Portland, Oregon's Cancer Survivorship and Bodywork Zine by Compassion Arts PDX, LLC
1991. January 4th. The year of the Gulf War. As rockets screamed over Baghdad and we watched war on television in real-time for the first time, I was at Providence Medical Center in Portland, Oregon. My girlfriend was recovering from surgery. A medulloblastoma.
I was a senior in high school. Lori was a year ahead. I barely graduated, at the hospital by her side as often as I could be.
They had talked about an experimental procedure, allowing chemicals going through the blood brain barrier. The family elected to go with traditional surgery. Lori was never quite the same.
And, then I got sick.
I had been sick for awhile, but was too ashamed to go see a doctor for a long time. I was 17; young, dumb and inexperienced. I finally went to see my family doctor and showed him the sore at the head of my penis.
That started a six month quest. I went to specialist after specialist. They thought it was an STD. They thought I was self-mutilating. They had me take Rorschach tests and talk to psychologists. No one was figuring it out.
Once a month, all the mystery cases go up the hill to OHSU, gathering in one ward. All the specialists come around and take a look. I stumped all the jocks.
I turned 18 in June. Then, two weeks after my high school graduation, I was admitted to OHSU. After two weeks they knew it was cancer. It took them another week to narrow it down and come up with a treatment plan.
Diffuse, large-cell, lymphoblastic lymphoma. Never gonna forget that diagnosis.
I started chemotherapy in the hospital. It turned my urine bright, neon pink and had me retching for days. I lost all my hair. I was young and healthy, other than the cancer, so they dosed me up good. They said if they had not caught the cancer, I would have been dead by February.
Chemo was challenging on my body. For years I could only walk a couple of blocks without my calves burning. For a time I had lost strength in my thumbs. I’d strum a guitar and the pick would fall from my fingers. Docs seldom talk about the long-term side-effects. I’m still challenged with irritable bowel syndrome, though it’s managed fairly well in the past couple of years.
They said the cancer was rare. Really rare. Though, it’s only been recently that I truly knew how rare the cancer was.
I have a friend at Northwest Cancer Specialists. Tracy has read my case study and used me in part of her thesis on survivorship. She’s given me a bit of insight.
I was the ninth documented case. I was the first to live beyond twenty-six months.
So… First of Nine. It’s not a Borg designation.
I recently asked my friend’s son if he could figure out the statistics of the cancer rarity. Ziggy does math to relax. Brilliant young man. You can see one of his emotive wire sculptures in the corner of my massage office. He said my case was one over the number of cases that have ever been diagnosed by a doctor in all of history.
As I write, it’s December 26th, 2011. Today marks twenty years since my last chemotherapy treatment.
It’s taken a long while to craft myself into someone worthy of this lifetime. To survive cancer and to begin truly thriving in life, I had to face myself. I continue to strive to learn and grow from every experience with compassion, empathy and honesty, while embracing the wonder and beauty of life.
I’ve come to find meaning; I have a job to do here in this incarnation. I work with folks living with cancer. I work with survivors. I’m going to continue to share my music. I’m going to continue to share my photography. I’m going to continue to share my bodywork. Cuz, this life is worth living fully.
Here’s a quick tune recorded on my back deck with the iPad 2, inspired by the movie The Thin Red Line.
The tune is called Prelude. Dig it!