Focus and Sleep

I went a week without blogging, and I blame the lack of two things: focus and sleep. You’d think I’d be sleeping all the time, since I’m going through two treatments notorious for causing fatigue. You’d also think I’d be super focused, because I certainly set out to be.

I’ve realized that the inability to sleep completely derails me, though. As someone who has never suffered from insomnia before, this feels like sheer craziness. There were nights I slept less than four hours, after having no less than 6 medications that list drowsiness as a main side effect. It broke me down pretty quickly and really hard.

insomnia

It reminded me of college, where I did fewer all-nighters than anyone I knew. In fact, I probably only did two or three my entire college career (including law school). The morning after staying up, I was unbelievably shaky and nauseous. In many ways, I felt worse for longer after an all-nighter than I did with a hangover.

So the lack of sleep this week hit me hard physically, and although it took me a while to realize it, it hit emotionally as well. The thrush came back and I thought that lead to a day of low calories, but in retrospect I think all of the problems came down to that lack of sleep.

As I lost sleep, I started to lose focus. There was one day I was low on my calories and didn’t realize it (and paid the next day by feeling pretty crappy). There were a couple pills I missed and had to take later in the day. I started feeling disconnected and thought it was the treatment finally kicking in, which in turn started to make me a little depressed. The first night I managed to both sleep AND eat enough, I felt so much better that I finally understood what was causing the problem.

I’ve found a couple ways to get more hours of sleep even if it’s not continuous, and I’m going to call the nurse practitioner today to see if I can skip the steroid once I’m a couple days past chemo, or if she can prescribe something to help with sleeping.

So here I am, rounding the corner on week four and going into week five! Despite the more somber tone of this update, I’m still feeling excited and optimistic about treatment. Side effects aside, I know it’s working and I’m eager to be examined and scoped by Dr. D this week to hear what it looks like from the inside.

Overall, I’m still doing very well for where I am in the treatment. I’m on a very low dose of pain medication (much lower and less narcotic than patients usually are on at this time). I’m still working full time (albeit from home). I’m not coughing a lot, and the nausea is usually absent or manageable. I know it’s going to get worse before it gets better, but I’m continually grateful that it’s not worse right now.

I have a tendency to try to project and plan as much as I can. I think it’s part of what makes me successful in my career–I look down the choices we’re making in the game’s design and mentally walk the paths to see if they work.

Charlie told me last night to stop doing that about the treatments though. He said to live right now, in the moment. If I’m in pain, take my medicine. If I’m hungry or too low on calories, eat. If I’m tired, sleep. Don’t worry about what may be coming down the road because you won’t know what that is until it gets here. He’s a smart guy, and I’m trying to follow his advice!

Related Posts

Be Your Own Advocate

I routinely encounter folks dealing with serious illness (mostly cancer, in my circumstances) who accept whatever the first doctor they meet tells them, even if what they’re told is that there is no hope. I

Read More »

Head and Neck Cancer Awareness Month

April is head and neck cancer awareness month! Be aware of the causes and symptoms, summarized in the graphic at the bottom. For me, it was a swollen lymph node below my jaw that didn’t

Read More »

Clinical Trial Math

Clinical trial math example: Monday + every two months = time to start worrying about my scan the following Monday. Tuesday + pain below my right ribs = worry about that AND the scan the

Read More »

My Best Days Are Ahead Of Me

Last year, I was in the hospital from chemo for my birthday, not knowing the cancer would blossom again months later. This year, I’m walking around San Francisco–short of breath sometimes, but walking–looking forward to

Read More »

Unpredictability and Patterns

The every-other-week treatment schedule has become habit at this point. In at 7:45 am, IV and blood draw, discussion with the trial nurse, meet with Dr. Ani, get the blood test results, then infusion and

Read More »

Speaking Out and its Price

I’m exhausted and stressed and sad and angry. I try to keep my posts here focused and positive, but it’s really hard at this point. I was contacted last week by the Organizing Director of

Read More »