Not much left to do but wait

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.


About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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16 Responses to Not much left to do but wait

  1. Emma says:

    I just hate this for you. I’m sorry.

  2. Tori says:

    I’m so very sorry to hear this. The only answer I can think of to your question, “If anyone knows how to get on a clinical trial or access experimental treatments through a back door” is compassinate use. I’ve heard it can be tricky, but I know occasionally people can get it. Best of luck to you.

  3. sweatysoul says:

    Booo to red tape. If anyone decides to give you shit for your decision just let me know. I know you could (and would) destroy them verbally but sometimes a good kick in the throat is what’s needed.

  4. Megster says:

    You’re not giving up. You’re giving yourself over to living the best you can, given the situation. I’m sorry about the trial. I wish there was something that could be done to get the Novartis drug to you.

  5. Jo LeeryPolyp says:

    Another “fuck!” to the chorus. Hey. I like you a lot. I am so sorry this is happening to you.

  6. Louisa says:

    Thank you for doing such a beautiful job of explaining. Unstintingly, compassionately, these pieces anticipate what we need in order to feel like we understand. I am a faithful reader of your faithful writing. More power to you.

  7. i really cannot imagine what a day in your shoes would be like. what you face. the emotions you scale. these words help me understand some. some of your words, i have to read more than once, and they hurt to read. it takes courage to live as you do. good for you for choosing what is best for your life alisha.

  8. Shitandfuck. And I’m sorry.

  9. kamilla8b says:

    Utterly sucky (the situation, not your decision). Thinking about you.

  10. Kim says:

    Oh, Alicia. I’m really, really fucking sorry. I’m going to chime in with Tori and say that I have heard of compassionate use in Canada before (I haven’t been here all that long but it happened for someone in my husband’s family) and I hope that it’s something that can happen for you, too.

    Thank you for writing.

  11. Tiara says:

    Some info here about the the Special Access Programme (SAP) which can get you access to nonmarketed drugs:

    I hope it helps.

    ~ T

  12. Ian Belknap says:

    Son of goddamn two-time bitch. This business of being compelled to accept the unacceptable is dog shit. I wish there was something I could do. Obviously, this is a cinderblock wall of powerlessness and frustration, though. All I can offer is my sympathy. Which is paltry and useless, I know. But it’s what there is. Remain stouthearted as you can.

  13. Jodi R. says:

    As someone else said, this isn’t a matter of giving up. But I also like the idea of declaring a giving up. Because, yeah, as you have astutely pointed out before, the metaphor of battling–successfully, or, alas, losing–is not just problematic but, I imagine, so tiring to be beholden to. I am so sorry to hear that the horizon is not looking that hopeful, in terms of treatment. I wish for you one of those crazy miracles that sometimes in fact happen. Much love.

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