How it is

Illness is monotonous.

I typed that first sentence then spent 10 minutes wondering what to write next. Things aren’t bad, but they aren’t good. Scratch that. Things probably are bad, or would seem that way to most people, but to quote the great Lee Hazlewood, I’ve been down so long it looks like up to me.

On paper, things don’t look that bad. My tumor marker dropped, my disease looks more or less stable on scans. But I’ve been having recurrent partial bowel obstructions which incapacitate me with stabbing pain and non-stop vomiting, occasionally sending me to the emergency room so I can be dosed with massive amounts of anti-emetics and narcotics while I wait for my intestines to relax and start working again, which they do after a couple of days of not eating. I could write a lot about food and how I can’t eat most of it, but I think I’ll save that for another day.

I’m also still dealing with the fluid that builds up in my abdomen (and which is quite likely the cause, or a cause, of the bowel obstructions). Every two or three weeks I go in and have it drained, usually two or three litres worth. The last time I went in to have the fluid drawn off, there wasn’t enough for the doctor to access without the risk of puncturing an intestine, which was good news since it suggested the fluid was building up at a slower rate. But then I ended up with a bowel obstruction, which dehydrated me, which led my oncologists to hook me up to IV hydration for two days, which led to fluid building up in my abdominal cavity. It was like there was a direct line from my vein to my abdomen. I gained 10 pounds over two days and started vomiting (again) because my stomach was compressed by all the fluid. So I spent the weekend in the hospital, had three litres of fluid drained, and stuck to hydrating myself by taking small sips of water throughout the day.

Yeah, so despite things being stable, they aren’t quite stable. So I’ve gone off the trial drug. I’m not really upset about it — even when I wasn’t dealing with obstructions, the drug made me feel like shit.

I met with Dr. Mackay, my former oncologist, to talk about what to do next. There aren’t any phase one targeted trials for me to do right now, so I knew we’d be discussing conventional chemo or a trial mixing a conventional chemo with an experimental drug. I assumed we’d be looking mainly at Caelyx (also known as Doxil), which we’d discussed two months ago when we met last. It’s the standard second line treatment for recurrent ovarian cancer, and she had a couple of phase two trials that incorporated Caelyx, which we’d already discussed. Phase two trials are bigger than phase one — they last longer and accept more patients, hundreds rather than dozens — so it seemed likely we’d be looking at those again. But here’s the thing. Most of you probably won’t remember this, but the entire reason I started in phase one trials was because I failed carbo/taxol, the first line chemo combination I was on, and Caelyx wasn’t available because the facility that produces the drug had shut down. Well, history repeats itself. Production of Caelyx has been halted again (likely for good, this time) and oncologists in Canada can’t start any new patients on the drug.

I just laughed when Dr. Mackay told me this. Of course the drug isn’t available. So instead of going on a chemo that I’d only have to take once a month and which would let me keep my hair, I have to go on weekly chemo that will make me go bald (and which isn’t as effective as the non-available alternative).

This isn’t the only thing I’ll be doing, however. In a month or two, a new vaccine trial is opening up and provided I’m physically able to take part, I’ll be enrolled in that. The start of the trial has been held up while the hospital waits for permissions (I guess there are a few hoops to jump through when your experimenting with live pox viruses) and they won’t be enrolling patients until at least the end of November. We discussed my taking a treatment holiday until the vaccine trial opens up, but Dr. Mackay was worried that they might not be able to start enrolling patients until January, and she didn’t want to risk me progressing too much to be able to go on the trial (which requires surgery). So in the interim, it’s weekly taxol. The best I can say about this is that at least it is easy to tolerate.

I don’t have many feelings about this. After awhile, picking your poison becomes tedious, mundane. It’s hard to work up any sort of emotions about the whole thing. It is what it is.


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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One Response to How it is

  1. I’m sorry to hear about the surreal and galloping miseries you’re having to endure, all so ridiculous and ill-fated. I wish you better days and better days soon. If there’s any consolation in such a remark, I know of what you speak as I’ve gone through more medical crises (mostly cancer related) than I’m comfortable admitting. It’s exhausting and demoralizing, and I felt very much like a spectator to my own disintegrating life, even reaching the point where I was just going to stop treatment, stop the tests, stop the phone calls, stop it all and just go sit in a field until it was all over. But like you, I didn’t, and I got better (13 years out), and I would like to ensure and encourage you– there is no better feeling than getting better, of returning to yourself and the world that loves you.

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