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