June 19th, 2013


[links] Link salad is a jelly donut

Cliches and other chatter keeps our minds from thinkingLisa Costello with some further thoughts on my progress through what remains of my life.

More JayCon photos

Cancer gene sequencing effort struggles through waves of false IDsMuscle proteins, smell receptors show up in some putative lists.

3-D Printer Brings Dexterity To Children With No Fingers — Oh, wow. (Via Melissa Shaw.)

Kenner's Daddy Saddle. It seemed like a good idea at the time. — Presented without further comment.

Classical sculptures dressed as hipsters look contemporary and totally badass — Hah! (Via Lisa Costello.)

How Cities Compost Mountains of Food Waste

Laser Scanning Reveals New Parts of an Ancient Cambodian City

Sky trains, super bridges: 8 of the world's most spectacular infrastructure projects

7 worst international aid ideas — Yup. (Via [info]danjite.)

Climate change threatens trouble in the near future, World Bank says The World Bank is beginning to commit billions of dollars to flood prevention, water management and other projects to help major Asian cities avoid the expected impact of climate change, a dramatic example of how short the horizon has become to alleviate the effects of global warming. It's amazing, how virtually every scientist, economist and politician in the world outside of American conservative circles has fallen for the liberal propaganda of climate change. Even the oceans themselves have been fooled. Thank God for Rush Limbaugh and the Republican Party keeping the flame of truth alive, eh?

Jindal: “Deal With It”Republicans are the conservative party in America, but it’s a party that has little or nothing to offer to middle- and working-class Americans, its latest period of unified government was disastrous, and over at least the last twelve years it has alienated millions of people through a combination of incompetence and ideology.

GOP congressman: I oppose abortion because fetuses masturbate — The conservative mind is a wonder to behold. These people actually get elected. By actual voters. Amazing.

QotD?: Berliner, anyone?

Writing time yesterday: 1.25 hours (WRPA, mostly editorial work on METAtropolis: Green Space)
Hours slept: 5.25 hours (fitful)
Body movement: 0.5 hours (stationary bike)
Weight: 247.8
Number of FEMA troops on my block installing Islamic footwashing sinks: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg; Unseen Academicals by Terry Pratchett


[cancer] Things I have been told this week

In the process of pursuing various disability claim issues and whatnot this week, I have been told some fairly amazing things by otherwise helpful and friendly customer service people at various providers of health and disability services. For example:
"Oh, don't worry about those emails notifying you of claim documents. Sometimes our Web site just sends them out even if nothing's there."

"You'll be receiving some more forms in the mail shortly. Ignore them."

"Yes, the phone system will ask you for that information every time you call. It doesn't apply to you."

Mind you, in each case I had to ask very specific questions in order to elicit this information.

Here we have a benefits management process of Byzantine complexity, involving dozens of forms running to hundreds of pages, along with multiple overlapping deadlines and complex application procedures. A single missed deadline or omitted form can derail everything and disqualify me from various programs. Yet the intake processing and IT infrastructure of these services is so eccentric that it falls to me to understand which bits of information or sets of documents are critical and which are superfluous.

It's not like I'm mortally ill or profoundly stressed or anything. Of course I have the time, focus and mental energy to sort through what the providers themselves can't get right. Thank you for asking.


[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.


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.


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.


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.


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.