I am worried that my eight months of good scans, minor side effects, and a happy oncologist will soon be over. I am going to worry about this for as long as it takes me to write this blog post and then i’m going to stop worrying. It doesn’t really help to worry or try to predict the future in my head.
My chemo has been wonderfully effective for eight months now. It has been so effective that I have been able to return to a semi-normal life (plus a brief period of internet celebrity) and sometimes, I almost forget that i’m sick. But even the best chemo can’t be effective when you’re not on it. And i’m not on it. Today begins week four of not being on it. As part of my normal chemo cycle, i’m given two weeks on, and two weeks off. This month I’ve had my normal two weeks, plus one–now two–more.
Why? Well, first, it was my liver. Now, my bone marrow. My body obviously doesn’t agree that my chemo is as “easy” as it feels, and my bilirubin, granul0cytes, platelets, and white blood cells haven’t gotten the memo that I FEEL FINE.
These blood test indicators of chemo toxicity are particularly frustrating to me for exactly this reason–they are completely invisible. My cancer is invisible too…but in the past, I have been able to sort of tell it’s there or if it’s been growing again based on my symptoms. These blood tests are just numbers on a page that mean nothing to me. There are no symptoms. My bilirubin was double what it should be last week and by far the highest it’s ever been–I was not yellow. (OK–but I will not be drinking anytime soon). Now, my platelets are low. Maybe I don’t clot as easily? And my granulocytes/white blood cells. Maybe I am more prone to catching a cold?
Obviously I don’t know very much about the importance of these counts being within the normal range to normal bodily function. My doctor doesn’t tell me much over the phone besides, this is what your count is, hold off on the chemo for another week, and get your blood drawn again next week. All I know is last spring, when I was on the first type of chemo that my doctor put me on, he kept taking me off it because my counts weren’t cooperating. And after about a month of being on it–but mostly off it–I started feeling nauseated and throwing up like I was at the beginning and I had to get a type of scan I had never had before and then I had to go to the hospital to make sure my bile ducts weren’t clogged. Later I found out that my tumors had started growing a lot again.
So you see, if it were up to me, and if my oncologist didn’t track my blood counts so closely, I would be taking the chemo right now. I keep thinking about something I read in the “biography of cancer” Emperor of All Maladies (which was excellent by the way). When doctors were testing the limits of chemo toxicity and the human body, they did a procedure where they extracted bone marrow, then gave the patient a high dose of many different types of chemo–so high, that they brought the white blood cell counts down to basically zero–and then they transplanted bone marrow back in to get the counts up. It was described in the book in a very macabre way, “bringing patients to the brink of death” with medicine…and then bringing them out again. My counts aren’t that low. And I think the goal is to allow me to live my life and to not have me sit in the hospital at “the brink of death.” That procedure was to knock the cancer out–it wasn’t intended to be a way of life as it is for me. So I probably don’t have this option. But still. Isn’t there another way? Holding off for a week over and over isn’t sustainable. I would rather be taking the chemo than taking but not actually taking the chemo.