Jay Lake: Writer

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[Cancer]

[cancer] Wasted days and wasted nights…

Absolute failure to sleep last night. I spent eight or nine hours in a hypnagogic state, more or less, so at least I was resting in the dark. I feel stripped like paint this morning.

It’s been rougher than ever lately. I note from an old blog entry that I walked three miles the day I came off the chemo pump during infusion session one. Nowadays, walking up the block (50 yards or so) is brutal. I’m emotionally and mentally thin, while the recent additional cognitive deficits have stabilized but not recovered. A lot more tears, a bit more panic, and return of the sense that my life has been dramatically shorted. (That’s not medically justified by any specific indicators or prognoses, it’s just a form of cancer fear.)

The upcoming schedule is that I have the last infusion session June 18th through June 20th. I come off the needle for the last time then. I have several recovery curves to deal with, ranging from the fatigue and digestive issues (perhaps 4 weeks to something acceptable, plus more time to normalcy) to sexual and immune responses recovery (perhaps 8 weeks to sexual recovery, oddly, my white blood cell counts have held up abnormally well) to peripheral neuropathy (up to two years to recover, with possible permanent effects).

I am probably going to be back to traveling in late July, but will have to schedule around quarterly CT scans starting in July or August, plus colonoscopy and lower GI followup, and perhaps eventually day surgery to remove my chest port. I have been advised that leaving the chest port in makes the CT scans an easier process. Given what a mess my veins are after the last 26 months of cancer experience, that is highly attractive. I had some minor bloodwork done yesterday via my left arm, and due to the scarring in my veins the needle overshot and had to be pulled back, causing internal bleeding. This fairly normal for me now with an arm stick, unfortunately.

Frankly, the upcoming scans terrify me, or would if I had the energy to focus on them a little more. My history with scans is either fantastically good or fantastically bad, depending on the viewpoint I choose to adopt. I think if we find another round of metastases, I will come completely unglued. I was way too young for my original cancer (about twenty years earlier than average age of diagnosis), and I was absolutely not expected to have any metastases, given the staging and treatment at the time. It’s fair to say that medical expectations of the usual course of tubovillous adenocarcinoma have been violated twice in my case already.

Cancer is made of fear, at some very basic levels. That fear has infected my family and loved ones, and it has infected me. Mostly I laugh at it, just like I laugh at most people and things that bedevil me, but this isn’t publishing failure or ongoing Internet harassment or a flat tire or a chest cold. This is life and death stuff, something that can erase all my ambitions, hopes and fears and leave a hole in the hearts of others I love so much it makes me ache with grief to contemplate.

So I am afraid. I don’t let fear stop me, but sometimes it is a millstone larger than the world, fatigue its sly ally.

Thank the universe for love and hope and kindness.

And sleep. Argh.

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