What’s with this sleeping thing???


When I read about the side effects of chemo, I saw sleepiness and exhaustion. I experienced both of them, always together—I overdid things, I got exhausted, felt sleepy, slept.

I haven’t had chemo now for four weeks, and while some of the side effects—heartburn, bone pain, mouth sores—are a thing of the past, other wonderful side effects thrive: baldness and hairlessness, rotting finger- and toenails, papery skin, sadness and hopelessness, and the exhaustion.

I have figured out the formula for my exhaustion (excuse me if I’ve already shared it here—I’ve written so little lately, I think most of it is in my head), and this past Monday is a perfect case in point. I got up at 7:30, got Luka to his bus on time, woke Graydon, and we were on the road by 8:50 for a series of meetings that both of us attended. They finished by noon, then we headed for St. Joe’s where Graydon had a follow-up appointment with infectious diseases at 1. I remained in the car because I got an upper respiratory infection from his pneumonia hospital stay and I’m still suffering from it. By 2:30 he still hadn’t seen the doctor, and I had to go to Luka’s school to sign a permission paper by 3:00, so I took off, signed the paper, returned to St. Joe’s and picked up Graydon. We then went to Shoppers Drugmart. Around this time I wondered why I was feeling so sick and realized I had had no food since the night before—duh—and there was nothing fast and easy to eat at home, so I drove across the parking lot for Pizza Pizza’s walk-in special. Luka was thrilled with the after-school snack, and I felt satiated. I then proceeded to clean the kitchen, make a real dinner, clean up after, etc., etc., and bed by 11.

Tuesday, the next day, I slept through the alarm and four of its repeats. I got Luka up, went downstairs, fell asleep on the daybed, got up, pulled his lunch from the fridge, went up to wake him again, and fell asleep on the bed. I told him I couldn’t drive him if he was late, that he would have to take the city bus and subway, and his lunch was downstairs. And then I slept until he came home at 3:30. I slept from 3:45 until 6. Then I slept from 8:30 until midnight, and 12:15 to 7:30 a.m. today.

So on Monday, I spent seven hours outside the house running around. On Tuesday, I spent 13 extra hours sleeping.

When I was on active chemo, I scheduled “out” days, when I had appointments or places to go and things to do, and “in” days, when I would sleep off the time I spent “out” the previous day. That was a one-to-one ratio: out of the house for three hours, sleep through the afternoon the next day, two, maybe three hours. It was complicated by the fact I had an reactive airway disease (really bad, never-ending cough, runny, gummy eyes, really sore throat) from November to end of March, but it was still predictable that I would have to over-sleep amounts of time equal to time spent running around.

For the last couple of weeks, it has been looking like a one-to-two ratio: out of the house for one hour, catch-up sleep for two hours.

Is this the cumulative effect of eight rounds of dose-dense chemo? Add in some depression and a lot of uncertainty (anxiety), plus another infection? Hiding from the world? I don’t know. But I’m sure I’ll sleep on it.


One Response

  1. Hi Jackie,

    I’ve been wanting to write for days but this post-moving thing has me frantically non-stop. Having to be up at 4:30am for work means a short evening too so I’m cramming everything I can into 5 hours before having to be in bed, which I’m now overdue for lol

    I’m guessing that yes, this sleep issue (understatement) is a cumulative effect of your chemo… your body is fighting to heal itself, and what do we do when we heal? We sleep. I can never get enough damn sleep, but I’ll bet you’re cursing those days when you’re paralyzed by it. I hope for you that this is going to eventually reverse, so that your need for sleep subsides as you heal. I know you have more stuff to go through, but think about & encourage your body to do it’s job when you’re passing out somewhere.

    Still thinking of you every day & sending love, hugs & healing ❤


    ps I e-mailed you my new land line number if you're ever awake long enough or have the energy to chat LOL (I know you're not on your e-mail much these days)

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