Jamais reposé

This clinical trial, while I think it’s doing wonders for my cancer, leaves me feeling tired, like the kind of tired when you have to get up earlier than usual to attend a conference for work or something and it’s in a big hotel ballroom and there’s no breaks for like three hours and the room is just a little too warm and there are no windows and it’s taking everything in you to keep from nodding off. That’s how I’ve been feeling.

I’ve started sleeping more, 10 hours most nights, and I only need to take one sleeping pill now to fall asleep. I notice the effects of the Ritalin more now than I have since I was hooked up to the dilaudid pump. It hits me like a cup of strong coffee, but at three and a half hours it wears off so suddenly, like a flip has been switched, that it’s a startling reminder that I don’t regulate much of my body without help these days. My psychiatrist gave me the go-ahead to increase the dose. I have. It’s not making much of a difference.

I can’t really complain, though. Most other side effects have been fleeting and mild. I had an ocular incident for the first two days on the drug. It made parts of my sight blurry, like I was viewing the world through an Instagram filter. It went away. My skin is sensitive to the cold so much that my cheeks feel pained and burned if I spend any amount of time outside when the weather is even a few degrees below zero. I could be at risk of developing a rash some of the other patients have had, but I’ve avoided it so far. I wash my face in olive oil, slather it with coconut oil throughout the day.

My blood pressure is high again. Have other patients been having trouble with their blood pressure? I ask my nurse. She shakes her head no, my blood pressure has been confusing everyone for months. What was once low and stable is now high, erratic, inconsistent. I’m on a calcium channel blocker again, a higher dose this time. I wonder if I can ask to switched to a beta blocker. They’ve been linked to better outcomes in ovarian cancer patients for some reason not yet known. I’m pretty sure I read that beta blockers aren’t allowed on the MEK inhibitor trial though. Probably because it could skew the data.

It’s a bit lonely being in a clinical trial in which there have been only slightly more than a dozen people enrolled, and that across the world. Massachusetts, Utah, Spain, France, Canada. Later, Belgium and the United Kingdom will start recruiting. I am patient 18. Not all the patients before me are still on the trial. I wish sometimes that I had someone to talk to who was going through this, too. Someone who could tell me what sort of things they were experiencing, who could commiserate about the side effects in all their subtleties.

I feel very much like I am expecting this treatment to end swiftly. Every week that I go in, I expect to be told I can no longer continue. This Thursday, I have to sleep over at the hospital again, but when I say that to people I always add, as long as I pass all the tests. Another eye exam. Another ECG. Blood tests. So many places where things can go wrong. But there’s absolutely nothing I can do about it, so it is pointless to worry.

I’ve been talking to my psychiatrist about being back at work. Since I started working again, I’ve been really happy, I told him. And I can pick up new clients for fact-checking and I enjoy that kind of work, it’s something I’m good at and I couldn’t do it while I was on leave. And I have my events, and a fundraiser I’m helping with, and the book… 

He asked me if I was sure it was a good idea to be taking on so much. I told him I don’t know any other way of being. I assured him that I know when to step back, when to take a break. He sees me a couple of times since I started back. You use work as a distraction, he told me.

It has been difficult to hear that. At first I argued that I don’t use work as a distraction, until it occurred to me that he didn’t mean it in a negative way. He was actually congratulating me on my recent coping abilities (two weeks in a row without crying in my sessions!) Distractions are not a bad thing.

Back to the fatigue for a moment, though. I’m going to need to find ways to work through it. Right now, this means hiring someone to come in and clean the apartment and maybe asking one of you out there in internet land to offer to come over for a day to help me do laundry. Piles and piles of laundry. And I’ll take meal offers, too, though I have to warn you that I am currently not allowed to eat legumes or whole grains. I also accept dog walking services, if you happen to be in the neighbourhood. I hope this is a temporary state for me, part of the settling in, or that I can figure out how to manage it better after living with it for a few weeks. Anyway, in the meantime I’ll accept benevolence from wherever it comes.


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.
This entry was posted in Clinical trials, Indignities of the human body, psychosocial oncology, Second recurrence and tagged , , , , , , , , , . Bookmark the permalink.

2 Responses to Jamais reposé

  1. malawson says:

    Love and prayers from New Jersey, Alicia!

  2. fotogfoodie says:

    Jojoba oil is very good for the skin too, and it might smell a little better than olive oil 🙂

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