Learning curve

I don’t know the total number of months that I spent in treatment in my life, but one would think it was enough that I would know what warrants a call to the nurse and what can wait until the next visit. But maybe the rules are a bit different with clinical trials and I’m also dealing with side effects I’ve never had before, so I’ve fumbled a bit this week.

I’ve been tired some days, not all of them, and find myself lying across the foot of my bed to rest for a moment, then falling asleep for two hours. The sore throat that I thought was just a virus, especially once I could control the pain with Advil, broke free of the bonds of painkillers just last night and remains untouched by any remedy. I have a couple canker sores in my mouth, but those aren’t really a problem, the problem instead is this feeling of pain all across my tongue and the roof of my mouth. It feels like layers of skin are missing, but when I look in the mirror, everything looks normal.

In addition to all this, I can’t really eat. I mean, I just don’t want to, I don’t feel hungry, and when I make myself eat, I can only eat the smallest of amounts. Add the trauma of pain every time I try to force feed myself, and there’s just not a lot of success. So I’m drinking goat’s milk when I can. I add protein powder to whatever it is I’m ingesting — juice…that’s actually it, really. I’ve mostly been on a juice and milk diet for the last three days. I’m a goddamn toddler. I also drank an Ensure, so I guess that also makes me an elderly toddler. Don’t ever read the ingredients list on a bottle of Ensure, by the way.

But I’m trying to eat because the last thing I want is to be kicked out of the study for not eating. I mashed up some potatoes with a can of chickpeas and spinach and protein powder and a whole lot of Greek yogurt, butter, and milk. It’s pretty easy to swallow and even if I can’t eat much, I’m sure it has about 1000 calories in each tablespoonful.

My nurse is really wonderful. She called me today to ask me to go straight up to the 18th floor to have my blood tests done tomorrow, rather than waiting to have them done downstairs. Before she hung up, she asked me how I was doing. I told her — reluctantly — about the sore throat. And the mouth sores. And the fatigue. Why didn’t you call me? she said. My only answer was that I didn’t really think it was bad enough to call until it was practically time to see her again. She told me she’ll let me off this time, and that she’ll write up a prescription for my mouth pain. I was crying by the end of our conversation because I realized how miserable I’ve felt.

It’s a problem of mine, not trusting my body. I think after so many years of mixed signals and treatments that I expect to cause discomfort, I don’t always know when something is bad enough to take consideration. I hope I get better at that.

Unrelated to the above, I saw Martin Amis speak last night. Towards the end of the interview, Ian Brown asked him something like, How do you miss Christopher Hitchens? Amis said something like, I always felt Hitch loved life more than me, more than anyone. And I feel as though he’s left that as a gift to me, that I love life more now because of him. I think he also said that Hitchens was adored, and really, aren’t those two things the best you could ask for in a life? To leave adored and imbuing a greater love of life on those who adore you.


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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7 Responses to Learning curve

  1. Catherine says:

    I hope your mouth sores clear up asap with the medication prescribed. Are you able to eat soup? Maybe some creamy broccoli that is packed with calories and goes down easy. Or something Thai with lemongrass involved.

  2. Priscilla says:

    You saw Martin Amis?! And I also missed Zadie Smith. Wow I need to get on top of things.

  3. Connie says:

    Hope things improve rapidly for you Alicia

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