My Journey with Colorectal Cancer
Updated: Jan 24, 2020
By David Van Etten:
My worst day on Earth was Sunday, April 28. That was the day I dropped down to 125 pounds from a pre-colorectal surgery weight of 195 pounds, fell twice following dizzy/blackout spells, and was boarded into another ambulance. Five days later, I was discharged at 145 pounds, strong as an ox with sweet, sweet water (and water weight) coursing through my body. I had pneumonia, as detected by a spot on my lungs on a CT scan. I was extremely glad it wasn’t “Stage 4” cancer that migrated from guts to lung. They performed a lung biopsy to confirm, which involved sticking a needle into my chest while I was in the CT scan machine so that they could guide the needle accurately by watching on screen. I watched too, awake but numbed.
I completed chemo, 8 rounds out of 12 planned rounds—I was knocked out in the 8th round, when I fell to 125 pounds. I have a 47% chance of the cancer returning, marginally higher than the 40% chance of return that would have applied if I finished all 12 rounds. My flirtation with mortality trumped my zeal to complete those final rounds. I anticipate reverse surgery to remove my stoma and my chest port in the weeks ahead. My surgeon says I will initially struggle to get the “butt pouch” (fashioned by him from my small intestine) to function effectively. Thus, I have a risk of the permanent return of the ostomy bag as well. I affectionately named my stoma Stephen Daedalus (after the beloved yet pained and brooding Joyce character), and less-affectionately named the cancer the “pink monster” (hat tip, Daisy Joy Van Etten) or Sergio Ramos, the Real Madrid player who injured my beloved Liverpool’s Mohammed Salah in the Champions League Finals. In all candor, I will miss neither and hope for no return.
My cancer was caused by a double genetic mutation called MUTYH or MAPS syndrome, somewhat like my ginger hair but deadly; one mutation from mom and one mutation from dad. My body loves to make cancerous polyps. I had a near 100% chance of getting colorectal cancer, as well as a 30% chance of getting duodenum cancer due to genetic mutation. I suspect my cousin Steve had the same double mutation, as he died of duodenum cancer at age 35. I miss Steve a great deal, especially during this sickness.
What follows are some public posts I made over recent months related to my colorectal cancer. My mom beat colon cancer when she was just a handful of years older than me. She taught me that cheeriness is strength, and that you can’t do it alone. I hope you find that these posts give you an opening to an experience that is strange and painful and beautiful, something that I hope with over-filled heart none of you ever needs to experience. All my love to those who cast attention on these words.
September 2, 2018
I recently learned that I have colon cancer. Surgery will follow in the days ahead. I’m ready to fight this “pink monster,” to borrow Daisy’s spectral slang. My mom beat the damned thing 20 years ago, and she showed me how cheeriness is strength. Keep us in your loving prayers, as Susy’s caretaker role dilates, and as I fight in my foxhole (every pun intended). ❤️❤️❤️
October 4, 2018
I’m posting naked before the world again. I have cancer surgery on October 17th. Full colon and rectum removal. I’m exhausted. I’m a little scared. Pray for me (or do the fungible equivalent). In fact, come pray with me at Saint Patrick’s in West Oakland this Sunday at 10:30 a.m. We can do the “suscipe” together. Lord, take it all, it’s Thine. Thanks for giving me your strength, my loves. ❤️
October 26, 2018
I'm home today. My surgery was successful. I am so grateful to the team that fixed me, including the artist Dr. McGuinness, and the team that cared for me in recovery, including these 2 pictured. Tess on the right taught me how to change my "outputs" and find independence. Christina on the left was my weekday nurse, and she healed me. I am grateful for the friendships I made with other patients, including Susanne, who had a very comparable colon surgery. She started me on the talking cure. I am unspeakably grateful to all of you who loved me and showered me with your generosity and funds and meals and gifts and flowers and cards and prayers and posts and sat with me through wild flights of weeping and just watched the game and shot the breeze and held my hand before the long nights.
I will need chemo. The biopsy results showed Stage 3 cancer. I will keep fighting. Also bad was this past Saturday's dark night of the soul when the suffering was unbearable, during my first attempted transition from self-managed drip to nurse-managed pills. Also bad were the anxiety attacks where emotion and delusion stormed beyond reason.
I have a temporary ostomy bag. I'm sure you will soon see me showing it off while wearing a bikini. But it's humbling, and it's fucking gross when it leaks warm bowels all over your bed and body. Also ugly is the smell of food. Maybe ugliest is how I have mistreated those closest to me, and my nurses. It's difficult when you're a pleaser and your personal golden rule is to be lovable, and you are filled with such pettiness. I know it's okay, and it's sort of an honor for my loved ones to be today's punching bag. But it sucks.
Allow a moment of bravado to this old varsity poet, even if I am tempting hubris. I beat this thing, at least the first part. I am the attacking midfielder for the Fuck Cancer Football Club. My soul pickled in vinegar and grew seven-fold. I was nothing but a rut on the face of Samuel Beckett in the dark. But I earned 10 buckeye stickers on the back of my freshman helmet. I am a long-striding man walking the earth in Rakim's third verse. I fucking did it.
April 29, 2019
This San Benito medal, given to me off her neck by my parents’ sweet house cleaner, Maria, when she learned of my cancer, is perhaps the creepiest and awesomest thing I’ve ever hung on my neck. It’s been worn for a thousand years by those needing a “devil-chasing medal.” It honors Saint Benedict of Nursia (died 547), who was later elevated by Pope Paul VI in 1964 to be patron protector of Europe. It’s filled with tiny isolated letters that sort of acronymically reference Benedict’s famous words against evil and Satan. Pope Leo IX (died 1054) contended that the medal saved him from a snake bite. Saint Vincent de Paul (died 1660) had all of his Sisters of Charity wear the medal attached to their rosary beads. I am quietly wearing it to protect me from this shadow of cancer. So far, so good.
May 2, 2019
Cry Havoc and Let Slip the Dogs of War
I need to unpack this a little:
My wedding ring stopped fitting months ago due to weight loss from 195 lbs to
125 lbs at its lowest. My wife, Susy, wanted to get me a signet ring to wear in the meantime.
Ever since a spring break trip to Guatemala during 3L year (in law school), I’ve been captured by the idea that my spirit animal is a stray dog, like the dogs you often find in the streets in Guatemala.
I had a vivid dream during the early rounds of chemo. I would build a fire and fall asleep next to it. It somehow made me feel less like my insides were burning from the good poison. One night next to the fire, I dreamt we were at the jumpy house spot we went to for our daughter Daisy’s December birthday, Bouncefarm. I saw all the kids climbing up the tallest jumpy slide and followed. At the top of the slide, there was an open passage to a gathering inside the slide, where an enormous campfire was aflame. I moved down into the passage and soon found myself lying down next to the campfire, and further, I realized I was a large dog. I looked at the gathering and realized it was all my loved ones. I looked across the fire and locked eyes with one of Susy’s best friends, Maya. Her face seemed to be covered with a Byzantine network of tattoos. But upon further look, I saw that it was warpaint and realized I was the war dog for this army of loved ones. Someone signaled me to initiate the evening, and I ran off into the night, leading this Hosting of the Sidhe (Yeats reference) into the terrors of the unknown. And the army of loved ones followed close behind. We were more terrifying than the night’s terrors.
The signet ring that Susy found has a war dog as its sigil, so to speak (I know, too much Game of Thrones). It’s inscribed with Marc Antony’s instructions found in Shakespeare, when he realized killing Julius Caesar would unleash anarchy: “Cry havoc and let slip the dogs of war.” It’s perfect and means so much to me. This has been the fight we've been fighting.
And that’s how Bob’s your uncle.