For my 23rd birthday, along with some shirts and books and other stuff, I got Hodgkin's disease.
The tumor was discovered after my roommate had been gone for a long housesitting assignment. She came home, took one look at me and said: "What the hell is wrong with your neck?" The lump had grown so slowly that I hadn't noticed it. In true Pollyanna form, I put ice on it and presumed it would go away. If it didn't hurt, then it couldn't be anything bad.
It didn't go away.
I made an appointment with my general practitioner, and she referred me to an ENT surgeon. He ordered a multitude of tests.
First there was the CT Scan. A dark room and enclosed in a narrow cylinder for two hours. The technician, safely in another room, repeated a monotone mantra: "Breathe. Don't Breathe. Click! Breathe. Don't Breathe. Click!"
I was scheduled for surgery: remove the tumor, remove the spleen, remove part of the liver, remove multiple lymph nodes.
I had never been in the hospital before this exploratory surgery. I had no idea what to expect.
I was wheeled into the operating room and hooked up to an IV and then strapped to the narrow operating table. The anesthesiologist worked his magic. The lights started breathing and then I woke up in my hospital room.
My abdomen had been ripped open, and I had never experienced such pain. Women who had had the same operation would later tell me that this surgery was more painful than childbirth.
I got out of the hospital after a week.
I consider myself fortunate that I did not have to have chemotherapy, although 14 weeks of radiation was not easy. Five days a week I would drive myself 25 miles for a three-minute appointment at a radiation clinic. The clinic was in the basement, and the complete lack of windows and natural light made me and my fellow patients feel ashamed. We were ugly and sickly and had to be hidden from other people.
Most of us were outpatient, but there were some wheeled in from a hospital. They were ghastly. No matter what age they were, they looked like old people, with faces like pale tissue paper. They never talked. Their attendants, mostly high school volunteers, never talked. Sometimes one of them would stop showing up and we all knew why, but we didn't say anything.
It's better now, but cancer had a huge stigma back then. It was a forbidden topic except in close family circles. I had friends abandon me because they didn't want to be around someone who reminded them so clearly of their own mortality. Friends my age needed to keep their own beliefs in a ghostly invincibility. Relatives would call and if I answered the phone they would immediately ask to speak to my parents and then they would ask my parents about me.
Eventually the radiation treatments ended and my weekly doctor appointments got stretched out like canvas into months.
I was terrified. Previously I had doctors and nurses and treatments to deal with this, and now I was meant to do the healing myself?
Five years passed, and then I began to relax. I considered myself Hodgkin's-free and have remained so to this day.
But not cancer-free.
Three weeks before my wedding in 1997, I was diagnosed with what is called Gastric MALT Lymphoma. There were malignant polyps all over my colon. These had to be removed by a claw that pinched the polyp and the surrounding tissue and pulled them off the intestinal lining. I could feel them tugging around in there.
The good news is that this particular type of lymphoma is slow-growing. The bad news is that this particular type of lymphoma is slow-growing. There was no treatment given except frequent removal of polyps over the course of six years. This meant that I continued to "have" cancer for six years. The sole treatment was "wait and see," which over 72 months is a crazy-making experience. The thought of it being inside of me was horrible. Sometimes I could even imagine that I could feel polyps growing. Every time before a removal appointment I would pray that they did not find anything.
Eventually they did not: one time everything was clear. And then two times.
Last year I noticed what felt like rough scabs on my head that wouldn't heal or go away. As I am now paranoid about any unusual symptoms, I went in to my general doctor quickly. He picked through my hair like a baboon searching for nits and made worrisome grunts. He asked if he could excuse himself to fetch a dermatologist and right then I knew. The dermatologist confirmed it, and I added multiple skin cancers to my portfolio.
A local hospital has a support group for cancer survivors. It's held, of course, in the basement. I don't go anymore, but I did for a long time after treatment.
The group had no agenda — people just came and talked about whatever they wanted to. Some people came to every meeting and some would show up in a burst of two to three meetings and then vanish for a few months. There was a wide variety of people in the group. The group was free, so people from all walks of life came into the dark room to open their souls.
Ed was one of the regulars. He showed up early to set up the chairs in the room, which was normally used to store whiteboards and projectors for the various meeting rooms upstairs.
Ed was a strong leader for the group, but he saw cancer as a competition. He would compare his symptoms to anyone else's and then make declarations about how much worse his cancer was than theirs. Granted, his cancer had been caught relatively late, but even those people with highly treatable cancers have the right to feel terrified and violated.
And ultimately that's what cancer is: a terrifying violation. How dare my own body turn against me like this? If I had contracted a disease from an external source like bacteria or a virus, there would be something to shake my fist at. But cancer spontaneously grows from within. It's a betrayal. It's unfair. It's not to be tolerated.
None of my experiences prepared me for my father's subsequent cancer. Or my wife's.
I fully expect to have future episodes. Like a phoenix, it will rise again. My lymph and immune systems obviously don't work well, and I have no right to expect them to do so in the future. And yet there are positives in something as horrendous as cancer. I met some wonderful people throughout the experience. People I never would have met had we not shared an inability to split cells correctly.
No matter how many times the phoenix rises, I will continue to slay it.
Breathe. Don’t Breathe. Click!
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