Monday, April 5, 2010

Why Me? Why Not Me? Part Seven

By Alison

This is part 7 of Alison's account of her diagnosis and treatment of bladder cancer.


So I finished my last treatment with BCG (tuberculosis vaccine instilled directly into my bladder). I waited a month, and a couple days ago I went to the doctor again for a look-see and the pronouncement of my immediate fate. If no cancer, I can wait for as long as it takes for the cancer to return, because it WILL return.

“The cat came back, the very next day,
they thought it was a goner but
the cat came back, ‘cuz it couldn’t stay away!”

Or, if there is still cancer, there’s no more waiting because the bladder comes out.

The cat came back.

There was still cancer in there.

I think I saw it before the doc did. The camera panned over the “good,” white and pink vascularized wall of the bladder; then it opened up on the panorama I remembered so well. There were pinky orangey honeycomb-like flowers, colorless moss on gray mounds, and a bright red spot. It was all just in a different place than before. The original tumor(s) were replaced by what he told me was a scar, a smoother place than the surrounding tissue. I also saw two very odd yellowish nodules sticking up like, well, like nipples; they were evidence of the tuberculosis treatment! Like little encapsulated pieces of TB that my immune system had walled safely off. Alas, we cannot do the BCG treatment again. It did not work the first time.

The doctor says first he will take out this new tumor in minor day surgery, and he wants to take a look up at my kidney on the opposite side of the wall of cancer. It’s like this: There are two small openings into your bladder kind of up high, one from each kidney (the tube between is called a ureter). As your bladder is flat when it’s empty, the stream of urine from each ureter “splashes on” the opposite wall. If cancer is just on one side it might indicate problems higher up, in the “upper urinary tract.” Anyway, he is going to do some kind of kidney X-ray when I am in the OR. Later, I don’t know when but soon, there will be major surgery to remove the bladder and some other organs, and construct another way for me to urinate.

*Sigh.* I felt pretty bummed as I drove home, and I wanted to talk to my sister but I couldn’t reach her. I kind of didn’t know what to think. After all, I really was no closer to death than I was an hour before; and I remember at the beginning of all this asking the doctor if we couldn’t skip all this treatment, watching, waiting, scanning, scoping, etc., and just take the sucker out.

I told him I did want that now. He was saying something about saving maybe this or that part, and I said no. “Just take it all out, please.”

See, I work with patients with HIV/AIDS. Most are well, but some are very sick. One of my favorites, I’ll call him Dan, is very sick. I care about him so much because he is a brave activist who has taken on ministers in his city because they 1) give to faraway missions rather than troubles right at home, and 2) were heartless to gays during the worst of the HIV/AIDS epidemic, and some still are. You know, preaching that AIDS is God’s punishment for being sinful, gayness is always sinful, celibacy is the only answer if you can’t be miraculously changed by religious “therapy,” etc. My patient Dan went right up to some of these ministers and confronted them to their faces.

Miraculously, and I mean that, almost all wanted to sit down with him and hear more. Really, they wanted to LISTEN. So Dan and some of his friends met regularly at an informal restaurant with these guys to talk about sexuality, and God, and what the Bible says before and after Jesus. It has been an amazing growing experience, I think for all (but mostly for the ministers). The ministers said they were sorry for the way they had been, the way they had been taught, the way they had taught others.

Anyway, Dan got some cancer, and it was treated with radiation and chemo-therapy. And he almost died because he lost so much weight and of course he lost all his hair and looked half-dead. He had to go to a place “like an old folk’s home” to recover and get his strength back. This is from the treatment, mind you, not the disease.

The last time I saw him he was much, much better, had gained a lot of the weight back, hair was back, but his color was still very pale. He told me the first scan post-treatment showed no cancer, but the next showed it was back, in his lungs and liver. Poor Dan has to decide now if he will just “go gently into that good night” with hospice and palliative care, or if he will do as his partner wishes and “try everything,” even though it about killed him last time. A prayer for Dan if you please . . . .

So you see I may seem positive but cancers are different, and do different things, and I am not in Dan’s situation, at least not for a long time yet. On the other hand, I am not getting off easy myself, with major surgery and learning a whole new lifestyle for something I have been doing since before I was born: letting liquid waste out easily.

I called two good friends and we went out for a sumptuous dinner and they plied me with wine. We eventually got so we laughed. I am blessed, blessed in my friends.

To be continued….

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