The Fear of the Unknown

Monday morning I go back into MD Anderson for another set of tests. I’m one of the lucky ones; my cancer is under control with medication, the itty-bitty little monsters staying well below the 2-millimeter threshold that my oncologist tells me is when they start getting nasty. The tests are just to make sure.

I don’t feel much like a cancer patient. The medicine these days does not cause me to lose much hair, and I have gained weight over the last two years. Of course, that’s one of the odd things about pseudomyxoma peritonei; the little cysts build up in the abdominal fluid and block passage; if the cysts get too big, even if they don’t become aggressive they begin to choke off internal organs and the blood pressure goes through the roof real fast. That’s one of my warning signs; I check my BP every day and if it starts rising more than a little, I need to get into MDA ASAP. So patients with my condition tend to have what looks like a beer gut, from the excess abdominal fluid. Just something to think about the next time you want to comment on someone’s appearance.

So I was watching Patrick Swayze talk with Barbara Walter a couple days ago, and this guy is tough. Stage 4 pancreatic cancer, dealing with chemo every day, but he’s working 12 hours a day to do his TV show, because he’s not giving in one inch to the thing that’s trying to kill him. No self-pity, no illusions either, he knows how it will end but he’s going out on his terms. I was impressed more than a little bit by Swayze, not least when he remarked that for all the people who mean well, if you try to claim you know how to cure any form of cancer you would be both very rich and very famous by now – so please stop selling ‘cures’ that just don’t exist. There’s a special place in hell, I think, for folks who abuse the hope of cancer patients. The media in large part belongs there as well, for focusing on the pain and suffering, and I agree with Swayze that the way the media played on his cancer as if he could die at any moment was cruelly insensitive to his family at a time when they needed reasons for hope and to keep their spirits up. I’m not saying you have to be cheerleaders, but if someone you know has cancer, then their family needs support and reassurance just as much as they do.

I was thinking of all this, because Dr. Lambert is leaving MD Anderson and going back to Massachusetts, to pass on what she learned as an associate professor of Oncology at MDA. My wife was worried that I would be assigned a doctor who was inexperienced or reckless, like my first oncologist. That fellow told my wife in 2006 that I had no hope for even effective treatment unless I agreed to a radical surgery which would have removed several organs, put me on a permanent colostomy, and which under the best of circumstances would have meant 3 months of hospitalization and at least a year before I could leave home on my own. He was, to put it mildly, mistaken. Fortunately, I was able to reassure Mikki that while Dr. Lambert was leaving, I was still going to MD Anderson and my doctor would be an MDA doctor. Turns out it’s Paul Mansfield, the Deputy Chair for Surgical Oncology at MDA. In other words, the doctor who taught Dr. Lambert how to treat PMP. So, very good hands.

Yet for all of that, I am just a little afraid. Afraid that this time they will find something again. That the surgery two years ago will turn out to have been just a temporary fix. That while things have been very good for the last two years, that it have been a reprieve, not a permanent thing. Some of that is because I am about to finish my MBA. The school work has gone very well for me, so much so that sometimes I worry what I have missed, or what could come along to make it all worthless. Silly, I suppose, but I suspect we all have those little fears, things we cannot see coming let alone control. And no matter how hard you work, it seems you’re never ready to let things be for whatever is to come. I need to have more faith, I know, but then again, once you’ve had the word ‘cancer’ told to you, cause unknown, prognosis unsure, even when you’re “better” you know you can never again go back to where you were before. The unknown has teeth, and it hides enemies within it. Yet you must face it, on its terms and time.