Last Monday, when I was so busy looking for my cell phone, i sat in the waiting room near a woman I knew. We had a conversation, one that we had had once before. I haven’t attempted to write this before now because I didn’t know if I could make sense of what I was thinking. I still don’t.
I don’t remember this woman’s name, but she and I were two of the three people chosen for a clinical trial last January at MD Anderson. She had had CTCL far longer than I, although her blood was not nearly involved as mine.
Her skin was far more involved than mine, however. She wore a knit cap that she kept pulled down low over her face. She told me the cancer had caused her to lose her hair except for a couple of small patches. In addition, she had a couple of noticeable tumors on her face. One of her treatments had caused a heart attack. One of the things I had noticed about her was that although she had clearly suffered, she was still very conscious of her appearance. It seemed silly to be so concerned about appearance at such a serious time, but I understood perfectly. I was the same way.
Towards the end of the trial, we met again. We both assumed we were ending our time on the trial (as things played out, it was the end of the trial for her. I had three more months of this drug).
We talked about what was next for us. Neither of us really knew specifics. She thought that she would go back to treatments she had already done. She hoped for a few good momnths here, a few good months there. Our doctor had talked to her about a bone marrow transplant, but she wouldn’t consider it.
I told her that although I didn’t know how I was going to get there, I was hoping for a bone marrow transplant. At the time I didn’t even know if I had a matched donor. I told her it was the only real answer for me. I wanted a life without cancer and I would risk everything to get. She wished me the best of luck and said a BMT just wasn’t practical for her. It demanded a care giver for at least 100 days and all her family had jobs, families, commitments of their own. It just wasn’t possible for her.
I was surprised at her answer. A BMT is the only real answer to surviving this cancer and she was sayiong she couldn’t possibly, that it might inconvenience her family? I stopped short of saying anything further. Maybe there was more involved than just being surrounded by an insensitive family.
Fast forward to our meeting last week. She was sitting next to what appeared to be her daughter and grand-daughter. She was obviously suffering tremendously. She confirmed that she wasn’t doing all that well. The cancer had spread to her blood and she was in a lot of pain. She was hoping Dr. Duvic had an answer for her. What wasn’t being said was that maybe there wouldn’t be an answer.
I briefly told her that I was doing radiation prior to doing transplant and that although I was already going through a fair amount of pain, the transplant would make it all worth it.
She went back to the answer she had given me three and a half months ago – her family didn’t have the time to give her 100 days of care giving. The woman who looked like her daughter didn’t say anything. She didn’t come sit next to me and ask for specifics about how this was working for me. She didn’t do anything.
There really wasn’t much left to talk about. This poor woman, who was suffering tremendously (I know because ‘been there done that’) had, to my mind, run up the white flag. She was giving up and just hoping that there might be something to help her with the pain.
In retrospect, I may have been unfair in my conclusion. Maybe there was something more than just an uncaring family. Maybe different circumstances dictate different answers. Maybe.
Or maybe not. This woman hasn’t even bothered to see if she has any matched donors. Her doctor is recommending a transplant as her best option. And her answer is no.
If there are indeed extenuating circumstances here . . . well, the hospital is only a few miles from Tom DeLay’s congressional district. Do something, Tom. Or do some lives deserve a spotlight and others don’t.
What’s the old saying – If you try, you might fail, but if you don’t try, you’ll definitely fail.
So . . . I guess I’ll try.
Rick
6/20/05