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 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.

“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.

South Asian (left) and Siberian (right) style temples at Kharakhorum, the ruined monastery at the site of Genghis Khan’s lost capital. Photo © 1992, 2013, Joseph E. Lake, Jr.

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

More JayCon photos

Cancer gene sequencing effort struggles through waves of false IDs — Muscle 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 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?

6/19/2013
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

Here’s why:

I am in no wise philosophically opposed to using such a solution. In my Day Jobbe life, I have more than a passing familiarity with Automated Speech Recognition (ASR) technology. It’s wonderful stuff and can be quite powerful. I like the concept plenty. ASR can be liberating on a number of fronts, from the narrowly technical to the profoundly creative. There’s only one small problem.

I don’t talk like I write.

For a long time I’ve been of the opinion that if you stuck a professional writer’s head into an fMRI machine (presumably whilst still bolted to the rest of the professional writer in question), you’d find that the speech center which lights up when composing fiction is distinct from the speech center used for ordinary, everyday communication. It’s English as both a first language and a second language. In my case, my written fiction syntax and style are noticeably different from my spoken syntax and style. Sentence length and complexity, word choice, rhythms — I’m two different people.

The writer who’s been in careful training since 1990 is a different speaker than the blabbermouth who might use Dragon. The stories each of me can and would tell are quite different.

So while I’ll turn to Dragon if I can, once my hands give out if they do, I don’t want to go there too soon. I’ll lose something essential. I might gain something just as wonderful — I am open to the possibility — but right now I value what I have while I still have it.

Check out the whole set.

Photos © 2013 Narrow Path Photography, all rights reserved.

Chinese style temple at Kharakhorum, the ruined monastery at the site of Genghis Khan’s lost capital. Photo © 1992, 2013, Joseph E. Lake, Jr.

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

bedii

Early stop-motion with real insect characters — Uh…

Watch A Robotic Cheetah-Cub Run

Materials Scientists Build Chlorophyll-based Phototransistor

The Faulty Logic of the ‘Math Wars’

Global Attitudes toward Homosexuality — Generally, the more religious a country, the less accepting its citizens are of homosexuality: Ah, the magical link between bigotry and faith.

IRS scandal: Is partisanship overshadowing facts? — Is the sky blue? Is water wet? When you have one party explicitly dedicated to inventing its own facts regardless of objective reality, then by definition partisanship overshadows.

QotD?: Are you in neat little rows sporting canvas frills?

6/18/2013
Writing time yesterday: 0.0 hours (restoring dead computer)
Hours slept: 6.5 hours (solid)
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

A photo which was both taken and arted up by Nina Kiriki Hoffman. © 2013, all rights reserved, used with permission.

All the excitement of JayCon XIII is behind me, along with JayFest and the various auxiliary festivities. This means that I am back to focusing on the difficult details of my life. Including still not having my laptop, and thus missing access to many of my files. I believe the new one arrives tomorrow. It also means the mental and emotional landscape has shifted from a multitude of entertaining distractions to being back at the center of Cancerland. Melancholy prevails.

Appointments

This week I see a trust attorney for some more estate management discussions, and a palliative care doctor to talk about end-of-life planning in detail. I’m also sitting for a print interview, as well as film shoot not connected to Waterloo Productions‘ ongoing Lakeside project. More about these as they unfold.

Life Transitions of the Financial Sort

The house refinance finalized and funded last week. I hadn’t really written about that here while it was ongoing, simply so as not to create problems in the process should the lender Google me for diligence. I’ll say more about this later in a detailed post on end-of-life finances, but the general idea was to reduce the interest rate in order to minimize cash flow going forward.

Likewise, I have begun the process of separation at work, and my last day on regular payroll is currently set to be 7/1. I’ll go on Short Term Disability for a while, then transition to Long Term Disability later in the year. I have a lot to say about this process, but would prefer to see it all play out before I comment publicly. What is clear is that I will go through a period this summer of essentially zero income, which will be scary and tight.

Emotional Ripples

Lisa Costello had a near meltdown a few days ago in which she told me how difficult it was to watch me dismantle my life piece by piece. Which is exactly I am doing. Leaving work, simplifying and shutting down financial accounts, giving away or getting rid of much of the contents of my house, saying good-bye to geographically distant friends as I get the chance to see them, and so forth. I pointed out that dismantling my life on my own terms was itself something of a gift, as it grants the illusion of control and allowed me to arrange things as I see best. Those brave words aside, she’s absolutely right. This process is heart-breaking. My only comfort is that it’s even more heart-breaking when your survivors have to do it all unexpectedly.

Regorafenib Side Effects

Side effects bingo continues. As of today I am in my off week for the drug (21 days on, 7 days off), so the side effects have hopefully peaked for now. Some of the advice we’ve given is that month one is the period of maximal side effects, some advice says month two. In either case, we expect a plateau after the peak, with the possibility of some mild amelioration. In the mean time, yech. My mouth continues swollen and sore. After most meals I brush my teeth with pharmaceutical grade toothpaste, then rinse and gargle with a saltwater solution followed by a baking soda solution. (I tried combining those two at first. Pro tip: Don’t. Just don’t. Trust me on this one thing.) After that I rinse with the lidocaine mouthwash. Let me tell you, go through that a few times and you never want to eat again.

The other overwhelming side effect is the hand-foot syndrome. As of yesterday I was finally seeing some skin breakage, just peeling on my fingers mostly. But the pain in my palms and soles has been quite troublesome. I walk with a cane now, use a disabled parking permit, and spend as little time as possible on my feet. I also wear cotton gloves most of the time, to avoid incidental friction on my hands. Yesterday my feet hurt so badly I thought the skin of my heels had torn free (which is a possible thing on this medication). In related news, the swelling in my scrotum continues, though we’ve managed to mitigate it by having me wear briefs which are slightly too small for me. This gathers and cradles the affected area, which keeps the skin of my thighs from irritating the swelling. Crazy stuff.

I’m also continuing to experience erratic GI function. Admittedly, that’s my ground state these days, but the Regorafenib creates mild constipation on top of everything else. This is pretty much the opposite of what it says on the tin. And my sleep patterns are just weird at the moment. Unless I have a strong amount of social distraction, I will all but pass out by 9 pm. I will then wake up between 2 and 3 am, and usually cannot go back to sleep. Even my friend Lorazepam doesn’t seem to fix this problem. Just lately, I’ve been falling asleep in the afternoons, and fairly deeply at that. What I’m not yet doing is hitting that pathological fatigue that has characterized so much of the rest of my chemotherapy experience over the years.

I see my oncologist next Monday, along with more bloodwork to track my liver functions and overall body chemistry. We’ll have to find out what the second month of Regorafenib brings. I suspect this will depend a lot on how much the side effects diminish this week in the absence of continued further drug dosage.