Monday, April 8, 2013

Thoughts on chemotherapy

What the back of my head looks like
these days. Wavy gravy. 
It's safe to say that the recent news of new lung nodules sent me into something of a tailspin on the theme of dying, which is very different from the apparently easier-to-take theme of death.

I talked to Jules yesterday about chemotherapy. She pointed out that some, if not most, of the 'miracle stories' about overcoming the odds with cancer were about people who had done chemotherapy. Her relative who lived for 30 years with an 18 month prognosis was on and off chemotherapy the whole time, with periods of remission or stabilization. Somehow I did not know this, about her relative or others. What about the guy in New Orleans in the Voodoo museum. He had also lived 30 or so years with a brain tumor. Had he done chemotherapy? I assumed not.

BTW Elisabeth Kubler-Ross advises doctors not to tell their patients how long they are expected to live. Come to think of it, my doctors have never volunteered life expectancy numbers. They gave them reluctantly and only when pressed (by me.)

My fears or reluctance about chemotherapy are many. One has been that it will decrease my life quality, possibly permanently (for example, if the neuropathy gets worse), and do nothing to prolong my life. And Dr. N. herself has said many times that she had no idea what would work, and that she would understand if I didn't want to do it. Ending up in the cliche cancer bed, dying, wrecked by chemotherapy. I'm very aware these days of various kinds of medical interventions that don't help, that do not consider quality of life, that cause suffering. Part of it, too, is just the feeling I get when I think about periodically injecting super toxic chemicals directly into my bloodstream.

Rock and roll art created when I was 16, 
encountered while on an anti-dust rampage.
While it's also true that the other things I'm doing are probably slowing the rate of growth, chemotherapy seems the only hope for actually shrinking the nodules and prolonging my life. I remember what Dr. Block told me, that the  disease was at a stage where any kind of treatment would need to include chemotherapy.

Perhaps I will agree to do it for three months. Perhaps I will ask Dr. N. about choosing the drug that has the lowest instance of neuropathy. First let's see what the PET scan this week shows.

She said there was no clear data as to whether starting it earlier gives better results. The only thing I know now is that I want to start before I need an oxygen tank.

1 comment:

  1. You were one talented 16 year-old. This does not surprise me.