Chemo Sleep

March 3, 2010 at 6:36 pm (Uncategorized)

I have resolved to write more on my blog–even on the days when I am sick from chemo or sick with neurosarcoidosis. The entries I write on “sick days” won’t be as thoughtful or coherent as the ones I write when I am feeling better. But I am following Plato’s advice not to let the perfect be the enemy of the good. Some “sick day” entries might be just a sentence or a paragraph, but I want to try to post more days than I don’t. Why? It is a good way for an often-housebound chronically ill woman not to feel so alone; it is a way not to surrender to my disease and its treatment; it will help me keep a writing rhythm; and it gives readers a more accurate sense of what life in Chronic Town is like.

I slept sixteen hours last night, with only a brief interruption in the early morning to gulp down anti-nausea medications and use the bathroom. Then I lurched back into bed and was lost to sleep for another half a day.

Post-chemo sleep never feels particularly restful. I don’t remember any dreams, and I awake from it feeling sore—as if I’ve lain on a wooden pallet not a Simmons Beautyrest mattress decked out in thick flannel sheets.

When I do finally awake, I am sometimes mid-stride on my way to the toilet. My sluggish brain only rouses my body when I need to throw up. Funny how my brain doesn’t give way to my maternal instincts and awaken me to give a sleepy good-bye kiss to Andrew before he leaves for kindergarten. My love for Jay doesn’t prompt my brain to wake me just enough to hold him close to me before he has to shave, shower, and leave for work. No, it is just propriety that percolates through my exhaustion and commands my brain and body to lurch towards the toilet. It wouldn’t do to barf in the bed.

I guess my experiences corroborate recent neurological research and findings. Scientists have found that our oldest and earliest memories are the ones that last the longest and hold the most power. This is why Alzheimer’s patients can recall childhood in vivid detail, but can’t remember children and grandchildren. And perhaps why I can summon up long-forgotten potty training—don’t pee or puke in the bed—but can’t do much else after chemo.

It is frightening to sleep for so many hours—especially when I don’t have any memories or experiences to bring from this sleep. On non-chemo days I usually return to full consciousness with some memory of a dream, or of Andrew slithering into our bed in pre-dawn greyness, or of fighting Andrew and Jay for blankets. But this post-chemo sleep is how death must be. It is nothingness. No dreams, no memories, no reminders of life or consciousness. I don’t even turn over in my sleep. I have been a bad bed companion since childhood. I usually thrash, steal covers, and encroach on Jay’s space. But after chemo, I awaken in almost exactly the same position in which I fell asleep. No wonder I am sore.

I would have thought that sixteen hours of shut-eye would give me at least a little energy. But I awaken and want nothing more than to swallow some more anti-emetics and fall back into the black void.

When I started getting Cytoxan to treat my neurosarcoidosis, the doctor and nurses warned me that “fatigue” was a potential side-effect. I thought I might be sleepy at my desk, have a little less energy when playing with Andrew, or want to take an afternoon nap. I had no idea that sleep would claim me so ferociously.

I suppose it makes sense that I’m be so tired. Cytoxan is a poison. Its job is to destroy any new-growth cells—like cancer cells, mouth cells, hair and skin cells, and granulomae, the microscopic balls of white blood cells sarcoidosis creates. Cytoxan is also one hell of an immune-suppressant, which is the other reason I get it—since I follow doctors who believe that sarcoidosis is an auto-immune disease, that the disease is a result of my own immune system attacking the body it is supposed to protect. Whatever good the Cytoxan does, it is a poison—a “cell killer,” as its name literally suggests. On chemo days, I joke that it’s time for my infusion of rat poison.

My doctor told me the other day that I’ve gotten twenty times the dose of Cytoxan as cancer patients. Of course, I get much less of the poison with each individual dose than a cancer patient, but I’ve been getting the stuff for many months more than they do. Its effects are cumulative. It builds in my body and lingers. I am more exhausted and more nauseous after each month of Cytoxan.

Friends have suggested that I try to relish the days of sleep. “Pretend you’re at a spa,” one said. I didn’t have the heart to remind her that if I went to a spa, I’d want to rise early for a massage or a hike. I wouldn’t want to fall into death-like silence and immovability for most of the day.

I keep pinning my hopes on Cytoxan chipping away at the neurosarcoidosis that makes my life so crappy. It seems to be one of the few drugs that effectively fight the disease in my brain.

And maybe practicing for death—morbid as it may sound—isn’t such a bad thing. It makes me appreciate the light streaming into my room, Andrew’s chirpy voice when he came home from school, the metallic ringing of the phone. It was a desire to erase the awful taste of oblivion in my mouth that prompted me to open the computer and write today.

But now, I’ve got to go back to sleep.


  1. Nancy said,

    OH – you summed up the death sleep of this disease. I am always amazed at the lack of motion – not feeling rested, just feeling as though I have put in my time. I think it is stored somewhere in the universe and that some insomniac in need gets to draw from the fund. Keep up the good work – the sleepless of the world need us. N

  2. Rebecca Stanfel said,

    Dear Nancy,

    I really appreciate you taking the time and energy to read my blog and post a comment.

    I wish that my words did not resonate with you–that both of us were healthy. But I am glad that I was able to capture a piece of your reality in my writing.

    As I mentioned in an earlier post, I would be delighted to open up my blog to other voices. If you ever want to write and post something about your experiences with chronic illness, I’d be honored to provide the space.

    I hope you are feeling a little better,

  3. Nancy said,

    Thanks for the offer – I fear that scratching the surface of these feelings may open a huge gapping wound – tempting the fates – having the rug pulled out – snap away my last piece of sanity inducing denial about this stinking new life. I see hope here – I sound mad. Nan

  4. Rebecca Stanfel said,

    Hi Nan,

    You don’t sound mad, at all. You sound like you know what will make you feel worse and you are taking care of yourself by not engaging in that. There are definitely times and ways for me to “scratch the surface.” Sometimes I find writing very helpful in my coping with stupid sarcoid. Right now is one of them. However, sometimes even the thought of even thinking about sickness (ironically, usually when I’m the sickest and facing the most daily reminders of sarcoidosis) makes me feel like I’m going to fall apart. This is when I have enormous gaps on this blog. I believe whole-heartedly in what you aptly call “sanity inducing denial.” If you’re ever in a different emotional space and change your mind, know that this cyber-space is always open to you.

    Hang in there,

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