Friday, January 29, 2010

Why Me? Why Not Me? Part Two

Here is Alison's second installment in her cancer log. Note: Alison is still being treated. This is a work in progress.

Cystoscopy Art
by Alison

So I got the news that my urine had cancer cells in it, which meant my bladder has cancer cells in it too. Next up: getting a cystoscopy with the Urologist and then further workups, lab work, surgery, treatment plan, next-few-years-mapped-out to contain cancer (that last word is meant to be whispered. Are you old enough to remember when it was always whispered?).

In other words, I have entered Cancerland. Appointments, scans, biopsies, heebie-jeebies, worries, and all the rest that so many others have written about so cogently and beautifully. (For those interested, I can pull together a bibliography of a few of the best stories of illness. It is sometimes considered a new genre of autobiography —“the illness narrative.”)

I realized that I was going to have to tell a lot of people. In my family, the original rule was to not tell anybody anything bad about anyone else’s health, so no one would worry. Unduly. Yet the rule was so pervasive that even when people should have been told things, they were not. This is probably still going on to a degree. Old habits die hard. “I won’t tell anybody until there is something important to say.”

To break this generational rule, I started emailing people and calling them and saying “I have some news.” Some folks knew I was pursuing this symptom thing, and I only had to let them know that the lab had hit pay dirt. So to speak.

Others, it was all new and I had to approach loved ones and say, “I have a diagnosis of cancer and they are working out a treatment plan for me.” You know what, it was hard. I knew it would be more difficult for people to hear than for me to say. I had to get the first words out of my mouth and then—quickly!—get out the next words, about good treatments available and high cure rates and chemotherapy that is not so invasive and so on. (Much of which I obtained from the Internet.) People’s first reaction, when I delivered the news in person, was the face falling. That word, cancer , (whisper, please!) has such power. It can wipe out so many things, including an attentive curiosity and generalized hope. The person has a crumpled face, and she (usually a she) leans toward me and enfolds me in a hug and tells me s/he is sorry.

I like hugs, I like sympathy as much as the next person. But the lavished-on sorriness seemed a little … premature. People wanted to get out that they were SORRY, they wanted me to know they felt BAD about this. And, well, I didn’t feel so bad myself. And then, to make things worse, they marvelled at my good attitude, how positive I was being, and of course that was bound to be a big part of healing my illness!

But I was being no more positive than my doctor and my own knowledge about this disease inside me. If I’m going to get props for being brave and positive, I want to be brave and positive above and beyond, see? Not just not-freaked and not-in-despair, which truly is only appropriate for me at this stage.
I saw the tumor. I lay on a table, legs in stirrups, draped and sterile, and saw the inside of my own bladder on a screen above me. It turns out bladders are more white inside than pink. The healthy part is whitish and smooth, a little rubbery looking, with some veins and arteries showing. Then the scope moved over to the other side, and suddenly I saw a rather beautiful seascape. Water was being fed into the bladder to keep it open, so first I saw things like seaweed kind of swaying one way and the other in the water. They seemed to be anchored on some pink, mossy rocks. There were some grayish bubbles floating among some honeycomb-like flowers. And there were some bright pink spots, almost red, kind of blooming in the background. I stared in kind of a daze.

All that was cancer. All that was not supposed to be there.

When I asked the doctors about how I had no other cancers related to smoking, one of them said, “The bladder is not a forgiving organ.” The others agreed. I had gone fifteen years without smoking, but this small rubbery vessel remembered. It provided a seafloor to grow this kind of reef on. My doctor said it had probably been doing so for a year or two.

The sight of the tumor(s) jolted me, in a way. I know we are supposed to visualize cancer surgery and therapy as ways to rout the enemy, the bad cells. But it was…so beautiful. Imagining guns shooting and sharks devouring and poisons withering and bulldozers digging out seemed so violent, somehow. I didn’t like the idea. I am not good at visualizing anyway. I hear things in my mind, I don’t see them. So what I did? I talked to the things I saw in the scope. (No, not during the procedure. Afterwards.)

I explained to them that they are beautiful, but in the wrong place. They can’t go on living there. One, because surgery was planned to remove them, but even if not, they would eventually kill their host (me). They had to go. Where? They had to go out into the Great Unknown as we all do when we cease to exist. Their beauty and wildness and ruthlessness had to turn into a shower of glitter and spread out into the atoms and molecules of the universe from whence they came.

Please: I am not trying to say this is a good way to visualize, a better way, or the right way. I am only saying it was the way I have done it. I hate cancer. It has taken the lives of my best friend and my father and many old friends over the last 30 years; it has threatened the lives of two of my sisters and quite a number of other friends when I add them all up. I am just not sure that I hate MY cancer at this time; the one growing in my body that I need to address.

Next up: “See that? That is all CIS.”


  1. Alison! Keep writing! You are describing so exceptionally well feelings and reactions I had & encountered myself - AND you are bringing us fascinating, new angles. I'm recommending your installments here to all my friends & relatives - and thinking: this has got to become a book for many, many to read -

  2. Anne (Zooey), once again thanks! I would like to hear more about your Cancerland experiences some time. I am sorry you had the ordeal as well, but I believe your health is fine now, right? Klems to you.