI pump with liver chemo drugs.

All in all, a big day planned!

I’m not sure if I’m ready to go back into chemotherapy so soon. Since it always makes me heal wounds so slowly, I shudder to think about its effect on my recovery. Each day seems a bit better than the last, and I pray that continues.

Surgery 2, Day #7, Home at Last

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I had such a nice sleep overnight, and woke up well-rested. Last night my evening stroll went really well. As always, I was attached to telemetry full-time, I needed no supplementary oxygen, and kept my O2 saturation levels in the 90s while doing two laps around the ward. The nurses, surgery team, and the doctor on the floor were very pleased with the progress, since I was on 8L of supplemental oxygen two days earlier.

After my exercise I was tired so I went back to the hospital bed and rested until the respiratory therapist showed up. He came to hook me up, for the 4th night in a row, to a BIPAP (bilevel positive airway pressure) system. Outside of the ICU, I can only use the machine for 4 hours of breathing at a time. Since finding out I was on no supplemental oxygen, the respiratory therapist discussed with me whether I should do the BIPAP this last night at all. I told how the unit gives me good sleep but it also gives me anxiety dreams about escaping prison, or confederate soldiers, or Nazis, or pushy salespeople.

One advantage to keeping the BIPAP was that it would keep me from having low O2 sats during the night, which would be good in case the staff overreacted and kept me a bit longer. But he figured the progress thus far was very encouraging and I would sleep better off the BIPAP. So he cheerfully collected all the equipment and left me alone for the evening.

I slept so well, free of the BIPAP. Either my O2 sats were doing really well, or the nurse didn’t plan on bugging me, but I not disturbed much at all. Every 2 hours I was awakened for vital signs, blood sugar level checks, and every 6 hours, a blood draw for activated partial thromboplastin time (APTT). 6 hours seems like a long time between tests, but when they are a blood draw with a needle, it seemed like I was constantly having needles stuck into my arm.

Earlier in the evening they removed my second IV, located in my right hand, because it had clogged and stopped infusing, and while trying to force it a little with saline, it burst and started leaking. Better that, than pushing some clotted-up junk into my blood vessel. Also after a magnesium infusion that day, I had been unhooked from all IV fluids for an extra-special kind of freedom — no supplementary oxygen cannula and no IV lines, so it wasn’t really needed anymore. One nice benefit of getting short on your hospital stay!

At around 6am I got my Tramadol, Tylenol, and Benedryl and shortly afterwards the surgical team stopped by on their morning rounds. They checked out my belly wounds and the edema in my scrotum and were satisfied with what they observed. They said I would be discharged by noon today!

Normally discharge times are a cruel, horrible lie and you spend hours and hours waiting for mysterious things to happen, but this time it was pretty fast. I had my first regular-diet breakfast, which consisted of scrambled eggs with a slice of American cheese melted over the top, grits, yogurt, vanilla Ensure, and a couple pats of butter, salt, and pepper. The last elements were new, denied to me until now due to the post-surgical bland diet, and I have to say that adding butter, salt, and pepper to the grits made all the difference.

We tried during this time to arrange having a few new prescriptions delivered to the hospital room using the Meds to Beds program, but they could not guarantee a before-noon time so we would have to brave the clinic and pharmacy’s traffic circle and get curb pickup for these.

The nurse and staff rotation happened late in the morning, and we got a nurse tech named April who actually knew us from one of the previous hospitalizations! The benefits of being a frequent flyer! We did a little catch-up before going over the 100-page tome of discharge papers, detailing all medications, upcoming procedures, and the like. We got advice and support from the surgical team member on duty, and the nurse came to take out the last IV in my left wrist, the red O2 saturation light wrapped around my finger, and all the telemetry wires. It was a relief to get the itchy telemetry adhesives off my skin.

I got dressed in the loose-fitting street clothes I wore when I arrived for surgery a week earlier, and before long at all patient transport was pushing me and our backpacks in a wheelchair and trolley to the front entrance.

My mom read my mind or the universe, as usual, and texted me just as I got into the car, asking if they were going to let me go today, and I replied that we were already discharged and headed home! We spent about a half hour finding the pharmacy curbside delivery spaces, which were hidden deep inside a fire lane covered in NO PARKING, NO STANDING and NO STOPPING signs, and a helpful sign about how your car would be taken and crushed if you stopped there, and I called the pharmacy and they confirmed it was okay to park there until they came out with the medications.

And then we were on the way home! A downside to being released before noon was that I didn’t have any of my painkillers on board, the 6am tramadol lasts about 4 hours, and the Tylenol lasts 6 hours at best. So all the jostling during my transport to the front entrance by wheelchair, and especially my transport home in the car, felt like being worked over by a couple bar bouncers. I found some gum in my wife’s car and kept chewing more and more pieces of it to give my brain something else to think about. But distractions were easily found: in our 7 minute drive home, I randomly got texted by about 4 different people asking if I was still alive, or if I would ever get home. I would update them later, I was not in the best shape to do so at the time.

When we got home, my wife brought me my cousin Brandi’s walker — a huge lifesaver during the last year — and I tried to negotiate my way across a yard full of exposed tree roots, then up four steps to the back door and at last I settled down in my recliner and had a lovely reunion with my oldest son and with my in-laws who stayed with the kids and minded the house while we were away. They left quickly since they had a lot of stuff to get back to doing, and I did regret not getting enough time to visit with them before they went.

Then I got handed my doses of Tramadol and Tylenol, and leaned back in the chair to get a bit of relaxing in. It was very pleasant being back in my own home, for once completely free of being hounded by phlebotomists and glucose finger sticks, and in charge of my own care for the time being. I felt like Bilbo returning from his Hobbit adventures and sitting back in a comfortable chair. For lunch I had a couple stuffed shells that my sister-in-law had brought over (amazing!), roasted butternut squash soup, and roasted vegetables. This was the most flavorful food to hit my palate in a long, long time. I listened to some relaxing bardcore music on Youtube and had a small portion of a velvety-rich chocolate cake that our friend Aggie made.

I existed in a state of bliss for a while, but it was briefly interrupted by our cat Tiga, who wanted some lap time on the cat quilt my sister made for me. I spread it out and Tiga soaked up affection and purred for a while, stretching out more and more, until one little, sharp, kneading claw crept off the very bottom of the quilt onto the leg of my sweat pants. I jumped and leaped with the unexpected shock, the cat propelled himself to safety, and my entire abdomen erupted into unbelievable pain that took me at least half an hour to recover from. It felt like my intestines had leapt out of my torso, and I still pray it didn’t do any terrible damage. It was definitely the worst thing I felt since the surgery. I resolved there would be no more lap-snuggling for a while, and the cats circled me all day like the black and white yin-yang koi, trying to find an opening and being very sad indeed they were being frustrated by this consequence.

So far, I’ve learned that not having a gallbladder anymore, even slightly medium-sized portions are uncomfortable to digest, since instead of dumping bile into the digestive tract, we have to meter our food intake to balance it against what continuously leaks out of the liver. At this stage it is very easy to overwhelm the bile production.

The nicest things about being home: first, getting in and out of the recliner is so much easier than getting in and out of a hospital bed; second, our fridge is full of the most amazing food when my appetite comes back; third, although lying flat on my bed is uncomfortable and a little bit painful, it is so nice to nap in my own bed; fourth, it is so quiet here compared to the stressful buzzing and dinging of the hospital, and finally, being in my familiar place surrounded by the love of my family and waited on by my incredibly helpful oldest son is an irreplaceable blessing.

To all who read this, be sure to count those blessings and savor the peaceful moments afforded to you! Thanks everyone for your generosity, prayers, and well-wishes!!!

Second Surgery Day #2

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The day began with the surgeon’s team doing their rounds at about 7am. There were about 5 or 6 of them all at once, and I still wonder how so many people can fit in this tiny room. There is only a foot of space at the foot of the bed, 3 feet to the left of the bed, 2 feet to the bathroom door, and another 3 feet to the recliner where my wife has been sleeping and staying by my side 24/7.

I probably wasn’t making a lot of sense at that point between the pain and the dilaudid bursts, but I remember being clear that breathing was still really painful at the base of my right lung after drawing only about 500ml of air, so I was kind of panting like a puppy dog at summer high noon, EXCEPT I must draw the distinction that I was not short of breath as I consider it; I never had to struggle for enough oxygen. Technically my breaths were short, which to me is a subtle difference that was totally lost on everyone else, who seemed to think I was struggling for air.

This breathing status, noted on day #1, immediately led to blood tests, incentive spirometery, a chest x-ray, then a CT scan. They were pleased with the results of the CT, saying that there was no internal bleeding, just a pleural effusion that was collapsing part of my right lung. So now on day #2 I was sent down to get another chest X-ray, and that showed improvement of the junky right lung, an encouraging sign. So today’s plan was to remove the foley catheter, after which I had 8 hours to pee spontaneously. I learned my lesson the first time that I can’t pee lying down, so I needed to be able to stand as soon as possible. I desperately did not want to experience another straight cath so at the 8th hour I dosed myself up with dilaudid, raised the back of the bed to about 90 degrees so I was folded up like a painful taco. I grabbed the bar above my head, carefully swung my legs off the right side of the bed, and with a little pulling from my wife and pushing by the nurse, I had my feet on the floor facing my walker. These walkers are a life-saver and I am not too proud to say I love them. I was able to pull up onto my feet and shuffle to the bathroom, where after about a minute of my bladder trying to remember how to operate, I was able to empty my pee into the hand-held urinal. What a relief! Then, the chore accomplished, I scooted back to the gurney and lowered myself down. There were a few minutes of payback while the adreneline wore off, but I lowered the bed back to a 45 degree incline and relaxed. I think I took a goodly long nap.

This exertion dropped my O2 saturation levels into the 80s which alarmed the nurses so I was put on a cannula with 2L of oxygen. This didn’t have much effect as when struggling through pain I’ve learned I revert to caveman mouth-breather mode, and unless the cannula was pressed into my teeth somehow, my O2 levels weren’t changing much. So the nurse turned up the O2 to 4L, and I learned to breathe through my nose to make them happy. Every time I fell asleep on my back though, I would forget myself and breathe through my mouth again, which caused panic and another 1L rise in the oxygen level.

I was also put on EKG telemetry so my pulse and Sp02 could be sent to the nurse’s station at all times. Though they say a watched pot never boils, my pot got to boiling a great deal and every aberration in my breathing now got an instant response from a team of nurses. So by the end of Day #2 I was now on 5L of oxygen, most of which I probably didn’t need, and I had to be sure to breathe with the incentive spirometer 10 times an hour.

They also brought a respiratory therapy team who connected me to a BIPAP, a positive airway pressure system that I could wear for only 4 hours at a time unless I was in the ICU, and I felt like escalating to the ICU would cause more panic than ever. I had never done a CPAP or BIPAP befrore so I had to get used to a machine breathing for me, which was surprisingly easy and either it was a long day or the BIPAP was relaxing, in any case I crashed into a very deep sleep for 4 hours.

Feeling like Lord Vadersheim

I woke up sort of hyper-aware that 4 hours had already passed, and I was waiting for my BIPAP to turn into a pumpkin, or at least for someone to show up and disconnect it. My mouth and throat were drier than the Sahara and I rang the nurses, who were confused by my request to remove the BIPAP and wanted to have a long discussion about it, which was impossible because any attempt on my part to make speech was met with instant lung-filling pressure, and I had trouble figuring out the timing. I ripped the mask off. The nurse was of the opinion that anything that worked good for 4 hours was worth doing for 8 hours, and had never heard of the 4 hour rule the respiratory therapist mentioned. But they shut the machine down and put me back on cannula oxygen, and I took a well-needed tiny sip of water to rehydrate my mouth, which was like astronaut freeze-dried ice cream at this point. Very soon I realized my lung pain that I experienced after drawing in 500ml of air, was now happening instantly and all the time, so I was approved for another bolus of dilaudid which helped make the pain tolerable but didn’t reduce it lower than a 4.

That was pretty much the end of day #2, as the dilaudid clouded my brain and I slept very soundly from then until morning.

Second Surgery, Day #1!

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My day began at about 3:30am. I began drinking water and had about 32 oz in me when it was time to take a chrlorhexidine shower. Using a special sponge soaked in chlorhexidine you scrub down once the night before and once again about an hour prior to the surgery.

They give you a clearfast drink with 50g of carbohydrates and it has to be consumed 1hr before you show up for the surgery. I had to be at the surgicalwaiting room by 5:15am for the 7:14AM surgery.

This time there were no COVID restrictions so my wife got to join me in the waiting room. We had to visit with the Financial counselor and provide insurance information. and shortly after I was called to the back room, weighed and asked dozens of questions about my health history. It was really too early to recall all the details so they helpfully read them to me from my chart. Jeez grandpa, what are you asking me these questions for anyway, if you know the answers?

Next they place an IV in my left arm and to give the nurse credit, she did it on one try which was a whole lot better than the last surgery where it took three attempts. They tested my blood sugar, which was 225. They thought that alarming but I didn’t because 50g of carbs in a drink after 10 hours of empty stomach tends to do that king of thing to your blood sugar.

They called me wife in for a short while but sent her out again when it was time to place the epidural. I thought this was going to be no big deal since last time it was expertly placed in a few seconds. This time, however, involved 5 different attempts which I could feel the hurt inside my spine as they punctured it. Two nurses were comforting me by giving me their hands to hold and I hope I didn’t cause them permanent damage. By the time they got the 5th one in, I was sweating like I haven’t sweated since running cross-country in high school in the August heat. I was dripping wet and the Tegaderm patch they put over the tubing was wet and clammy on my skin. I was leaned back and wheeled into the operating room, where the anesthesologists and nurses chatted with me for a while before putting a mask on my face and I remembered no more.

My series of epidural attempts

I woke up in the recovery room in excruciating pain, as is now usual for surgery with me. They explained that my epidural “fell out” and they were using instead going to use dilaudid to manage my pain now. Unfortunately it only worked but so well, it only reduced the pain level down to the 6s and giving me one memorable day of pain that I wish I could forget. It was a rough day, and the pain was not even the chief concern. The biggest problem was that my blood O2 levels were in the 80s even on high flow oxygen, and that had to be worked out.

I got a portable chest X-ray in my bed, where they slide a plate into the mattress behind your back, and after the surgeons and radiologists looked at it carefully they said my lower right lung was “junky” and the embolism in the lower part of my left lung was a bit smaller but still present. I was having severe pain whenever I drew in more than 500ml of breath, so to make that better I was given an incentive spirometer to exercise with 10 times an hour. Calling the thing an incentive spirometer is a bit of a misnomer, since the only incentive you have for using it is the hope of staying alive. Whenever I inhaled with it, it used a vacuum to lift a little piston to the level you are capable of inhaling, in my case this was 250-500ml which is apparently, pretty unsatisfactory.

After the junky chest x-ray came a CT scan, at a guess this was my 14th. I got a lovely joyride in my bed through the various atriums and glass-walled corridors between hospital buildings, which was a treat seeing the sunshine and being on my own tour of the halls, which since I presume my amusement park days are at a close, is a special exciting treat. Except for the 1/2 mile per hour speed, but still a treat.

The CT scan machine was nice and new. sleek like a Porsche, and fast too, which was a godsend because I could neither breathe deeply nor hold my breath for long when asked to. After a couple dry passes, an enormous syringe squirts about 150ml of iodine into your IV for contrast. You get all warm and tingly inside, and then they do another pass.

As usual if the news is good you never hear about it until later, and I think it was at the next morning’s surgical rounds that I heard my lung didn’t have a new embolism (the one on the lower lobe of the left side is still there), but instead has a pleural effusion in the lower right side. This is a mass of fluid that built up during the surgery, probably from the presence of excess hydration. We will have to work hard in the next few days to get my lungs back into shape through walking and breathing exercises.

I got a dilaudid button dispenser the first day and the first night was the worst night of sleep I have had in a very long time. I would be asleep when the button lit up and could be pressed again, so I would miss it until the pain woke me up and I pressed the button. I was behind the whole night until 4am when the nurse got me permission for a bolus infusion, which got me ahead of the pain again and I was able to sleep much easier. at least until 6am rounds, when five surgeons came to ask me a lot of questions.

This wraps up the first day’s events. I am behind because honestly getting better is hard work, and I am super tired the rest of the time. Feel free to post questions in the comments and I will try to answer them or make updates as I am able!

My Cancerversary

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Today is my cancerversary. One year ago today I was diagnosed with two stage III colon cancer tumors, and on September 29, 2021 I had surgery to remove about half my colon. After surviving a painful abscess complication and a strange bout of GI distress that both put me in the hospital for days, I soon got to feeling better and having my body operate more normally. I endured 15 rounds of chemotherapy, with two different regimens (FOLFOX and then FOLFIRI). The whole time my CEA levels have been increasing, showing cancer growth somewhere. After a couple PET scans it was discovered that I have four metastases in my liver. Since July 17, 2022 I have been off the chemotherapy while waiting for liver resection surgery and I’m feeling great.

The current state of things is that on September 16th, 2022 I am scheduled for liver resection surgery to cut out three tumors and perform an ablation on a fourth. I will have a hepatic artery infusion pump installed to deliver more powerful chemotherapy specifically to my liver, to keep other tumors from forming or to reduce very small tumors if they haven’t yet appeared.

I am living a happy, blessed, and grateful life, and I hope that things go well with this new procedure. Love and prayers are always appreciated!

First Chemotherapy Day

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On November 30, 2021 at 8:30am, I arrived at the cancer center and went straight to the lab.  I was taken to a nurse who accessed my new port for the second time. The first time it was accessed it was done to test the port at the time it was installed but the procedure was brief and my skin was numbed from the lidocaine shots used in the procedure. I was a bit anxious about whether it would hurt to put a big 20 gauge Huber needle into the port. The nurse had me take a deep breath and inserted the needle, which was momentarily a little painful but easily tolerable, certainly less than an IV insertion and probably less than a blood draw: even though those tiny butterfly needles are like an insect bite, the phlebotomist does sometimes have to fish around to get into the vein. In the end I found the port access procedure to be very easy and tolerable even without the prescription lidocaine cream that some people apply about an hour before their port is accessed.

After the needle is inserted, the nurse flushed the port by pushing about 8ml of saline. Partway through this procedure she checked for positive blood return by drawing back some blood into the saline to confirm that the port was clear, which looks wicked cool because a puff of red erupted into the clear saline in the syringe, before it was all pushed through the port to flush it. Next the nurse used a different, larger syringe to draw a good amount of blood, which she then injected into a handful of vials. The lab ran a serious number of tests — a complete blood count, a comprehensive metabolic panel, iron levels, cholesterol (I didn’t fast or realize that would be checked), vitamin B12 level, CEA (carcinoembryonic antigen), and a half dozen other tests.

The nurse carefully covered the port and needle assembly with a palm-sized Tagaderm patch and several pre-cut tape strips that fix the line in place so it can resist some amount of accidental pulling or stress, and released me to go to the oncologist’s clinic on the 3rd floor. After a short wait I was brought into the clinic and had my vitals taken. With clothes and shoes on I was 203 lbs, so compared to my home scale weight of 194, I guess my whole kit weighs 9 pounds!

We were brought into a comfortable clinic room with a cool recliner-exam table and met with the Oncology PA, who did an examination and asked questions, explained again what was about to happen, the drugs involved, and what to do when side effects occurred.

I had the option of volunteering for a study.  I’ve read online that simply being in a study statistically improves your survival odds dramatically, so I accepted the offer and spent a while being briefed on the study.  I had some associated vitals captured again, and we were soon released to go up to the 4th floor infusion clinic.

The waiting room for the infusion clinic was beautiful, with a panoramic view to the North of the cancer center and the  Clinic area, parking garage, and the rosemary-filled garden at the center of the plaza. It was a beautiful sunny day, so we took some seats by the window and snapped a couple photos to memorialize the first chemotherapy infusion day.

Soon we were brought into the infusion clinic, room 52, which seems like one of a quite large number of rooms. It was an impressive windowed private room with a view, with a gorgeous south-facing view of the campus. The room had a comfortable-looking green chair for Jen to sit in, and a sweet recliner for me.

I was offered snacks, most of which were heavy on carbs and sugar, and given ice water and an indulgent hot cocoa to sip on. I brought some nice smoked gouda cheese I cut into cubes and put into a plastic container for a healthier snack, so I had a few of those. I was given 8mg of Dexamethasone and 8mg of Zofran and allowed 30 minutes for those to start taking effect before any infusions started. They started me on an IV dextrose solution for extra hydration, then after the waiting period they started the oxaliplatin infusion. It seemed to be going super fast, like 4 drops a second. I focused on drinking all the ice water and getting another cup of water, to stay hydrated. For about 45 minutes I didn’t feel much of anything but after a while I developed a slight numbness at the tip of my tongue, and an odd slightly-numb, slightly puffy feeling developed in my nose and cheeks over the next hour. Near the end I started to feel a little unsettled in my stomach but no nausea.

Soon the infusion was done and another nurse came in to describe how the next infusion of the 5-fluorouracil would work over the next 46 hours. They hooked up a little clear chemo hand-grenade sort of contraption with a 5ml per hour limiter attached in the line, and spent about twenty minutes educating us about what to do in case of spills or leaks (the stuff is cytotoxic so they gave us a whole hazard cleanup suit and materials).

We got scheduled for a home health care nurse to come on Thursday at 12:30pm to remove the chemo grenade and de-access the port, and we were released.

We left the clinic after stopping in the lobby to bundle me up, as they warned me not to let cold air touch my bare skin, and it was in the 40s outside, pretty chilly. I put on a hat, scarf, and gloves and we ventured outside. Almost immediately my cheeks and face felt very uncomfortably cold, so I kept my cloth face mask on because it helped keep my face warm. We made it easily to the car, I had no problems walking or with balance. A successful first infusion and start to the second!

Side effect: Nausea. I felt pretty well after the first infusion except my stomach felt unsettled for most of the rest of the day. About 11 hours from my first dose of Zofran I started feeling increasingly nauseous, and I ended up taking the next pill about 15 minutes early. The next time I felt nausea was about 14 hours later, so I took another Zofran. After that it was about 20 hours, and I took the third Zofran. I didn’t need it again after that, no more nausea! I felt fine until I ate something, then my stomach would feel queasy for an hour or so, then return to normal. My working theory is that the oxaliplatin caused the nausea but that I tolerated the 5-fluorouracil better, and as I expelled the oxaliplatin my stomach felt much better.

Side effect: Cold dysesthesia. I was fixing myself some dinner that night and took some ginger out of the fridge. I peeled it using a spoon then held it down on the cutting board to slice it. After about 15 seconds of slicing, I thought I had cut myself, let go of the ginger, and looked at my finger expecting to see blood, but there was none. I went back to slicing and the same thing happened 10 seconds later. I tried just holding the ginger in my hand and realized, this is a very intense needle-like sensation that happens when my skin touches very cold things. I noticed while being outside in the cold that breathing through my mouth makes my throat very scratchy, so I wear a face mask and breathe through my nose and it is comfortable to do so. Amazing that wearing a face mask makes my breathing easier! On day 2 I abandoned any kind of cold water, it was too painful to have in my mouth, let alone to swallow. I switched over to hot tea but I don’t have much caffeine anymore and after a half dozen cups of tea I had a lot of trouble sleeping that night. On day 3 I discovered lukewarm water but it was hard to get the motivation to drink at least 64 ounces of warm water every day, so I started adding half a fresh-squeezed lemon to each 16 ounce glass. It didn’t add much sugar to my diet and since I didn’t yet show signs of the mouth sores that many people on chemotherapy report, it is working well for me and is as refreshing as a lukewarm glass of water can be. 

Thankfully, on day 6 I could have cool (not icy) water without trouble, and by that evening I could even have a spoonful of ice cream without suffering any discomfort. More than one spoon of ice cream cooled my mouth too much and I had an irritating scratchy feeling in my throat, so I keep my pleasures and indulgences small and just appreciate them more. Right now I’m really into Perry’s Parkerhouse Amaretto ice cream with maraschino cherries. One delightful spoonful at a time. By day 8 I think the cold sensitivity was pretty much entirely gone. I still haven’t jumped right back into putting ice in my drinks.

Side effect: first bite syndrome. When I first take a bite of food, especially sugary or sour foods, the salivary glands activate and release saliva, and occasionally I get an intense nervy feeling near my ear(s). On day 2 I found out this can be quite uncomfortable when I first took a bite of food and the feeling took over for 20 seconds – way, way longer and more intense than usual. This lasted until day 4.

Side effect: liver pain? On day 10 around lunchtime I felt a low-level, tolerable pain like my lowest right rib was irritated. It was worse when I used my abdominal muscles to stand up, or if I was standing for a long time in the kitchen, or walking around the neighborhood. It waned by that same evening, and was followed by epic diarrhea.

Complication: diarrhea. Just when I thought I was out of the woods, on day 10 I started having frequent, watery diarrhea. I tried desperately to drink a 50/50 mixture of pedialyte and water, 64 ounces of it on day 10, and 96 ounces of it on day 11. Unfortunately on day 11, I passed out on the bathroom floor and had an ambulance ride to the hospital. The diarrhea lasted until day 13. It took several IV bags of fluids for me to snap back and be stable on my feet again. I needed a couple days of bowel rest and IV fluids to overcome it.

Side effect: fatigue. Before the chemotherapy infusion started I was given dexamethasone, and on day 2 and day 3 I also took a dose of this at home. I felt surprisingly normal on those 3 days while the 5-fluorouracil was infusing, and I was even a bit overconfident in retrospect and hopeful that this chemotherapy thing was going to be cake. Maybe it was the ‘roid rage talking but when I stopped the dexamethasone on day 4, about 3pm I got really fatigued. This is when my body realized it’s been poisoned and freaks out. I worked through the tiredness until 5pm, ate some dinner, then went right to bed. I slept 12 hours like the dead and woke up. On the morning of Day 5, I felt reasonably energetic and even did some drywall repair in the kitchen where the hooks that hold my pans on the wall pulled out. I skim coated the wall to repaint it, then I realized all my chest and abdominal muscles were sore and tired. I laid down in bed to rest a bit and ended up sleeping 3 more hours. I woke up, went out to the workshop, and cut a 2-inch wide red oak recycled board to match the width of the wall beside my stove, planed it down to the thickness I wanted, and after measuring with the stud finder, I drilled holes in the wood where the studs in the wall would go. I sanded and stained the wood. Then feeling super tired, I went back to bed and took a two hour nap. Then I woke up and sanded the kitchen wall, and painted it. Looking great! I made dinner and went to bed early. In that 24 hour period I slept 17 hours! Day 6 was better, I woke feeling more refreshed and was able to put another coat of paint on the wall, go for a walk of 3000 steps, and then, batteries depleted, took a nap. I made buffalo wings for everyone for dinner, which took a lot of energy and standing. I even made myself a special non-spicy buffalo sauce that was amazing, I took time to write the recipe down. I had 4 non-spicy wings before my stomach cried for mercy… pushing the envelope of greasy food, but I was able to digest it with no problems. I balanced it out with a pound of fresh spinach prepared as Indian <em>saag paneer</em> with onion, spinach, paneer (cheese, like kind of a block of solid cottage cheese from India), ginger, coriander, cumin, and garam masala. Yummy!

Some concluding thoughts on my first chemotherapy round

All in all, even though some of the more dramatic features of round 1 really sucked, I feel fortunate that I was spared from some of the intense or horrible side effects I’ve seen and heard about. I’d like to say I’m looking forward to round 2 but really I’m more looking forward to getting it done with.  I am grateful for the doctors, nurses, researchers, and medical professionals who made this kind of treatment possible, and also grateful for the prayers and good thoughts my family and friends have been sending. I feel very loved and appreciated in this world and I love you all.

Surgery Day!

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My day begins at 4:30am with a solid 150 minutes of sleep under my belt. I am not pooping anymore, and I am seriously dehydrated so I drink water when I can. I have to take another shower with a second surgical scrub sponge soaked in chlorhexidine. I am even more orange when I am finished. I feel like I took a bath in Tang. Do they even have Tang anymore?

At 5:00am I take my morning medication which by now is reduced to my 50mg metoprolol succinate. I can’t have my 81mg aspirin, or any other drugs and supplements that could thin my blood and cause a dangerous complication. For some reason though, last night’s Crestor dose was perfectly safe. Ironic, because the statin is the most dangerous drug I take. Well, unless you count the melamine-laced 2000mg of generic back-alley metformin I had been taking for years that caused my right bottom rib to ache front and back for 24 hours a day, until they let me stop taking it in favor of Jardiance. And in the same day the pain miraculously stopped. Turns out all that melamine causes colon cancer. And the pain just happened to be almost exactly in the place where I had a 5cm cancer tumor. Who knew? Oh and the melamine-laced Losartan I took for 10 years before they figured out that was tainted and recalled it, too. A double dose of cancer-causing chemicals. But at least my heart seems to be working okay. I’m not bitter. Do I sound bitter?

No more clear liquids after 5:15am. I am still dehydrated and can feel my heartbeat is fast, with occasional pre-ventricular contractions. This seems to only happen when I am dehydrated, and it worries me a bit to go into surgery if my heart is beating erratically. At 5:30am I have to chug a ClearFast bottle. This is a special carbohydrate drink you drink within 15 minutes on the morning of the surgery. This drink helps in the recovery from surgery by making you less thirsty, controlling your blood sugar, and maintaining your muscle strength. It doesn’t taste terrible. It doesn’t taste good either, it is sort of like lemony wormwood tea. Very important: you have to bring the empty bottle to surgery with you to prove you drank it, or the surgery is cancelled. So I stick it in my pants where it will chafe and make me uncomfortable yet acutely aware of its presence.

I have to arrive at the hospital at 6:25am and I must get dropped off at the door. My wife isn’t allowed to enter the hospital at that time due to COVID restrictions. They will keep her up to date via text message and will call her on her cell phone so that she arrives at the hospital to talk to the surgeon the moment after the surgery is complete. After I spend some time in the recovery room and am moved to a proper room, she will be allowed to visit me.

So I creep through the dark, empty hospital at 6:10am and go to the surgical waiting room. A receptionist checks my name and I try to prove to her I’ve taken the ClearFast drink by showing her the bottle. She stares at it like I were holding up a slimy toad; she has no idea what this bottle is for and asks me to hang on to it. I get a wristband for this ride and I am pointed at the waiting area, where fully 5 people and their spouses are waiting together for their name to be called. That’s right, the spouses who had to drop them off and couldn’t enter the hospital or wait in the waiting room because of COVID.

I am feeling pretty encouraged because it’s clear I am far and away the healthiest person in this waiting room, ignorant spouses included.

The other day in the shower, I had a sort of geeky epiphany. I realized that my chances of surviving the surgery are like rolling a saving throw on a 1d20 — I have to roll a 2 or better to live. Those aren’t bad odds. And yet, there is nothing like the moments before a surgery to reflect on life and realize I have really had a great one — a wonderful marriage to a wonderful wife, a loving family that makes me proud, a life overflowing with love and joy, a great and interesting career and an amazing employer. I say a quick prayer of thanksgiving and in return I get a weird, warm feeling of peace. I am going to be okay. Be not afraid.

I am called into the surgery preparation area, asked my name and birthdate, and then they threw me a curveball by asking what I am here for today, and I briefly wonder if I shouldn’t have used a Sharpie to mark on my belly the parts of colon that should be removed, and the approximate location of the tumors. I have to confirm my list of prescriptions and tell which I have held for surgery and which I have not held, which takes a while. They confiscate my Freestyle Libre continuous glucose monitor, which sucks because I am on day 3 of 14 and that’s $37.50 cast to the wind. And little did I know, they would be pricking my fingers every couple hours for the next 3 days — even though I won’t be eating any carbs or sugar for a good while.

Finally I get asked for my ClearFast bottle and they also want my wallet and my belt. And my pants and shirt, shoes and socks. I need to cough up any piercings, contacts, or dentures, all of which don’t apply. Then I get a bright yellow pair of grippy socks and a gown.

My nurse worries me a bit. She looks about 19 years old, has zero confidence and is very unsure as she prepares to put a gigantic IV into my right forearm. I am still dehydrated so I know my veins will be pretty uncooperative. She inserts the needle and digs around quite a bit; blood is going everywhere. After what seemed like a full minute of torture she aborted the mission and pulled it out. She finds another IV kit and attempts to insert it into the back of my right hand. This round was even worse, she is determined this time to get it and I was getting really tired of the frustrated digging when she decided to stop, like 2 minutes later. She runs off to ask the head nurse for a phlebotomy specialist. The head nurse arrives and asks if she can try on my left forearm. I can tell immediately that she knows what she is doing. It takes her about 5 seconds to place the IV with perfect, practiced precision. I wanted to give her a hug but instead I complimented her profusely for her skills.

She follows up by pulling out a razor and dry-shaving the hair off my abdomen and unexpectedly, the top couple inches of my pubes. Now it reminds me of those super-thin French moustaches just above the lip, and I sorta hope that no one judges me while I’m under anesthesia.

Then a very friendly anesthesiologist arrives to chat and assess my surgical history and past reactions to drugs. He is pleased I’d had a cardiac catheterization in 2007 using versed and fentanyl, and tolerated it well. He was super nice and whiled away the time by asking me lots of sympathetic questions about my heart attack 7-hour wait time in the ER. He had a similar experience with his mother and learned to just go to the hospital in an ambulance from then on.
He asks if I have questions about the procedure or anesthesia, and I do have one concern: is it possible to place the foley catheter after I am “out”? I sure would like to live the rest of my days without ever having to experience a tube shoved up my urethra. He smiles and says yes, that is what they usually do anyway but warns that people are gentler about inserting it when you’re awake and reactive, there are usually less complications afterward. It gives me pause but I opt to be out anyway, and put my full faith in the skills of the person doing it.
He gives me a dose of versed in my IV and I don’t feel like it has done much of anything, but after a while I realize I am noticeably less anxious and probably a good deal more cooperative.

He explains that I will be getting an epidural for pain management since it is very targeted to resolve pain without large doses of opiates. Lots of opiates will depress the colon’s ability to restart, and besides I don’t seem to tolerate such drugs very well. I am allergic to Vicodin and had a nasty experience with morphine during my heart attack. I make them describe every tiny detail about what they are about to do, and they promise they will start with lidocaine which will be like a bee sting, and I won’t feel any of the rest. They have me sit sideways on the bed and put my chin down towards my chest and curl forward. They are happy with my performance and go in with the lidocaine. It is expertly done, more like a mosquito bite that didn’t bother me hardly at all. Then there is some fidgeting around and a little pressure, and we’re in. They curl up the tubing and cover the whole thing with a huge Tagaderm patch.

They lay me back down on the bed, check my comfort level, and it is time to head to surgery right on time: 8:45am. They wheel me into the surgical room and I think I get some small dose of Fentanyl because I feel a bit dizzy, not a LOT dizzy which is what happens when I get a full tank. I remember marveling at the complexity and brightness of the overhead lights, and I wonder aloud if I could get some for my workshop. The anesthesiologist remarks that they probably cost a hundred thousand dollars.

As people enter the room and begin a lighthearted banter, I am somehow participating in it and realize the drugs have put me in full chatty-Cathy mode. Soon, probably to relieve their suffering, they put an oxygen mask on me and pushed the propofol, and I drifted into sleep. I remember thinking how great it would be to get three more hours of sleep after the two-and-a-half I got the night before.

I wake up in unbelievable abdominal pain, and for a moment I think I woke during the middle of the surgery, but through tired slits of eyes that are a huge struggle for me to open, I could see I was in the recovery room and some concerned anesthesiologists are swarming over me. They ask me to put a number to my pain level and I quickly said “seven!” Seven seems like the worst pain imaginable to me at the moment, because 8 would be like having a baby and 9 would be getting shot while trying to pass a kidney stone, a 10 would be outright torture and I would totally reveal the location of the rebel base.

“Seven” probably wasn’t the best answer, because everyone notably relaxes and stops swarming, and so I have to underscore the fact that I was lying, by moan-screaming in pain very loudly. They quickly roll me onto one side, not without my pain level going up one or two notches in the process, and it turns out the epidural medicine is not flowing, so they rip off the Tagaderm, adjust some tubes until the drugs were flowing, and they cover it with a new Tagaderm panel. The drugs immediately begin to reduce the pain to a more tolerable level, but it is about fifteen minutes before I am really comfortable, with unbelievably ZERO-level pain, and I think I fall completely asleep. I remember asking the time but I conk out before I got an answer. It is silly to ask the time when you wake up from surgery, do I have somewhere else I needed to be?

My brain is in stream of consciousness mode and I am very, very fuzzy when I wake up again, I think I was being moved to my room and my wife arrived shortly after. I keep dropping in and out of sleep while nurses hook up EKG wires and attach tubes to my IV(s). I notice they installed a second backup IV in my right arm, and I also notice with a jolt of panic that a big humongous tube is coming out of my penis. I had no idea a catheter would be that big, but luckily unless it gets jiggled it wasn’t causing a lot of discomfort, which I am thankful for.

My wife is happy to see me alive, and I think I have been neglecting her questions in my weird mental state. I think the time is like 3 or 4 pm. A huge amount of time has gone by. I had survived the surgery, knock on wood, and I am growing more focused by the minute. Jen explains the surgeon left a lot more colon than anyone expected, as the 2nd transverse colon tumor was much farther to my right side than CTs and colonoscopy reports indicated. I am not surprised, as my esteem for CT scans is pretty much nonexistent after the one I had in April somehow missed two cancer tumors, one 5cm long and the other 3cm long. And the one I had a couple weeks ago couldn’t find them either. So not only are those bad boys malignant adenocarcinomas, but they can cloak like Klingon Birds of Prey whenever someone aims a scanner at them.

Then suddenly I realize the tumors are gone now. A wave of satisfaction washes over me, and I am pleased with this surgery. Hours later the colorectal surgeon shows up to chat, and I thank him profusely for a job well done. His residents in tow shoot me winks and thumbs-ups for showing gratitude. Do they not get that very much?

I lean my head back to catch some more sleep. I have more gratitude right now than I know what to do with.

My Poopy Vacation Day

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There was a lot of preparation required the day before the surgery. I was not allowed to have food all day. I took a vacation day off work to focus on getting my life together followed by the epic colon cleanout procedure, and marked it on my calendar as One Poopy Day. The cleanout for the colonoscopy was so much better than this colorectal surgery preparation was; for the colonoscopy I was given a nasty grape-flavored colon preparation called Suprep, and it did the job in a few quick hours, no fuss. I sat on the toilet with my tablet and read the news and Reddit, and when it was all over I went to play in my pool league and never had to run urgently to the bathroom.

Poopy Day, on the other hand, was a nightmare. At 2pm I drank 8 oz of clear liquids. At 3pm I took 8 oz of clear liquids, Dulcolax 2 tablets, two Neomycin 500mg tablets, and one Flagyl 500mg tablet. At 4pm I took 8 ounces of clear liquids, 2 Neomycin 500mg tablets and one Flagyl 500mg tablet. At 5pm the fun started. I mixed 238g of Miralax and 64 ounces of Gatorade until dissolved. I had to drink 1 cup of the mixture every 15 minutes until finished. I kept thinking of the Potion of Despair scene in Harry Potter and the Half Blood Prince, where Harry had to feed all the potion to Dumbledore even as he begged to be able to stop. Only where Dumbledore had to undergo a lot of mental suffering, mine was explosively, relentlessly shitty. I think even all the gum I ever swallowed as a kid came gushing out that day. And just in case an entire large bottle of Miralax wasn’t going to do the trick, at 6pm I had to take 2 more Dulcolax. At 7pm, I took 8 ounces of clear liquids again, then 8 ounces more at 8pm. At 9pm I got a break and had to shower with a surgical sponge soaked in smelly, orangey chlorhexidine. My tummy looked as orange as Donald Trump when I was finished. I heard he is a germophobe and realized, maybe the guy just bathes in chlorhexidine! 

At 10pm I took another two 500mg neomycin tablets and one 500mg flagyl tablet. For a gut check, that’s a grand total of 3000mg of neomycin total, and 1500mg of flagyl. A whopping dose of antibiotics. I prayed to God I wasn’t allergic to either of these medicines, it would be my last night’s sleep for sure!

…as though I would be lucky enough to have that. I ran out of bed every 20 minutes to drop a literal shit storm in the bathroom, then after a while 40 minutes, then an hour. I finally fell hard asleep at 2am, and had two and a half hours of sleep when I had to wake up at 4:30am to prepare for surgery. What a long, poopy day!

…as though I would be lucky enough to have that. I ran out of bed every 20 minutes to drop a literal shit storm in the bathroom, then after a while 40 minutes, then an hour. I finally fell hard asleep at 2am, and had two and a half hours of sleep when I had to wake up at 4:30am to prepare for surgery. What a long, poopy day!

At 10pm I took another two 500mg neomycin tablets and one 500mg flagyl tablet. For a gut check, that’s a grand total of 3000mg of neomycin total, and 1500mg of flagyl. A whopping dose of antibiotics. I prayed to God I wasn’t allergic to either of these medicines, it would be my last night’s sleep for sure!

…as though I would be lucky enough to have that. I ran out of bed every 20 minutes to drop a literal shit storm in the bathroom, then after a while 40 minutes, then an hour. I finally fell hard asleep at 2am, and had two and a half hours of sleep when I had to wake up at 4:30am to prepare for surgery. What a long, poopy day!

Surgery Date Moved Up

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I got a call today while eating lunch with several of my friends and since it was from the exchange of the cancer clinic, I took it hoping the background noise and conversation would permit me to hear properly.

The Cancer Center was calling and a spot opened up for an earlier surgery with my chosen colorectal surgeon next Wednesday, September 29, 2021. I told them I would take the opening, and all my lead-up appointments were very quickly rescheduled so that now I had a Pre-Admission Testing workup appointment the next afternoon, and a COVID test scheduled for Monday September 27.

I was very happy to have the date moved up, as I had developed a sort of hatred of my cancer tumors and wanted them out as soon as possible. 

It was nice having lunch with my friends, who range in age from their 20s to their 80s. They were very supportive in listening to me and offering encouragement and advice from their various points on life’s journey. I left the lunch feeling very hopeful and positive about the upcoming surgery, but there were so many details to get put in place just in case the worst should happen. I went back to work and cleaned my office workspace, sorting through papers that needed to be thrown away, and bringing home a box of some of my less important, junky personal effects.  It’s weird to look at your desk and be thinking of the person who might end up having to put all the rest of your effects in a box if you died.

A cheerful thought ain’t it?

Choosing a Colorectal Surgeon

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First thing this morning I had a 7:45am appointment to get blood work done at the Cancer Center closest to my house; it is literally about a mile away. There were at least a hundred people waiting in the lab reception area, so I didn’t get called up until 8:15am and the CBC blood draw went very quickly. There are dozens and dozens of phlebotomist cubicles so despite the crowd, people do get seen very quickly. After the blood draw I rushed to my appointment with the colorectal surgeon, and after filling out several pages of paperwork and getting my vitals checked by the nurse, I soon got to meet the surgeon’s physician assistant and talk about my physical condition, history, and vitals.

First thing this morning I had a 7:45am appointment to get blood work done at the Cancer Center closest to my house; it is literally about a mile away. There were at least a hundred people waiting in the lab reception area, so I didn’t get called up until 8:15am and the CBC blood draw went very quickly. There are dozens and dozens of phlebotomist cubicles so despite the crowd, people do get seen very quickly. After the blood draw I rushed to my appointment with the colorectal surgeon, and after filling out several pages of paperwork and getting my vitals checked by the nurse, I soon got to meet the surgeon’s physician assistant and talk about my physical condition, history, and vitals.

Soon after that meeting, the Chief of Gastrointestinal and Colorectal Surgery for the hospital arrived for our appointment. I was very impressed with his un-rushed, compassionate manner. He took the time to answer dozens of my questions and explained very carefully what surgical procedure he recommended for removing the two cancerous tumors. The procedure he expected is a surgical laparoscopy to perform a partial colectomy, with anastomosis, where the ascending colon (tumor #1), hepatic flexure, transverse colon (tumor #2), and splenic flexure will be removed and the small intestine will be attached to the remaining descending colon. This will result in about 4 or 5 bowel movements a day, and there would be enough descending colon left intact that normal formed bowel movements were possible. The surgery would take about 3 hours, as the anastomosis that joined the small instestine to the large intestine would have to be carefully stapled, stitched, and tested. As a software engineer, I liked the use of the word ‘tested’ because it gave me warm fuzzies that the surgeon was experienced and careful. The surgeon indicated that since the CT scan indicated no evidence of metastasis, enlarged lymph nodes. or obvious spread of cancer to the lymph nodes, it is possible there might be no chemotherapy if the pathologist analyzes the removed tissues and finds no indications of cancer in the lymph nodes. We made tentative plans for a surgery appointment on October 11, 2021, with the understanding that if I decided to go with the other hospital and its surgeon we could cancel that appointment.

Soon after that meeting, the Chief of Gastrointestinal and Colorectal Surgery for the hospital arrived for our appointment. I was very impressed with his un-rushed, compassionate manner. He took the time to answer dozens of my questions and explained very carefully what surgical procedure he recommended for removing the two cancerous tumors. The procedure he expected is a surgical laparoscopy to perform a partial colectomy, with anastomosis, where the ascending colon (tumor #1), hepatic flexure, transverse colon (tumor #2), and splenic flexure will be removed and the small intestine will be attached to the remaining descending colon. This will result in about 4 or 5 bowel movements a day, and there would be enough descending colon left intact that normal formed bowel movements were possible. The surgery would take about 3 hours, as the anastomosis that joined the small instestine to the large intestine would have to be carefully stapled, stitched, and tested. As a software engineer, I liked the use of the word ‘tested’ because it gave me warm fuzzies that the surgeon was experienced and careful. The surgeon indicated that since the CT scan indicated no evidence of metastasis, enlarged lymph nodes. or obvious spread of cancer to the lymph nodes, it is possible there might be no chemotherapy if the pathologist analyzes the removed tissues and finds no indications of cancer in the lymph nodes. We made tentative plans for a surgery appointment on October 11, 2021, with the understanding that if I decided to go with the other hospital and its surgeon we could cancel that appointment.

Next I had my first visit with my chosen oncologist, who was warm and friendly. I had already decided that all my oncology visits and chemotherapy if needed would be performed at the hospital nearest my house, which is also better ranked for cancer care. The appointment was rushed because I spent so much time with the surgeon asking him questions. Next I met the surgeon’s lead nurse and received a sheaf of pre-op instructions, prescriptions, and the like, and we left in a hurry because we were running late for our next appointment, about 40 minutes away.

We had to rush all the way to the other hospital to meet with the colorectal surgeon there. It was a good visit, with a long question-and-answer period where I got to ask questions I didn’t realize had been percolating in my head after speaking to the first surgeon. I was very impressed that this second surgeon sat me on the table and did an examination of my abdomen, finding a hernia at my belly button he said would be easy to fix in the process, and in general leaving me with a very positive impression of him being a capable, hands-on doctor. I was comforted that the second surgeon suggested the same surgical approach as the first, so there was happy agreement on that point.

The thing that really gave me pause was a bit of a cavalier attitude on the part of the second doctor. He was young and exuberantly confident in his skills, and said the surgery would take about 90 minutes, and that time estimate was half as long as the first surgeon’s estimate. This made me unsure as to whether a quicker surgery was better and less risky, or whether it would be more slapdash.

The thing that really gave me pause was a bit of a cavalier attitude on the part of the second doctor. He was young and exuberantly confident in his skills, and said the surgery would take about 90 minutes, and that time estimate was half as long as the first surgeon’s estimate. This made me unsure as to whether a quicker surgery was better and less risky, or whether it would be more slapdash.</p>

We were sent into the scheduler’s office after that, and by a funny coincidence their earliest opportunity to schedule me was also October 11. Since their surgical schedule seemed less tentative than the first hospital’s, I didn’t make the appointment so that I would have time to process all the information I took in that day, and decide which place I should choose to have the surgery.

Somehow the Lovin’ Spoonful song “Did You Ever Have to Make up Your Mind?” (link here) kept playing in my head while I tried to make a decision. Dumb brain jukebox.

By the time I climbed into bed I decided to go with the surgeon I felt was more experienced, at the first hospital, and worked in the same clinic as my oncologist, so lab work, radiology, pathology, and medical records would be more readily available to all the people involved. I ended up having a strong positive feeling about this decision moving forward.