I take offense to the idea that I am “battling” cancer (sorry, Dad, I know you have talked about me fighting cancer, but I just don’t see it that way). I’m not engaged in warfare, I’m living my life with an illness. If this were a war, I would have raised the white flag long ago. But it’s not a war; it’s a biological process gone awry. It’s important to remember that this is not a war because I don’t want the decision I made today to be construed as “giving up.”
I saw my oncologist today, and as expected, weekly Taxol was doing fuck-all. My disease has moderately progressed despite the poison we’ve been pouring on it. My cancer just doesn’t respond well to chemo. It’s a low-grade cancer that came back as high-grade but which still acts like low-grade, which means chemo is generally going to be a bust. So when my oncologist asked if I wanted to try a different chemo, I said no. Because I’m not going to put myself through something that is just going to make me feel shitty and likely do absolutely nothing to prolong my life.
I figured we would be talking about clinical trial options today, and we did. Or rather, we talked about the lack of clinical trial options. I’m ineligible for all the Phase 1 trials because I’ve either done them, don’t have the right kind of cancer, or am excluded because I’ve already been on a MEK inhibitor. The irony is bitter: I can’t go on the drug that will help control my cancer because I’ve already been on the drug that could help control my cancer. If anyone knows how to get on a clinical trial or access experimental treatments through a back door even if they hit the exclusion criteria, let me know. Because I sure as hell don’t know how to do it.
The trial I’ve been waiting for, the immunotherapy trial that uses a live virus to turn the body’s immune system against the cancer, is still not open. There is still a mess of red tape to cut through, and funding issues now, to boot, and this trial — which should have opened back in September or October — is now on hold until at least March or April. Which could mean May or June, the way these things work. That’s the only trial I’m eligible for right now. All I can do is wait for it to open. Hopefully that happens in my lifetime. (Poor attempt at dark humor, but guys, what else am I supposed to do? I’ve already spent most of the day crying.)
So while I wait, I’m starting anti-hormone therapy, which has a miniscule chance of doing anything useful, but has minimal side effects so it doesn’t hurt to try. It helps stabilize low-grade ovarian cancer sometimes, so might as well see if it does anything for me. At least it won’t feel like I’m doing absolutely nothing.
I’m not going to lie, I’m in a pretty grim place right now. Choosing to forego treatment is not an easy decision to make. But I’m not interested in in pursuing treatments that are unlikely to do anything but affect my quality of life just so I feel like I’m not “giving up.” And I will happily undergo treatment again, just as soon as something appropriate comes along, or I figure out how to get Novartis to give me access to the only drug that has ever worked for me.
Until then, I wait.