14. The Decision

The greater the distance from chemo treatments, the better I felt. Not that the side effects were gone. After all, I was pale as a sheet from spending so much time out of the sun. My muscles were weak. And tingling and insomnia were still with me. But my mind began to clear up. My appetite began to return. My energy level increased. And, fresh off the PET scan report that showed a "complete response," I could finally envision looking beyond the next day. The more normal I felt, the less inclined I was to put my body through hell again.

So....did I really need the surgery known as a radical cystecomy? It sounded pretty yucky. Remove the bladder. Remove the prostate. Remove all those lymph nodes. Cut into my small intestine. Tear out a section. Stitch my intestine back together. Formulate the prized part as a pseudo bladder. Hook it up. With the caveat that it wouldn't work like a normal bladder. The new bladder would simply be a receptacle for urine, with no muscle structure to void the fluid. Thus, I'd have to use my abdominal muscles to do the trick.

That's not all. The neobladder would continue to share a characteristic with its former parts in the small intestine: it would produce mucus. In the small intestine, mucus helps break down food so it can pass through your body. In the neobladder, however, mucus blocks the sphincter through which urine must pass to leave your body. It's unclear how long the neobladder would continue to produce mucus; it might lessen over time, it might not. So, besides the physical trauma of recovering from major surgery, I'd have months and perhaps longer of adjusting to a new bladder that would be difficult to use a certain amount of time. How would I void my bladder in these cases? Welcome to the world of catheters. Other side effects, like incontinence, were a possibility, too.

In other words, my decision on whether to have surgery was more than one of avoiding a recurrence of bladder cancer. It also was a decision to accept and cope with a total lifestyle change for the rest of my days. Hmm. Let's just say, I wasn't exactly rushing to make up my mind.

And it's not like the alternatives were any better. For instance, I could have gone with an intestine-turned-internal receptacle as well, but with an access port built on my abdominal wall where I would void the bladder by inserting a catheter. This is known as an Ileal conduit urinary diversion. Another choice was an external pouch, called an Indiana Pouch reservoir, which would sit on my side and be voided there. Not having at least the possibility of going to the bathroom normally ruled these out for me. Also, if the neobladder proved too problematic, I always could switch to one of these systems. But I couldn't go from one of these to a neobladder. So the choice to go with a neobladder is really a choice to give your body a chance, however big or small, to void your bladder somewhat normally. Still, what a shitty set of options.

Dr. Schenk was leaning on me to get the surgery, of course. No dummy, he. And I understood his perspective. But I needed to make this decision on my own. For guidance, I turned to the stats. By now, I knew that bladder cancer had a high rate of recurrence. But just how high? Pretty darn high, it turns out. The low end of estimates said 50 percent for lower-staged cancer. Yes, that was the low end, and for stages I had esclipsed. The high end? 85 percent and up. In fact, bladder cancer has one of highest recurrence rates of any form of cancer. Geez! Therefore, my decision had to assume that cancer would return if I did not have my bladder removed. And what if the cancer does return? I asked Dr. Moreas. Well, he said, it can come back in the bladder or another vital organ, with a greater vengeance, spread more quickly and aggressively, with no assurance that treatments will be as effective as the ones I just went through. Gee, thanks for that ray of joy.

Okay, okay. I guess I'm going to have to do this, I thought. Softening the blow were Dr. Heyer's words from way back when: remove the source element, and my odds for long-term survival jump considerably. Okay. I see the logic here. But, God, I wish it was in the direction of no surgery.

What did I do? I escaped. I did anything and everything to fill my days with activities that didn't remind me of cancer. I went to work for a few hours here and there. Great to see people. I went to ballgames, and caught up with friends there. I took Kate and the kids to restaurants. A trip to Thomas Jefferson's home, Monticello, proved to be too much -- I suffered dehydration -- but even that was okay. I went to gatherings with my broader family. My sister Betty travelled from Denver to visit me. I spent time on personal finances and a business plan for work. Escapism gets a bad rap, but it definitely has a role in the life of cancer patients.

My worlds started to collide, however. During mall walks with Kate, I began to notice all those posters in the walkways, posters I had previously ignored. What were they about? Cancer awareness. Oh. Wanting further escape, we went to the movies to see a romantic comedy called "Crazy, Stupid, Love" (which turned out to be bad, boring, dumb). The purist form of escapism. The movie trailers began. First up: "50-50," a film about a guy who learns he has cancer and portrays his struggle to survive. Umm, God, are you trying to send me a message here?

His message: there was no escape from cancer. It was everywhere. And I had to adjust to that reality. After a while, I began to realize that the name of the cancer support network at the hospital, Life with Cancer, was called that for a reason. It really is life WITH cancer, even for those in remission. No matter how hard I tried to escape, cancer was now a part of my life, part of who I had become. Accepting this truism didn't mean that I was giving in to cancer. No, no, no. But it did mean that I couldn't ignore my condition. My battle with cancer was not over. I still had work to do. The surgery, as awful as it seemed, became a must-do. There simply was no avoding it. Which, of course, brought my mind back to my mortality, all the hardship I would have to endure in the meantime, and the impact on Kate and the boys.

My mind was made up. The surgery was a go. I hated the decision. I absolutely hated it. But for me, there could be no other way. No going back. No second guessing. Instead, much like before I began chemotherapy treatments, I had to get my mind and body prepared. I had until Sept. 19, 2011, to get ready. Strengthen myself physically. Get tough mentally. Support my family. What I didn't know? For what I was about to experience, no level of preparation could have sufficed.

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