[cancer] Field notes from Cancerland, peeling fingers edition

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.

17 thoughts on “[cancer] Field notes from Cancerland, peeling fingers edition

  1. Laurie Mann says:

    Insomnia also robs your memory and makes thinking hard. I watch Jeopardy every night and my answer is frequently “I USED” to know the answer.” It’s good to get to know your palliative care team and that they get to know you.

  2. homa_bird says:

    More amazing eloquence and honesty, thank you from my (our) core. I was at the Big Powell’s recently and looked for your books, I’m not a sci fi fan; the Flying Snowman hits, for me, on page one, first paragraph…which is odd because I think of sci fi as the height of allegory: fantastical stories born of the imagination that illuminate/inform society’s deep seated directions/concepts/trends/visions. I do love spiritual allegory (such as the homa bird story) but regrettably have never been able to stay with sci fi. So I did not buy your books, but your cancer blog? Incredible and every word the color opposite of a flying snowman. I deeply hope this comes out in book form. One closing question/request: do you think you could bring your eloquence and honesty to bear on any good things related your cancer experience? In my own cancer journey with my sweet grandson (we started #1 of 20 daily radiations yesterday…brutal) beauty and sorrow have been woven together in astonishing and miraculous ways. Just wondered if you have any thoughts on that. Thank you again.

    1. Jay says:

      do you think you could bring your eloquence and honesty to bear on any good things related your cancer experience?

      Wow, is that a challenge… Let me think on it.

  3. Harald Striepe says:

    Re sleep: try 20 min naps. They have been my salvation when sleep cycles go awry…

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