Back in the joint

My oncologist said I’ve spent more time in the hospital than out during this trial. A slight exaggeration, but not far off the mark. I’m in here again, have been since Friday evening when I developed a fever for what feels like the hundredth time in the last six months. My request to wait until morning to go to the hospital was overridden by my oncologist, which turned out to be a good thing as shortly after arriving I developed a faint, dotted rash over my arms and legs. Classic strep, the ER doctor said, maybe staph. You’re not going home. If I hadn’t developed the rash, I would have gone home (as promised by my oncologist) that night after having blood taken for cultures. Because it might have been nothing, just a side effect of last week’s infusion. My fevers come like clockwork after them, though it doesn’t biologically make sense to develop a fever that long after a drug has been administered. But it happens every time. However, correlation does not equal causation.

This most recent hospitalization is/was particularly stressful. There have been issues with the trial drugs — the oncologists thought my third cycle started when I began treatment again after the last round of infection, while the sponsors considered the cycle to never have stopped, so I was dosed on the wrong day and had to have a week held and blood tests done on a day I wasn’t supposed to have them, according to the doctors, and it’s all very confusing and in all of this my blood pressure was too high despite medication and I had to hold off on taking the MEK inhibitor (my daily oral chemo) while my dosage was changed and my blood pressure returned to normal.

Basically, what this all means is that despite my strong response to the trial, the sponsors could decide that it is too dangerous for me to continue, or that I’ve started and stopped too many times to give them adequate data, and I could be kicked out. I’m sure I don’t have to explain that that would be a very bad thing.

Fortunately (it is a grotesque word to use, considering the situation), it seems that the infection stems from my portacath, aka the line that runs through a vein and stops just above my heart, and through which chemo is administered and blood is drawn. This is fortunate because I had a documented line infection the last time I was in the hospital and the oncologists can argue to the sponsors that I had an inadequately treated infection, and thus the trial drugs are not the cause of all these problems, and I can potentially continue the trial.

Unfortunately, this means my line has to be removed and I have to complete another round of antibiotics, and have all my blood draws/infusions done peripherally, that is, through veins in my arm, which is not an easy feat to perform on me. And another two days, at least, in the hospital, though I might gun for a pass to the outside world again since this time I’m not desperately ill and my doctors might be more accommodating of my desire to spend time somewhere that is not here.

I’m being rather matter-of-fact about the whole situation. I know the worst case scenario (being kicked out of the trial) and the best case (staying on the trial). I know there is absolutely nothing I can do to sway the outcome, so I’m trying to keep it from unraveling me. Three months ago, this would have undone me. But now…my psychiatrist says I’m becoming more flexible. Maybe that’s the case, or maybe because I know this drug is working for me, I feel like the sponsors will do all they can to keep me on the trial, and if they won’t or can’t, I can find another trial that will take me, or maybe I’m just so used to incredibly bizarre and shitty things happening that nothing surprises me anymore, which is kind of a nice thing, not to be feeling so much turmoil, but is also not exactly a nice thing, not to be feeling so much of anything about this. Sometimes it’s hard to tell the difference between apathy and keeping calm.

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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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5 Responses to Back in the joint

  1. Nancy says:

    Here’s hoping the trial sponsors keep you.

  2. TM says:

    I admire your ability to get to a place where nothing surprises you anymore. I’m sure it has been quite a process – how did you get to that place? In any case I think keeping calm is the best way to go.

  3. TM says:

    Makes perfect sense!

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