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|[cancer] Field notes from Cancerland, peeling fingers edition
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.
|[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.
|[links] Link salad is a jelly donut
Cliches and other chatter keeps our minds from thinking
— Lisa Costello
with some further thoughts on my progress through what remains of my life.More JayCon photosCancer 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 WasteLaser Scanning Reveals New Parts of an Ancient Cambodian CitySky trains, super bridges: 8 of the world's most spectacular infrastructure projects7 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?
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)
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|writing] Why I don't use dictation software (yet)
In various discussions of my issues with hand-foot syndrome
, people have asked if I would consider using Dragon
or some other dictation software. The short answer is, "Not yet."
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.
|FIREFLY - The Series - A Review -
My history with Joss Whedon's erstwhile science-fiction-western series FIREFLY
is somewhat spotty. I tried to fix my gaps of knowledge and memory of it being too boring to watch by buying the DVD with all episodes (even some never aired!). So I (finally! after 3 years of owning the box set) watched all of that, including watching the extras and all the episodes with commentary twice, and still I say: It's somewhat "mehhhh" to me.
Mostly because of two issues: a) nothing that works as a seasonal let alone as a series arc; and b) I kept being thrown out by the world-building. Projectile weapons in space? All planets looking like pioneer farms? REALLY? And I'm so sad I weep inside that I can't 100% rave about this because: a) I love love LOVE Joss Whedon and Nathan Fillion; and b) I really enjoyed the SERENITY
movie a lot, and thought it would be much like the TV show.L-to-R: Innara the space hooker; River Tam the droopy psycho; Wash the pilot and feckless husband of Zoe; Simon Tam the preppie doctor; Kaylee the mechanical genius who'd never been in a ship before Serenity; Shepherd Book, the mysterious man of God; Jayne the meat-head mercenary; Zoe, ex-military like Malcom and his 2nd in command. Sitting: Mal(colm), the captain.
The character of Mal (Fillion) started off dark and brawny, which is not the wheelhouse for Nathan. FOX Network gave Whedon notes to make Mal funnier and have more humor just generally, and they didn't air the special 2-hour pilot that Whedon made. That confuses someone watching the episodes one after the other. I did like Mal by the final episodes, but his arc was muddled and the various relationships he had with his shipmates went from stern to goofy, huggy to I-don't-know-what with Innara, the "space hooker." Fillion is so charming I will watch him in about anything, but when this series debuted in 2002/03, I watched two unremarkable episodes, and, deflated, did not make a point to watch them further.
It didn't help that FOX moved the show around and didn't show it some weeks. I can see Whedon's point about not having the network support he needed. But 10 years later, the only
scene I remembered at all was when the tattooed-faced thug refused to take back the smuggling money and vowed to destroy the crew. Whereupon Mal kicks him into the spaceship engines and makes a deal with the next in command. Watching all the episodes over a series of days, I got to like the crew, especially Jewel Staite as Kaylee and the awesome Amazonian Gina Torres as second-in-command Zoe. The commentary by the actors and producers stated that the people working on the show adored it, and loved working with each other. The Browncoats, the name for the Serenity fans, and the ongoing panels at Comic-Cons over the years have made it clear the fans for the show (or for Whedon stuff in general?) are fervid, and that's what helped to get that Serenity movie made.
So lesson #1 I would say to Joss Whedon: when you're creating your own world and characters (which he did not for Buffy or The Avengers or Angel; he worked with a story created by someone else), you really must give us a hook in the first episode that plays out over the course of the whole season. FIREFLY didn't have that. We got a premise of a group of kooky people on an old Firefly ship doing quasi-legal jobs in the byways of The Alliance. There was a little mystery in who people really were. Who was Shepherd Book (Ron Glass)? What happened to River Tam (Summer Glau) and what had the evil scientists turned her into? But even those things weren't hit hard and made intrinsic to the weekly storylines. At least in BUFFY, we had each season's Big Bad Guy, and the stakes were raised: Buffy and her crew had to vanquish the bad guys + the Big Bad or else Sunnydale was destroyed and, by implication, California, the USA and the world. In FIREFLY, if the ship Serenity blew up, the universe wouldn't be all that affected. The movie SERENITY did this major arc stuff, got us quickly grounded in the situation, set up the evil people messing with gifted children, set up the scary Reavers which threatened the whole galaxy, and did a great job of resolving several plotlines.
Actually, I suspect Joss Whedon is all about Summer Glau and expects everybody else to be too. River Tam is nutty, annoying, sometimes violent, and mooches around with her mouth hanging open in the TV series. So if he was expecting the viewers to be hooked because of the mystery of what happened to yet another gawky, geeky girl character in a Whedon story, it's not strong. In his other series, Willow or winiFred or Whiskey, did not carry the series arcs; they were interesting side characters.
For lesson #2 I have to challenge the Joss Whedon conceit that one can successfully make "Rawhide in Space." OMG, everytime I saw a lovingly detailed rifle or holsters sagging with tricked-out pistols, I cringed. You can't fire projectiles in space -- you breach the hull and ALL ARE DEAD, everybody knows that. And why does the future include pioneer bonnets, riding horses, saloons with whores in corsets, and lots of cattle rustling? Even the rich Tam family is essentially living on the Ponderosa ranch from BONANZA. Really? Multiple planets in the future settled by The Alliance and nobody has the society and broken-down tech of, say, The Tank Girl or Mad Max? Because those are much more likely. This is a scheme so many storytellers and media people want to mix: cowboys and space. But it's crazy hard, and I felt insulted by how lazy Joss Whedon got about this. Plus:
Aktuala Mood: disappointed
- Most of the crew of Serenity has feathered hair. Feathered hair (on Mal, Simon, Jayne, Kaylee, ...) requires good haircuts every 4-6 weeks. Pioneers and cowboys didn't have feathered hair.
- How can a space hooker make any money bunking on an itinerant ship on the edges of known space? Innara complains to Mal about it at one point, but in today's prostitution, the whores are in one place and customers visit them. Those who travel to the boonies, and that is a deal, are the lowest ranked, not quality. But we're supposed to believe Innara is very high class indeed.
- Where do their meals come from? We saw Shepherd cook a special meal on his first night on the ship. After that, food just appeared at that table, and we never saw people assigned to cook it. Nor did we see them buying food stocks.
- And if you decide the people of the future speak English and Chinese, OMG, do not have people rattle off whole Chinese phrases! Whedon is quoted as saying "people understand without a translation" but no. No, we do not. I could understand a few cuss words. I could understand some formal titles. But jeez, this was another world-building thing that fell flat for me.
|Free Fiction Monday — Prophesy in Shadows
On July 9th, my new novel, The Guardian Hound, is being published by Book View Cafe.
I continue to be excited about this.
In the five weeks leading up to the novel release, I plan on publishing a short story a week, and having each available for free for that week. All the stories are about the world or somehow involved with The Guardian Hound and the various clans.
This story is actually the first interlude of The Guardian Hound. It was second short story I wrote about the novel, when I was merely writing short stories, and not writing the novel yet.
( Read the rest of this entry »Collapse )Crossposted from my website. If you'd like to comment, you can do so here or there.
|[cancer] Field notes from Cancerland, post Father's Day edition
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 RipplesLisa 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.
|[links] Link salad flies before the Flame of Udûn
Birthday Song’s Copyright Leads to a Lawsuit for the Ages
— Ah, the magic of copyright. Especially in Happy Birthdayland. (Via tillyjane
, a/k/a my Mom.)Portland's Hoyt Arboretum attempts to set the world's tree hugging record
— Because Portland! (Via @bobhole
.)Repairing Bad Memories
— Hmm. No potential for abuse here.Who Made That Mouse?
— The history of a human interface. (Thanks to Dad.)Scientists Moving 15-Ton Magnet From NY to Chicago
— I think this was one of my word problems in 8th grade math. Puffed-up hot Jupiters may be getting an electric charge
— New model suggests they're heated up by magnetic fields of solar wind.The Pope’s Gay Panic
— More moral bankruptcy from the greatest pedophilia shelter in history.Why Dwindling Snow—Thanks Largely to Climate Change—Might Dry Out Los Angeles
— I continue to be amazed at how liberal propaganda on climate change has fooled even reality itself. Thank God for Rush Limbaugh and the Republican Party, or this country might have been able to do something about the problem before it got much, much worse. Which would be a shame, because that would have meant liberals were right. Every good conservatives knows it's far better to drown Miami and dry out Los Angeles than let any part of the liberal agenda succeed.What Sweden Can Tell Us About Obamacare
— Last month, for the 37th time, the House of Representatives voted to repeal Obamacare, with many Republicans saying that its call for greater government involvement in the health care system spells doom. Yet most other industrial countries have health care systems with far more government involvement than we are ever likely to see under Obamacare. What does their experience tell us about Republican fears?
Groundless paranoia has long been the conservative stock-in-trade on almost every issue — that's how you manufacture more angry white men, after all, which by the GOP's own admission is its key political strategy. Why should healthcare be any different?Antonin Scalia Does Not Believe in Molecular Biology
— Duh. He's a Republican. The GOP has spent the past decades very carefully and deliberately privileging willful ignorance over either science or evidence-based critical thinking. What else would we expect? (Via shsilver
QotD?: Would you stand and fight?
Writing time yesterday: 0.0 hours (too many errands, not enough time)
Hours slept: 5.75 hours solid
Body movement: 0.5 hours (stationary bike)
Number of FEMA troops on my block leaking intelligence secrets: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program
by Sharon Salzberg; Unseen Academicals
by Terry Pratchett
|[events] JayCon done come and gone
JayCon done come and gone. Except for breakfast this morning. And taking fjm
to the airport for her trip home, and so forth.
I would call it successful. We had guests from Australia, the UK, Canada, Texas, California, Idaho, Washington and Oregon. We had pizza and cake and cookies. We had before parties and after parties. We had a tiki ceremony.
And now despite no drinking I have the functional equivalent of a hangover.
Also, I was way too busy to take photos, but here's a couple from others:© 2013 Dierdre S.M.© 2013 Tamara Kaye Sellman
Thank you to everyone who came to celebrate with and for me. I love you all.
|The 16th Session of the USFKBC
This time, the 16th session will be exceptional.
I am going to hold a class on Wednesday, June 19th.
Wed !! Wed!! Make sure to come to the class on Wednesday, NOT Thursday!!
I will go to the Ho Chi Minh city of Viet Nam on 20th,
and I hope that I will tell you about my adventure.
Currently I have a problem that I have no one to cooperate with.
We need more members of the committee who will work for Olympics and many other things.
Anyway, I give you the material for the 16th session in advance.
I will see you on Wednesday dear friends!
(I also let you know the schedule of the 2013 US Go Congress.)
2013-06-19 USFKBC (US Forces Korea Baduk Class) 16th Session
|The 15th Session of the USFKBC
By accident, I dropped by Chungam Dojang before I went to Yongsan.
By the way, Chungam Dojang is one of the biggest dojangs in S.Korea,
and more than 100 students currently study Baduk hard to be professional players.
There was Ben, who once made a commentary game with me,
which was the game of Lee Sedol 9p and Kim Jiseok 9p,
the 3rd round of the final of GS Caltex Cup on Baduk TV, studying Baduk.
I asked Ben to go to the Yongsan Baduk Class. He said, "Cool!"
Being gentle and kind,
Ben taught the basic concept of "not filling your own territories" for us.
The next day, we held a party for the baduk class!
Our assistant lecturer Mr.Kim also came.
We ate so nice pasta and we had a wonderful time!!!
2013-06-13 The 15th Session of USFKBC (US Forces Korea Baduk Class)
|[conventions|repost] Announcing JayCon XIII - today!
ETA: We will be having my living wake, the JayWake on Saturday, July 27th. This will be a celebration of my life and a giant flip of the bird to my death. Including both a wake and a roast. Watch this space for more details.Every year, some people tell me that I need to announce JayCon early so they can get it in on their calendars. Every year, some people tell me I need to announce JayCon later, because they don't plan that far ahead. Sometimes, these are the same people. So starting now, and going on through the spring, I will be reposting this announcement with occasional edits or updates as needed.
In celebration of my natal anniversary, JayCon XIII, my 13th annual 37th birthday party, is Saturday, June 15th, 2013 (a/k/a today) from 2 to 5 pm at the Flying Pie in SE Portland. We're partying because I was born, and because
I have beat cancer again and again and again
we may not ever get to do this again.
If you can read this, you're invited. Prior JayCon experience not required.
Also, if you're coming from out of town, and you think I might not be aware of that, please contact me. There are some limited capacity extended festivities from Friday to Sunday.
Flying Pie Pizzeria
7804 SE Stark Street
[ Google Maps
]As is traditional for JayCon, Paul M. Carpentier is specifically not invited.
|[personal] JayCon preparty
Last night we had the JayCon preparty at Cartlandia
here in SE Portland. That's a pretty substantial food cart pod with a big central tent into which we fit about twelve or fourteen people for a couple of hours of food and chitchat. Always a good thing.
Today is of course JayCon. That should be loads of fun, as always. By Monday, things will have calmed down, and I won't know what to do with myself.
Also, it would be nice if I could stabilize my sleep schedule.