One thing I've learned about cancer treatment--fairly early and easily: pain management is aggressive.
I have been asked at every appointment to discuss the pain I feel and to rate it on a scale of 1-10, which I find uniquely hard to do. Having not had a lot of persistent pain issues in my life, where do I start with how I feel now? Of course I don't want to invade the upper register just yet--I'd prefer to save that against the possibility that I'll need to escalate this game of self-diagnosis. I don't want to underestimate it because--damn--it's there, and it's always, and it has to find it's level for coping.
I've been going with 4, though I have used 6 to describe the more transient full head pain that accompanies the ear pain, which seems to coordinate with the pain that I feel...where? sort of in my jaw, in the roots of my teeth, in the teeth themselves, across the burning tongue...a happening that usually comes when it's time for bed, when my sinuses are fussy, when I'm tired.
The 4 rating nets a 5 mg percocet every 4 hours, bumpable to 10 mg. 5 tends to be the dose that keeps me just foggy enough that i shouldn't drive but can operate a vaccum cleaner or feed the dogs. 5 makes me aware that at 3:45 hours between doses, I need to head for the kitchen and take the next one.
10 is a dose that for me means I'll pretty much blank out into a type of sleep that I recall as a blank white sheet. It neither flaps in the breeze, revealing a pretty summer sun behind it nor is it pulled back like the scrim of a very amateur theatrical--just a white sheet that hangs there and prevents me from remembering much of whatever I dream, which doesn't seem that interesting to begin with...
Typically, I have story dreams. They seem quite complicated in retrospect, fully realized little mystery stories, romances, intrigues, full of people who know me and whom I in return know absolutely not. So percocet 10 mg, while slaying the beast of what jangle is rumbling in the head, does take away the fun of wondering why I'm talking to some ersatz Russian in a parking lot in some wild little story playing only in my head.
As you get older, sleep does simply become a bit harder to achieve and often less productive. As a younger guy, I had the blessing of falling asleep fast, staying there, and waking up totally refreshed. Not so much anymore, and not at all in Cancer town.
I'm sure that part of the problem plays out in the tiny little synaptic network that runs the unconscious mind, and that in there, I'm replaying scenes of everything my mother went through fighting cancer--breast and ovarian--for years. Years of chemo, years of relapses--all without much apparent break in her productivity--how the hell did she do that?
Right now, walking to the mailbox feels like work. Feeding the dogs a gulag sentence to hard labor. I know we all have our own reactions, our own limits, but damn it, I should be better than this! but right now, I'm not. I've wanted to be my mother's son for years, but never more than today.
Somewhere in that neural mesh, I'm seeing my sister who recently had an operation to remove a tumor from her neck, wrapped around her carotid artery--a situation so dire that the choices were operation or hospice. The only time I've ever seen my sister cry was when they were taking her to surgery--in 66 years. Never before. It was a moment I cannot and will not forget.
I am not a crier, but I have cried recently, and for me, quite a bit. It's not that I feel sorry for myself or put upon--as you can see, genetics were not stacked in my favor, I did smoke for many years, I may not have eaten everything I should have, I've never been a perfect person, yadda yadda yadda. I'm actually crying for what I believe are the reasons my sister cried that day.
We are no longer offered choice or choices. There is a wall to the left and the right. We are making the choice we are offered in extreme frustration, often on 2 or 3 hours of sleep--night after night. There is pain we aren't used to and can't control. Our toilets aren't pristine, our houses need to be dusted. We'd like to eat real food and can't.
And the simple request for 8 happy hours underneath the surface of consciousness, warm and comfortable? Not likely to happen anytime soon.
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