When the disease declares itself

I look at the grass that wraps around the subway entrance at University and College and all I want to do is lie down on it, just spread-eagle face to the sky. This is the first sign that I am not coping as well as I thought only minutes before. Lolling about on the grass is only acceptable inside of parks, with the exception of drunks and children, who can lie anywhere without a second glance. A blonde girl in a flaming red shirt and high-waisted shorts lying on the strip of grass between the sidewalk and subway entrance would attract attention to herself. I slip Ativan under my tongue — one, two –and count to five.

I told my psychiatrist about my panic attack at my last oncologist appointment. And I told him about my upcoming appointment, the one where we would have the latest blood tests and CT scan results. He asked if I wanted to go through some scenarios together to practice and prepare myself for the next day. I said yes. He said, okay, what could happen? I could find out the chemo is working and the cancer is shrinking and that would be great. It’s also the least likely of the scenarios. I could find out that the results from the CT scan are indeterminate — that we can’t say one way or the other if the disease is being held steady, or if it is advancing but not yet noticeable. In that case, I’ll have to decide between continuing the current treatment, switching to another, or just stopping and watching for awhile. And how am I supposed to pick between those? It would almost be better if the results came back conclusive of progression. At least then there’s no uncertainty about what to do. I just do what the oncologists want me to do, what they feel is best.

And you know what? It was a relief to have the results come back showing progression despite the latest chemo I’m on. I thought I would be gutted by that news, but that didn’t do it. The progression didn’t do it.

What comes next grabs me by the neck and pushes me against a wall (that happened to me once, when I was 16, a boy I was friends with grabbed me by the neck and pushed me against the wall as a joke. It was a terrible joke, but so is this, so I’m kind of thankful to have the experience already in hand, this “joke” of being pinned helpless to a wall by someone or something much bigger than you in the name of humor, when the humor is awfully hard to find).

I’m throwing carbo/taxol out the window. Carbo/taxol, the regimen my gut was against from the beginning, but the gut is rarely consulted in making treatment decisions. Instead, we’re looking at Phase II and III trials — oh, look, here’s a good trial for me. It’s the drug my oncologist wanted to put me on for this regimen but couldn’t because it isn’t available right now, except for research. Well, I can do the research trial and get the drug, our number one choice, right? No, because I’ve had three lines of chemo now and for some reason that makes me ineligible. Well there’s this other one available. It’ll mean coming in twice a week, you might get the placebo with the drug or you might get the drug with the drug. But wait — the drug companies might not want me because I’m too “high-risk” what with my previous bowel perforation (despite the fact that it was a non-cancer-related perf). Nurse says, not likely, but here’s the info to look over just in case I can strong-arm the drug company into taking you on, if you want it. Oncologist suggests looking into the Phase I trials again — the last of which I failed to meet the criteria, I’m always failing the criteria — in case there is some new drug being tested that wasn’t being tested the last time we were looking for me.

If we exhaust all these options, we look at other standard second-line treatments, whatever those may be. We haven’t even got there yet. The joke is that I’m told about all these options — all these good options out there, and I can’t access them. Because the drugs aren’t available outside clinical trials. Because I’m deemed “high-risk.” Because I’ve had too many lines of chemo (a real kicker because I never wanted to do this last line of carbo/taxol anyway, I knew it was a bad idea, and if I’d done something else, I might be eligible for or not needing a clinical trial).

And this is what grabs me by the neck. I thought that progression would mean a clear path forward, but instead it offers all these potential paths forward, but not for me. For me, it looks like we’re just going to start throwing regimens at her to try to figure out which will work, in the words of my oncologist as delivered via email to my other oncologist. (To be clear, this is the exact situation she hoped to avoid with me. She wants to get me in a trial. He wants to get me in a trial. I want to get me in a trial. But the trials don’t want me and the drug — THE DRUG — that everyone would like to give me is not available. It’s not available. The drug company is not making it. It is a very good drug and it is not available unless you can get on a research trial and I can’t go on the research trial because I’ve been treated too many times.)

The good news I was greeted with was that I don’t have any cancer in my lungs. Maybe I’ll celebrate that news with a cigarette. It would accompany the bottle of wine I’m downing quite nicely.

The hardest part of all of this is knowing that whatever I end up going with, barring a miracle, will be the fourth or fifth or sixth treatment choice of my oncologists. It’s hard to put a lot of faith into the fifth-best option, you know? Makes you want to lie on the ground in public.

I talked to my psychiatrist about maybe stopping treatment for awhile — I have no symptoms other than those brought on by treatment, so what not watch and wait? He said that that is called waiting for the disease to declare itself and that it’s something a lot of people do. I think my disease has declared itself. Through imaging, at least.

I have plenty more to say on all this but I’ll stop now lest my increasing drunkenness leads me down a path of no one will love me, what’s the point of treatment if I feel fine without it and it only makes me feel worse, maybe if I just ignore it, it won’t do anything, what if the chemo is making it worse, and I told my doctor I didn’t think carbo/taxol was a good choice and now I’ve just wasted the last four months on a stupid drug that stupidly didn’t make me any better, indeed, I am worse off than I was when I started it, etc. That maudlin, woe-is-me thinking can get a little too self-indulgent in times like these.

This is me, signing off.


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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30 Responses to When the disease declares itself

  1. Shit, darlin’. *I* will love you, though I know that doesn’t do anything.


  2. Nancy says:

    My heart, my insides, my brain achesfor you. This is so unfair.

  3. Des Young says:

    Fuck! FUCK! I have been here before Alicia. You are not alone.

  4. Sara says:

    Alicia, I’m a facebook-friend of one of your friends so periodically one of your statuses pop up on my timeline when my friend comments or “likes”.. so I’ve sort of been following your journey.. (Not in a creepy way) . I think you must be very strong. You seem very sweet and I while we don’t know each other, I can say that the kind of person you are seems reflected in the sheer number of people who care about you. You have some pretty great people in your life – and so maybe when you are feeling sad and alone and awful – maybe that’s something you can take a little shelter in. I’m thinking of you and I’m also hoping for that miracle for you.

  5. Angela Hickman says:

    I just found your blog and I am astounded at your honesty. There is something so inherently hopeful about writing about deeply personal experiences and then sending them out into the void, and your ability to keep doing it tells me something about how strong and lovely a person you must be.

  6. Jen says:

    Fuck cancer. I know we don’t know each other other than being Twitter pals, but I’ve been reading you and rooting for you and will continue to do so. Just to reiterate, fuck cancer.
    (Also, I think you should steal that bottle of wine.)

  7. Kim says:

    Per your tweet, I’m gonna say something, anything. I don’t know you well enough to swear here–although I feel like it–and I’m not going to ask you any questions that have probably been answered in an earlier post. Just know that I read, and god this really, really sucks. And I want to come back and read some more, even if the posts are about sucky things.

  8. Carolyn says:

    Hi Alicia! We don’t know each other – but I saw your blog linked to a friend’s profile on Facebook. We’re about the same age and I want you to know that I think you’re pretty fucking fantastic for writing all of this. You’re my new hero.

    I understand the frustration, albeit not on a personal level. A friend of mine had emergency tongue surgery at 20/21 to take out a tumor the size of a golf ball. Gross, right? Yeah, she thought so, too…

    I don’t know if any of that made you feel any better, save to say that you should keep writing! We’re out here and listening. I will write bitchy letters on your behalf to get you into trials. One woman in the States resorted to YouTube to pressure a drug company to make a generic drug available, so never take no for an answer.

    And wine is good… Red wine is an excellent detox.

  9. ap says:

    You don’t know me, but I think you are fucking amazing. Truly.

  10. Dad says:

    Stay strong Alicia, I wish I was closer and could share the wine with you…I will always love you!

  11. Arianne says:

    let’s smoke a cigarette together. and toast to paragraphs. red wine. grass where you can find it and the word fuck.

  12. barismumyakmaz says:

    It s bad to hear that. But I m still following you. I will keep on sending blessings along your way. Be well, please.

  13. d says:

    OMG I am standing so close to you – have had many of the same convos with my oncology team. At one point they described my oc and treatment (while refusing to discuss my prognosis), thus: I’m in a huge tree, zillions of branches spreading every which way. They know I’m “here” and the oncology team wants me to get “there” but along the way this or that branch may not work or may break and they need to build a bridge to get me to “that spot” so that I can then move along to “there”. It’s all very higgledy piggledy to me and reminds me of the old Price is Right game called Plinko (I’m older than you are) – where the contestant stands atop a platform and drops a disk down a large pegboard and the disk goes all over and finally settles in to an unexpected slot at the bottom. Maybe I’ll put this on my own cancer blog but frankly, reading yours, I’m not sure there’s a need for mine! Well done. Best wishes to you.

  14. sowhen says:

    I have a friend who wrote to you earlier today. A friend of hers told d and those of us who are in her fb group about your blog. I have read it from start to now. What you have had to go through is crappy. Just plain crappy. Same for d. Both of you are sharing in your unique ways and for those of us who love you and support you through thick and thin – blogs help us understand a little bit. Helps us know the kind of thing that can help you or others we know. Your friends and d’s are only to ready to step up – its what people do for each other. With the greatest respect,


  15. ss says:

    thank you for your honesty and bravery. I wish you love, peace and wellness, because you deserve all this and much, much more. (I saw your link on SJ’s NYT posts) xx

  16. amy says:

    Hi, just stumbled upon your blog and wanted to tell you I’m very moved by it. You write very well. I’ve got cancer, too, a rare sarcoma, but am currently in a kind of remission. You wanted to give your hand a long-distance squeeze. Take care

  17. amy says:

    should read: I just wanted to give…

  18. curled_up says:

    I think your blog is incredible. xx

  19. Mike Jerkobs says:

    I read this.

  20. Mal and Elaine says:

    Alicia -you are a brave lady –remember we love you –please come for a visit when you go to see your Dad –we would like to see him also –take care –Auntie and Uncle

  21. Priscilla says:

    Hi Alicia,
    I stumbled upon your blog recently. I’m a 31-year-old who is undergoing chemotherapy for breast cancer in Toronto at Mount Sinai — so I’m very familiar with the slow escalator ride under the glass ceiling at Queens Park station, each time accompanied by a vague sense of dread. As a Stage IIb I often think about what it would feel like if I was instead a Stage 4 or diagnosed for a much more difficult cancer like what you have. I think I can relate to your post in the sense that so much of this cancer business makes you feel so powerless and have no sense of control. What’s at stake is the most important thing to you — you life –, but it often feels like there is so little you can do about what is happening. When you feel like you’re on track to something and whoa you’re blindsided again.
    Sometimes it’s hard not to think that other people, those in the “healthy world” who do not have to go through this, at this moment, are dealt with an easier hand in life, even though this is totally a irrational and harsh point of view. I find myself looking at the girls on the subway with envy — how they glow with the energy of youth, with their long hair and thin legs, uncumbered by the effects of chemo drugs and steroids and pain medications. But we all take the hand we’re dealt with, I guess. I don’t have anything worthwhile to say about your post, but take care of yourself. I can tell already that there are a lot of people care about you.

  22. Emily says:

    I liked the comment you left on the NYT blog Life Interrupted, so I jumped here. I will go back and read more of your blog, but here you made me laugh with the idea of celebrating no lung cancer with a cigarette. I am drawn to your honesty and I am so sorry that the options, that day, were not good. I want to send you a link to my friend Colleen’s blog, also strikingly honest about her cancer, however: is it bad form to link it now that she is dead? One of the observations she made was that she still had a good life even with cancer, even if she died. Also, the strength and support she got from her blog, both the act of writing/processing her experience, and the comments from those who knew her & those who came to know her, was a solid and amazing thing.
    I would suggest, of course, reading it from the beginning.

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