Jay Lake (jaylake) wrote,
Jay Lake

[cancer] Field Notes from Cancerland, midwestern BBQ edition

Regorafenib Side Effects

I've been taking the new medication for a week as of this morning. Side effects started showing up around this past Thursday, about four days in. The most noticeable is the early stages of hand and foot syndrome. Right now this expresses itself as a sharp heat intolerance in my hands and a mild heat intolerance in my feet. This makes it hard to take a shower. I am also experiencing soreness and pain at any pressure. This makes it hard to carry anything weighing more than a pound or two, as well as open jars and bottles, as my grip has already degraded almost completely. Not to mention walking is becoming painful.

I am at risk of becoming chair and bed bound from this, and of losing most of the use of my hands. I can cope with a fair amount of that, but not the loss of my ability to type, or read electronic and paper material.

I'm also becoming hoarse and losing my appetite, which are probably Regorafenib related as well. I expect pathological fatigue soon, though that hasn't appeared yet, and possibly a number of other issues.

This is only the beginning. I have seven more weeks of this regime before we evaluate progress with another CT scan. We'll see how sharply I decline over the coming weeks.

Return of the GI Follies

I am having GI issues which are almost the opposite of Regorafenib's stated side effects in that area. Things are binding up and slowing down in my lower GI. This is unusual for me, given the architecture my multiple surgical interventions have left me with. Erratic, fast and loose is far more my everyday experience. I'm not sure if this isn't just some transient dietary thing or what. We shall see.

Writing Progress

[info]garyomaha asked me yesterday over dinner if I was still working on Original Destiny, Manifest Sin. My answer was yes, but not right this moment. I've had multiple event interruptions in my writing (Gaslight Gathering, Nebula Awards Weekend, Rio Hondo) while being focused on the METAtropolis: Green Space project, that has a final due date in two weeks. Plus the "Hook Agonistes" collaboration with Seanan McGuire. I've actually been getting a fair amount of work done, but much of it has fallen under my generic category of WRPA (writing related program activities) rather than the advancement of wordcount on specific manuscripts.

Given the advance of both cancer and Regorafenib, I am very mindful of having a short fuse on all of this. I expect to be back on Original Destiny by this coming weekend, if not a bit sooner, and will be focused on that until I'm either done or am confronting an interruption too critical to power through.

Business Issues and Interviews

I've been pursuing several parallel tracks of business issues related to disability and estate planning. When those reach a point of fruition, I will discuss them here on the blog. Some things need to happen at their own pace, in confidence, before they can be outlined in any detail. That coping with cancer should involve Sekrit Projekts is both annoying and inevitable. On the plus side of Sekrit Projekts, The Oregonian will be running another in-depth interview with on Sunday, June 9th. I'll link to the online version of that interview when it becomes available.

Star Trek Into Darkness

This isn't at all cancer related, but it's interesting and entertaining. My recent comments on Star Trek Into Darknessimdb ] have provoked quite a set of responses.

Some are here and here on my blog, but the majority are on Facebook here and here. See also this thread on the Facebook page of Nikki Nmd which riffs on some of my remarks.

Fascinating, the range of reactions, not to mention the depth of passion behind those reactions.

Tags: books, cancer, health, meta3, movies, odms, original destiny, personal, reviews, stories, writing

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