“The Tumor Markers are Unchanged”

Yesterday, I went in for my now semi-annual check at M.D. Anderson. Generally, things are going well, except for the new insurance company. It’s bad enough that I got laid off by my old company, but the new job meant new medical insurance, and as some folks predicted it’s not a patient-friendly company. But that’s for another time, perhaps.

Dr. Mansfield was, as before, cautiously optimistic. What had been four visits a year was dropped to two a year after my visit in July, and Dr. Mansfield told me that he saw pretty much the same thing as last time.

“The tumor markers are unchanged”, was how he began. After seeing the blank expression on my face, he explained for a couple minutes that my condition in general was unchanged, which in cancer terms is good. Actually, I’m doing very well, certainly more than I have a right to expect. It appears that my little floating bio-bombs started an uprising back in 2006, got cleaned out for the most part when Dr. Thomas did my surgery in November of that year, and have basically contented themselves to just float around and lurk in my hydroperitoneum. They are still there, just floating about and hard to detect and count except for a cyst on my spleen, not messing with my blood cell count or any of the things that indicate metastasization. As usual, my blood pressure is a little high, even with taking my Exforge, and I carry around a bit more belly than I like, because of a bit of extra fluid. But nothing really serious. Just take my medicine and do my visits, sometimes to my primary doctor and sometimes to MDA.

Oddly, that’s one reason I hate these visits to MDA. I feel like I have no business going in for tests and consultations when I’m not going through any of the things most cancer patients have to endure. I have not had to go through Chemo, no radiation treatment, I got to keep all of my hair, have not had nausea in a very long time. I sit in the waiting room for my tests and doctor visits and feel horrible, partly for how much pain and suffering I see, and partly for the fact that I don’t fit. Of course, my wife would be upset with me if I sounded like I wanted to go through all those things, and I understand – mentally at least – that there is no shame in having caught my cancer early, that my visits are necessary to make sure it has not come back, and my doctors remind me every so often that because the cause of PMP remains unknown, what causes it to metastasize is still unknown, and because my condition is unusual – the cancer having been caught early because I ruptured my appendix – I represent an opportunity for learning more about the thing and MDA is a part of UT Medical Branch and therefore a teaching hospital, that it’s important, a good thing, that I come in for these visits.

Still.

Why was I lucky, but so many others are not? Why can’t I do something that actively helps other cancer patients?

And of course, at the back of all of that, there is that little knowledge that while on the one hand I get to enjoy a comfortable lifestyle and good reports that the nasty little cells are still at bay, there is no way to know what will happen in a couple years, much less later on. The first incident came out of nowhere and the cause of PMP has never even been suspected, and while they are not growing, neither have the tumors gone away. You can’t kill them with drugs or chemicals because they don’t act like any other known form of cancer, you can’t find them all and flush them away, they are there and always will be, floating inside your abdominal walls unless and until they decide to attack you. Makes them sound like a tiny pack of bacterial wolves, I guess, but the point is that while they are well-behaved little cancers in my case, they are a bunch of tiny little microscopic things that don’t belong in me but I have to live with them for the rest of my life.

My point? I don’t have one, really. I just needed to rant, to give voice to worries and some irrational thoughts that nonetheless needed exercise and expression. To express a sense of being an outsider, both from the community of cancer patients and yet also unable to deny my cancer, either.

I’ve been called lucky. I understand why, but I still don’t feel lucky. Not about this.

Just tired. Frustrated. And mad at myself for being this way when others have it so much worse than I could ever imagine.

Some days I can’t find easy answers, is all.

Thanks for your patience.