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Jay Lake
Date: 2010-05-17 05:47
Subject: [cancer] A little better, some notes on sleep
Security: Public
Tags:calendula, cancer, health, personal, shellyrae, writing
Last night I dreamt about intense negotiations regarding the price of shipping corn and beans by barge. One of the financial analysts from the Day Jobbe was involved. I also dreamt I moved into a squalid apartment behind an enormous comics shop that also carried my books. A very strange church in a converted gas station with boarded up windows was across the street. For some reason, I had no bathroom in my squat, and had to wash up and change in the comics shop bathroom, which was challenging.

This week infusion session ten of twelve looms large. As I am no longer driving at all, everything will be a hassle — checking my mail, getting to my therapist on Wednesday, getting the needle set on Thursday, and so forth. shelly_rae will come down Thursday evening, calendula_witch is having logistical issues stemming from her ongoing illness and may not be here at all.

About that driving, what's going on is that last week's significant drop in functionality has stabilized, but my fatigue levels are persistently even deeper than before. My alertness and reaction times are such that I would continue to be a danger to myself and others behind the wheel, so I've hung up my car keys for the time being. Likely the next 5-7 weeks, as I don't foresee me gaining energy until I've tapered off chemo. I've not been driving after 4 pm for quite some time now, for these reasons. It's now a 24x7 restriction. Self-imposed, rather than doctor-ordered, because I'm sane enough not to be in denial about my poor functionality.

Other than that, my spirits have recovered somewhat. Slept a fitful 8 hours last night without pharmaceutical intervention. Re my comments about resenting all this sleeping time, several folks have taken me to task over it. Please be assured that I am not fighting my body's need for sleep, I sleep as much as I can. My resentment is at a higher level, part of my overall resentment at the losses of energy, productivity and focus that chemotherapy forces on me. That's not negative energy, that's me fighting to keep what's important to me active in my life. I know a lot of people counsel acceptance in times of trouble, but the only way I know to go forward is by fighting for what I want and need. That's why even now I'm still exercising every day, for example.

So when I grumble, please believe I'm not undercutting myself, I'm reinforcing myself. This is my coping strategy.

And it's not a waste of time to sleep. It's a waste of time to sleep excessively. I've already spent close to 300 hours sleeping this year that in a normal year I would not have. At 2,000 words per hour, I could have written three first draft novels with that time. That's what I mean by waste, that's only a fraction of what chemo has stolen from me.

So please don't be alarmed if I don't accept my limitations. Pushing my limits is the best way I know to stay sane.

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User: madrobins
Date: 2010-05-17 14:42 (UTC)
Subject: (no subject)
You do know, I hope, that what I said about sleep was at least 3/4 tongue in cheek. It's a little depressing that you get more done (with cancer) than I do (with merely one child, a dog, and bunions) most days.
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User: keikaimalu
Date: 2010-05-17 14:49 (UTC)
Subject: (no subject)
There's a big push on in our culture to make everything about cancer happy and positive, which I personally think is absurd to the point of being insulting. I'm sure some people derive comfort from positivity, but others cope best through struggle. You are where you are.
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Jay Lake: cancer-do-not-want
User: jaylake
Date: 2010-05-17 14:55 (UTC)
Subject: (no subject)
Yes, what Barbara Ehrenreich called "the cult of optimism." And I believe shelly_rae was actually presented with a brochure about having fun with cancer during her last round of chemo.

Acceptance comes in many forms, not just happy smiling faces. I swear, the whole cult of optimism thing is there to make providers and caregivers feel better. As you know all too well, cancer is a little death in its own way. Why not rage against the dying of the light? Rage is a powerful force that can move, if not mountains, at least souls.
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shelly_rae: Jay & Me
User: shelly_rae
Date: 2010-05-17 16:13 (UTC)
Subject: (no subject)
Keyword:Jay & Me
The header on that brochure was, CANCER, FUN! I didn't even look further. Haven't seen that one around your infusion center.

It's part of why I don't wear the pink hat. I'm no warrior in an army, or a veteran. I'm just someone who keeps going.

Rage is what puts me back on my bike. Or into the race.
love you.
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User: brownkitty
Date: 2010-05-17 15:25 (UTC)
Subject: (no subject)
I worry that you'll fight your way into being unable to fight.

That said, you know what you're capable of and I will try and stop worrying at you.

Out of curiosity, what is Day Jobbe? Or would you rather not say?
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Jay Lake
User: jaylake
Date: 2010-05-17 15:29 (UTC)
Subject: (no subject)
I am a sales consultant in the telecommunications field, working entirely from home right now due to chemo, though normally I travel up to 50% of my time. I don't say more than that on the blog simply because I think it's wise not to mix my employer's business with my personal life.
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User: brownkitty
Date: 2010-05-17 15:32 (UTC)
Subject: (no subject)
Thank you :)

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Laurel Amberdine: peony
User: amberdine
Date: 2010-05-17 15:44 (UTC)
Subject: (no subject)
I always wonder about the balance between accepting an undesired situation and fighting it. I used to hope for a universal answer -- that it was always better to do one or the other, but I had to conclude that life's not that simple.

I, for one, tend to be too accepting of my problems. It's nice to see you fight yours.
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calendula_witch: Miata plate
User: calendula_witch
Date: 2010-05-17 15:51 (UTC)
Subject: (no subject)
Keyword:Miata plate
I will be there! You have misunderstood, dear. :-)
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Twilight: AprilSnowFlowers
User: twilight2000
Date: 2010-05-17 16:21 (UTC)
Subject: (no subject)
Acceptance takes all forms - not driving and sleeping 10-12 hours a day are your forms - fighting for what's important is never a bad thing - and it's part of what makes you who you are.

Bright Blessings especially over the next few weeks - We all look forward to the late middle of June!
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User: dionysus1999
Date: 2010-05-17 18:51 (UTC)
Subject: (no subject)
Iggy Pop's "Lust for Life" comes to mind after reading this post.
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User: martianmooncrab
Date: 2010-05-17 20:37 (UTC)
Subject: (no subject)
A very strange church in a converted gas station with boarded up windows

did you note what time services start?
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