Who Are the People in Your Neighborhood?

When I started treatment, my sister suggested I write a journal of my experiences. I didn’t, because I couldn’t imagine wanting to keep a record of such an awful experience. Having survived it, and perhaps forgetting some of the really awful stuff, I wish I did keep a journal. The people I met were the best part of dealing with cancer, and I wish I kept some notes about them. These are some of the fellow travelers I remember most…

Blowing Chow

My first go round with chemo was outpatient at Hartford Hospital in Connecticut. I would normally be in a room with one or two people. For some reason, almost all of them were women. One was being treated for breast cancer that had spread to her bones. She had a cell phone, which was much less common nine years ago. She had kids, I think teenagers, with whom she talked on the cell phone. She had a white collar job, and told us that six years earlier, she was told by an oncologist she had six month to live. With my first chemo combo, I had chemo a total of 15 times. She was the only one who threw up while getting chemo that I saw. I heard it coming, and looked away. She apologized, but what was there to apologize for? I met another woman who also had a very tough time with nausea. She said she tried every drug available. She tried Marinol, which is like marijuana in a pill. She said she didn’t like it, because it made her high all day long (I thought to myself, what’s wrong with that?). Her remedy was smoking pot, which only made her high temporarily, I guess. She said she smoked before every meal. She said it calmed her stomach and made her hungry. She had to explain to her kids, who were in high school,  that pot really isn’t something you should use, but she felt she had to.

Oh Woe Is Me!

The very first time I came in for chemo, I shared a room with a guy in his 60’s (I was 34 at the time). All he could talk about was how his life fell apart after he retired (starting with his health). I was in no mood to hear this guy piss and moan about the fact he only had 60 or so good years before things fell apart. I told him my age, I was stage IVB Hodgkin’s lymphoma, and doubted I would ever see 60. That made him shut up, after he told me how bad it was to have stage IV lymphoma. He was a real gem.

It’s Not Just the Cancer

For two or three days I shared a room with a woman who I guess was in her 70’s. She needed a wheelchair to get around. She had non-Hodgkins lymphoma. She had twin daughters, both of whom were nurses, who would come in with her. Not only did she have cancer, and need a wheelchair to get around, but had a husband who was a stroke survivor. One of the daughters told me that as a result of the stroke, the husband underwent a radical personality change, and he was verbally abusive to his wife. I guess she didn’t have enough to deal with.

A Study in Contrasts

After my first relapse, I had two rounds of inpatient chemo at Hartford Hospital. During round one, I had a roommate with a bulge on the right side of his neck the size of a peach. It was this ugly, unnatural, greenish/pinkish color. He was always going in and out of the room (I was by the door). He was a recovered heroin user, on methadone, who’d go outside to smoke. During one of his smoke breaks, his sister overheard a couple nurses ask each other where he was, one wondered aloud if he was out trying to score some dope. This enraged the sister, who lit into the nursing supervisor about this, while the two were in my room. I asked them nicely to take it outside. They apologized and went out into the hall. If roommate number one wasn’t an upstanding citizen, roommate for round number two was. He was in a special bed to prevent bed sores. He had pneumonia. He had paraplegia. He was in his 60’s. Lung cancer had spread to his spine. The tumor grew so much, it crushed his spinal cord, leaving him partially paralyzed. He worked 30 or so years at a big, local manufacturer, made his way up to middle management and retired to enjoy his golden years. About eight months after retirement, he had really bad back pain (which he thought was caused by moving furniture). Cancer was the back pain and it spread throughout his bones. When I talked to him, he was completely unemotional and matter-of-fact. It was like we were talking about the weather. Doctors estimated he might live another year and it looked like he was trying to make the best of it. His situation really struck me. He worked all those years, did all the right things, played by the rules and his retirement was less than golden. I asked one of my doctors (one of my favorite doctors, Peter Tutschka, who’d been treating cancer patients for 30 or so years) what were the saddest cases he’d dealt with. He told me it was the children who were terminally ill, and the older adults who worked, scrimped and saved all their lives for a retirement that never came.

Time is Not On My Side

Also after relapse number one, I was treated at the Yale Cancer Center for high dose chemo and an autologous stem cell transplant. Unlike Hartford Hospital, in which chemo patients were treated in several small rooms, Yale had everyone in one big room. I remember looking around, seeing men and women, different ages and colors, probably from all different walks of life, stuck in the same place doing the same thing, getting treated for cancer. I thought that all of us should be doing something better. Instead of spending days in the friendly, fluorescent bulbed, anti-septic smelling chemo ward, we should be working. Or travelling. Or spending time with family. Or going to school. Doing something, anything, other than spending another day at the cancer center. You hear a lot about the cost of cancer treatment, how often it fails, the side effects of treatment. You don’t hear much about how much time cancer, and its treatment, sucks out of your life (and the lives of your loved ones). Days, weeks, months, years… time not spend something else. I had an allogeneic bone marrow transplant at Tufts Medical Center in Boston. Down the hall, in a corner room, was a woman whose transplant didn’t go so well. She had graft vs. host disease so bad they couldn’t discharge her. She’d been in the hospital about six months. I was in the hospital for about three weeks, and was ready to jump out the window. I can’t imagine living in a hospital with no end in sight. I also can’t imagine what her hospital bill must’ve been. Who have been your fellow travelers on the cancer treatment trail?