It’s a dog’s life

This last month has been so strange. Just a bit slow and swirly, like walking through water. I haven’t been able to do the things I want to, to see the people I’d like to see. I had problems eating and drinking and talking without severe pain, which meant I was on dilaudid which only added to the feelings of disconnect.

In all of this, Cindy died and I was connected as a go-to person for a woman newly diagnosed with ovarian cancer (basically give her a heads-up as to what might happen, things to ask for, things to insist on). And I was just so tired from being in pain all the time and not being able to eat. I felt completely disconnected from the world. Yet, I didn’t want people to come to me because I was tired and speaking hurt. The low level depression, this miasma of misery was hard to shake.

There are other things, too. I’m stopped the trial that was working so well for me. The problem was, it was only working well for me when I was getting the higher dose of the medication. As soon as they lowered it, I wasn’t doing so well. The pictures from my CT scans all say pretty much the same thing: stable. But my blood tests tell a different story, and my oncologist thinks we should listen to the blood tests before the scans catch up to the story.

So now I’m going on a new trial, one stranger and more magical than any I’ve been on yet. The drug, which doesn’t have a name, is a Selective Inhibitor of Nuclear Export. Short explanation: there are high levels of exporter proteins in bodies with cancer. These proteins send tumor suppressor proteins and growth regulatory proteins that should be inside the nucleus of the cells (where they are activated to avoid uncontrolled growth). The drug I will be taking keeps the tumor suppressor and growth regulatory proteins inside the nucleus of the cell where they can do their work. All this is in theory, of course. The only started this trial a little less than a year ago. This drug has been tried in about 30 humans. I’ll be one of them. There are two clinical trials currently testing the drug — the one I am on, and another one for dogs with non-Hodgkin’s lymphoma. I wonder how the dogs are doing. The people have been doing pretty good at achieving stable disease.

If I thought I was on the vanguard of targeted medicine before, I don’t know where I stand now.

The trial has basically made a mess of all my summer travel plans. Yet another trip cancelled, and another shortened drastically. The side effect profile for this drug is low with the exception of severe nausea (which can be pretty easily controlled) but I think I’ll take my last six weeks of Short Term Disability to ease into that transition since my experience with starting new treatments really hasn’t been that great. Call me gun shy.



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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4 Responses to It’s a dog’s life

  1. rvanhalm says:

    Here’s to good results with the new trial.
    Sometimes it helps to have friends near.. Even when we’re not at our best. I know it’s hard to let people see me when I’m not in top form but sometimes that’s when we need it most.
    All the best, Alicia.


  2. Nancy says:

    I hope all goes well.

  3. malawson says:

    You are amazing! My heartfelt prayers are with you, Alicia.

  4. Good luck with this new trial, Alicia.

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