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[cancer] Field notes from Cancerland, peeling fingers edition - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2013-06-19 04:46
Subject: [cancer] Field notes from Cancerland, peeling fingers edition
Security: Public
Tags:books, cancer, family, health, meta3, odms, original destiny, personal, radiantlisa, work, writing
Hand-Foot Syndrome

I'm off the Regorafenib this week as part of the monthly dosage cycle. This seems to mean that my feet hurt a little bit less, and there's also less pain in my hands. Even so, my lovely case of hand-foot syndrome progresses. There's some cracking in the skin around my heels. My fingers are peeling like crazy. (Though oddly, so far my thumbs are not.) I am not seeing rawness yet on the fingers, and the peeling barely even itches. It's just kind of weird.

Sleep

Regorafenib continues to play merry hob with my sleep cycle. I tire and fall asleep too early, and sometimes also pass out in the afternoon. Yet I'm awake between 2 and 3 am every day. Sometimes I can get back to sleep, mostly I can't. I'm netting five hours and perhaps a bit more of sleep most nights, occasionally six or so. Weirdly, even Lorazepam does not seem to help this very much. As it happens, I'm surviving okay on this level of sleep, but it leaves me without mental or physical reserves, at a time when the treatments and the stress of terminal cancer eat at my heart, mind and body.

Busy-ness

I have been very, very busy this week. Day Jobbery is wrapping up with various project handoffs, knowledge transfer efforts and so forth preparatory to me going on disability as of 7/2/2013. In order to do this, I have four separate disability claims that need to be filed and followed up on: FMLA, Short Term Disability, Long Term Disability, and SSDI. This in addition to a considerable amount of detail effort to manage my severance from the workplace. Not to mention all the followups and action items from multiple recent meetings with attorneys (plural), the financial planner and the accountant. And everything else that goes on around here normally, including writing business, dealing with health insurance, medical appointments and so forth. So, yeah, busy.

Writing

Speaking of writing, I am at least moderately back on the horse. I worked last night on finalizing METAtropolis: Green Space, specifically my own story and that of the mighty [info]kenscholes. I have to bat clean-up on a number of minor items today. With any luck, tomorrow I can return to my work effort on drafting Original Destiny, Manifest Sin. I am slowing down (see below), and I've for the most part stop accepting invitations to contribute to markets. Just getting through what I have in front of me is close to impossible. The new, it is receding. Even so, I am still writing.

Cognition

I continue to notice mild cognitive impairments. A combination of memory lapses and being hard-of-thinking. Not sure if this is a Regorafenib effect, a stress symptom, or just my general state of being after all the chemotherapy of the past few years. Most likely all of the above. One place where this manifests starkly is that my ability to either explicitly multitask or to juggle multiple tracks of effort in a tightly-coupled process has all but evaporated. I've turned into a one-thing-at-a-time guy. Something that hasn't been true of me ever, right back to the very beginning of my life. I feel the loss of some of my capability.

Palliative Care

Today, Lisa Costello, Dad and I are going to see a palliative care specialist to talk about end-of-life planning some more. I expect this appointment to cover everything from pain management in my terminal decline, to hospice care decision making, to advice on administrative and financial issues. Like so many of my meetings of late, it will be sobering and overwhelming. This is a difficult path I walk now. Appointments of this nature are trail-blazers that lead me to where the shadows deepen and the light leaches away until I am left with nothing but blood, bone and fear.

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daveraines
User: daveraines
Date: 2013-06-20 05:21 (UTC)
Subject: (no subject)
Re: Hand-foot syndrome - I was surprised that you shook my hand at Jaycon. I thought we'd have to blow kisses at each other or something.

Re: Cognition and palliative care -- such words of wisdom as I have are all faith-based. All I can say is, it's a solemn privilege you've granted through your blog, to accompany you as you walk through the valley of the shadow of death. The metaphor of "giving away pieces of your life" resonates powerfully for me. To turn the distribution of the stuff in your basement -- the stuff of your life -- into a gift for people you love is just really remarkable.
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