Friday, July 2, 2010

Why Me? Why Not Me? Part 8

This is the latest in Alison's adventures in treatment for bladder cancer.


VIII. Reprieve

I know it has been many a long week since I have added to this account. I found out the cancer had not been vanquished by the BCG treatments on April 1 (and wrote about it in installment VII); then I had day surgery on April 9 to remove the tumor (again) and look at my kidney. It was as before, the lying there, the IV insertion, the waiting, the wheeling, the waiting. I had spinal anaesthesia again so I could see what was going on but I was also very sleepy from a sedative, Versed probably. I was much more out of it than the time before.

Then, after the surgery, the resident told me that they had washed my bladder out with some chemotherapy. Real chemotherapy, the kind that makes your hair fall out and makes you throw up and get weak and all that. Except, putting it inside an intact bladder – “intravesically” – means that none of those awful side effects happen. That bladder is a tough little softball, that’s for sure. They put it in, let it slosh around for awhile, an hour maybe, then I guess the next time I went to the bathroom it came out. Or maybe they took it out with a tube, I don’t know.

I also didn’t know they were going to do this.

Odd. I didn’t like that they didn’t tell me this was going to happen. Looking back and reading over my account here, I think maybe my doctor thought I might argue with him (“Just take the sucker out,”) and he knew best, so he didn’t bother to tell me. Maybe he just didn’t want the agita, as the Italians and Spanish say. (Agita = literally heartburn, figuratively hassle, fuss; pronounced AH-jituh. A great word to have handy.)

I wonder if I would have instructed him NOT to give me chemotherapy? I don’t think I would have. I think I likely would have said, oh well, okay, maybe it’s worth a shot. I had read about it earlier and remembered the statistics weren’t so good (fewer than 20% respond, something like that), but I was an exception before with the BCG so maybe I would be on the good side of the statistics this time. I guess I understand why he didn’t tell me, maybe, but I still think he should have.

Thing is, I am not always a good patient. In fact, quite often I am not a “good patient.” I question, I research, I have opinions. I don’t always do what I’m told, or do it as fast as they want me to. It’s hard because I really want a doctor I like and am not afraid to go see, who won’t scold me if I don’t agree or don’t agree right away. Sometimes I think I know more than the average person; certainly when it comes to psych issues [my field] I know MUCH more than the average M.D. and some would say I know more than a lot of psychiatrists. Well I used to, anyway, back when I was working in the field. So I have a tendency to go through doctors until I find one I can stand who seems to be able to stand me. I have had no problems I know of with my cancer doc, but maybe he had a problem with me. He is a very charming sort of fellow and easily the kind of person who would sidestep conflict and rather beg forgiveness than ask permission.

Anyway. I had this chemotherapy, called mitomycin, actually a form of intense, toxic antibiotic. No reaction to it that I noticed. I went home catheter-free and was instructed to call with problems. In a few days I did have some burning sensations and bleeding, so they gave me an antibiotic to take for a few days, and it cleared up.

And then, dear reader, I had to wait for 8 weeks. Eight weeks! From April 9 to June 10! And THAT is why I have not been writing. There has been nothing to say. This cancer business involves a lot of waiting.

Oh, I got invited to this cancer support group for women – women because it started out a few years ago as a breast cancer group. It is very very nice. One of the things we talked about was if there comes a day when you feel safe from cancer. The consensus was no: “The day you know you are not going to die of cancer is the day the bus runs you over.” So the wait is life-long, if you decide to focus on it, which I mostly have not. People ask me solicitously how I am, and then I remember I have cancer. (If that sounds like denial, so be it!)

So June 10 finally came and I went in again for another cystoscopy in the office. And this time, THIS time, I had a nice clean white bladder all over. With veins and arteries visible in the white walls, but no flowers, no seaweed, no velvety rocks. It was quite a sight to see. My doctor did point out a small red bump at the top, kind of pinkish really, and I said, “What does that look like to you?” He said, “It looks like a flat tumor.” I had read enough to know that would not be good, but – meh. I had a nice clean bladder compared to before. He scheduled me for one more surgery, to take biopsies all over my bladder’s inner surface (top, bottom, right, left, front, back) and special attention to the pink bump, for the following week.

To be continued…..

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