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[links] Link salad jets out to San Diego

The Story Coaster — Hahahah. (Via David Goldman.)

Lakeside Backstory — More on the movie, and me, from Waterloo Productions.

Rev-e-rie – Jay Lake, Cancer, and God #4: Prevailing — My friend UMC pastor Dave Raines continues his meditations on life and death.

How Doctors Die — Yeah. Sigh. (Via Ellen Eades.)

Finding Cancer Cells in the BloodTechnologies that can pull tumor cells from patients’ blood are giving researchers an unprecedented look at cancer.

How Smart Dust Could Spy On Your BrainIntelligent dust particles embedded in the brain could form an entirely new form of brain-machine interface.

Hawkmoths zap bats with sonic blasts from their genitals — I’ve been on dates like that. (Via David Goldman.)

Design Drawing for Avanti — Oooooh.

Time-lapse video of Interstate 84 highway repaving project — (Via Lisa Costello.)

T. rex leaves tooth in would-be lunch’s tail, paleontologists find it

New Map Shows Where Nature Protects U.S. CoastCoastal habitats like reefs and marshes protect people from natural disasters—in the right locations.

Hunger Games, U.S.A.Something terrible has happened to the soul of the Republican Party. We’ve gone beyond bad economic doctrine. We’ve even gone beyond selfishness and special interests. At this point we’re talking about a state of mind that takes positive glee in inflicting further suffering on the already miserable. Conservatives have convinced themselves that there is a “culture of dependency”, and that breaking the cycle of that culture is for the public good. Deep cruelty cloaked in high minded policy is still deep cruelty.

QotD?: Going to Comic-Con?


7/16/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 6.0 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 249.6
Number of FEMA troops on my block supplying black kids with Skittles: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg; Leviathan Wakes by James S.A. Corey

[cancer|repost] JayWake, in which I host my own funeral

Small Clockwork Departure You are invited to my pre-mortem wake and roast, a somewhat morbid, deeply irreverent, but joyous celebration of me. This is a time for celebrating my life, loves, and dark, twisted sense of humor. Bring your stories (hysterical, at my expense), your tasteless jokes, and any and all expressions gleefully macabre. Come party with the man who has never passed up the chance to poke cancer in the eye and laugh about it.

Date/Time:
Saturday, July 27, 6:PM – ?

Location:
Holiday Inn Portland Airport
8439 NE Columbia Blvd
Portland, OR 97220

We are deeply grateful to the Cascade Writers’ Conference who is gifting us with the cancellation of their Saturday evening programming so that their members can attend JayWake. In addition, they have offered the unused space for our celebration. We are humbled by their generosity.

We are also deeply grateful to Tom Doherty and Tor Books for their very generous support of JayWake.

We are arranging for a group rate for out-of-town guests at the Holiday Inn. Please email tammyjoy6@gmail.com for information on the hotel.

Food and Libations:
There will be a buffet dinner for guests who RSVP. RSVP-ing tells us how many people to prepare for. Please email jaywakereg@gmail.com or reply to the Facebook event to RSVP. Donations will be accepted (but not required) to offset the cost of the meal.

Roast:
The Roast will begin at about 7:30. Be warned: the jokes and stories contained herein will not only push the boundaries of good taste, they will leapfrog over the boundaries blowing a raspberry. This is not a time to say how I touched your life. This is a time to say how I touched you inappropriately. Please contact jaywake.questions@gmail.com for information on being a scheduled speaker.

Sandra Tayler and the JayWake Book
The mighty @sandratayler is working on the Jay Wake Book. She’s looking for pictures, stories and other material about me. As Sandra says:

Our friend Jay has been diagnosed with terminal cancer and is hosting his own wake, Jay Wake, which Howard and I are attending. We know that other friends of Jay would love to be able to come, but can’t for a multitude of reasons. The Jay Wake Book is a project to let everyone participate in the celebration of Jay. I’ll be collecting stories, art, and photos of Jay to compile into the book. The first iteration of this book will be presented to Jay at Jay Wake. The second iteration will include stories and photos collected at Jay Wake. It will be made generally available either in electronic or print version.

Please contribute if you can.

Donations:
We will be accepting donations to offset the cost of the meal and event. Use the PayPal button below, or contact jaywake.questions@gmail.com if you’d like to donate in another way.

T-Shirts:
T-shirts with a black and white line art version of the art below, by Howard Tayler, will be available. Contact jaywake.questions@gmail.com if you’d like to order one.

Planning to Attend?
If you are planning to attend, please RSVP to jaywakereg@gmail.com or at the Facebook event.

Clockwork Departure
Art © 2013 Howard Tayler. Reproduced with permission.

Questions? Email jaywake.questions@gmail.com.

This post is adapted from the JayWake page here.

[cancer] FIeld Notes from Cancerland, coming home edition

Feet and Other Side Effects

Just these past couple of days, the Regorafenib has decided to talk to me through my feet. Last night whilst trying to fall asleep, I experienced a deep, dull ache in my left foot, while my right foot itched and burned terribly. It was quite distracting. Also a bit odd in the asymmetry. Clearly I should be icing more. In other news, my GI continues wonky in fairly inconsistent ways. Which admittedly is hardly news, but it’s annoying in that I keep having to adapt my behaviors and expectations. For example, the drive home from Long Beach yesterday afternoon included about 45 minutes of me in roadside restrooms. Given that it’s normally a three-hour trip, this is a significant factor.

More Dreams

Last night, I had another weird dream, though my recollection of this one is more fragmented. This one also had a multimedia element. But instead of Dick and Jane, the vernacular was graphic novels. Specifically Batman as a seventeenth century witchfinder in Dutch Gotham. Which I was apparently scripting or possibly penciling. And another round of trying to find people, of losing track of tasks and belongings and details. Another dream about limitation, with a whiff of escape.

More Basementing

Part of the tribe is coming over this afternoon for what will probably be the final push through my basement. There’s a significant number of books to go to Powell’s, and my own backstock to be dealt with. Plus general furniture management, tool consolidation, cleaning up, and arranging. I mean, what do I do with my Dad’s late 1940’s American Flyer train set? He doesn’t want it back, and it seems almost criminal to let go of that. And so on and so on. Packing up a life isn’t easy.

Disability and Finances

My Short Term Disability claim was formally approved yesterday. Long term claims progress on various fronts, but they all have 3-5 month lead times. I am having to provide exhaustive financial documentation to the financial planners who are helping me sort out my estate planning and the transition for Mother of the Child and [info]the_child after I’m gone. So that stays busy, but fairly soon will be out of my hands.

Cancer and Sex

Lisa Costello and I were discussing my libido and my sexuality yesterday. I won’t go into details in this post, but may elaborate later under cut in a TMI post. Suffice to say that under the influence of both the illness and the treatments I’ve shifted in some ways which are probably permanent. It’s an interesting transition, viewed intellectually, but is also another form of narrowing and focusing of my life.

Denial

I have not had a meaningful argument with my parents since I stopped being a teen-aged asshole. We get along well, and our worldviews overlap substantially enough that there aren’t many points of potential critical disagreement. Plus my whole family runs on the same rubric that I do: there isn’t enough kindness in the world, so you may as well be nice. However, Dad and I almost got into one this week when talking about finances. Specifically we were discussing how [info]the_child‘s private school tuition would be paid this fall, when I will be very financially constrained, and how it will be paid in future years. I commented that the life insurance settlement would take care of the coming years. He got kind of upset with me.

Dad thinks I’m too negative. So does [info]the_child. But I know what I know. There’s close to two dozen tumors, possibly more, growing very rapidly in my liver and lungs and abdominal cavity. If the Regorafenib works, we might buy as much as a year of extra life. When it fails, now or later, we’ll actively pursue options for clinical trials. I’m not giving up. Not an inch.

But I cannot afford hope. In the course of this disease I have been confronted time and again with circumstances more dire than even my deepest fears. Hope is just a recipe for emotional brutalizing. I always expect the worst these days, and I am rarely disappointed.

This is what keeps me alive.

It’s hard for Dad, or my daughter, or many of the other people in my life to understand that attitude. But it’s the only way I get out of bed in the morning. Whatever the pathological opposite of denial is, that’s what I practice. Here I am.

[links] Link salad will strain once again to the sound of the gulls

Tor Books has provided some very generous support to JayWake — Thank you Tom, Beth and everyone.

Deadlines — Writers talking about their own deaths. (Thanks to AH, via [info]tillyjane, a/k/a my mom.)

The Intoxicating Fear of Language Immersion — Ta-Nehisi Coates continues to wax brilliantly on his time in Paris.

The N-word on the 4th of JulyThe flight home to see my family for the holiday was a tearful, shameful affair. I had to say something. But what? (Via Slacktivist Fred Clark.)

Physics and the birth of the emoticonCarnegie Mellon University alumni trace the origin of the smiley to a group of computer scientists discussing a physics puzzle in 1982. (Via David Goldman.)

What’s Your Social Media Genotype?Your pattern of behaviour on Twitter can be defined by a simple “genotype” and used to predict your future behaviour, say network researchers.

The Scrotum Is NutsWhy are testicles kept in a vulnerable dangling sac? It’s not why you think.

DNA analysis suggests Lake Vostok harbors animal life — This is cool. So to speak.

Parts installed “upside down” caused Russian rocket to explode last week — Umm…

Why the insurance industry won’t save us from climate change — As Fred Clark says, “Insurers and reinsurers have too much skin in the game to mess around with the lies and legends and delusions of climate denialists. They can’t afford to play partisan games with the data because their whole business model depends on getting the facts right.” (Via Slacktivist Fred Clark.)

FBI Discriminates Against American Muslims & lets White Terrorists Off the HookRight-wing extremists have committed far more acts of political violence since 1990 than American Muslims. That law enforcement across the country hasn’t felt similarly compelled to infiltrate and watch over conservative Christian communities in the hopes of disrupting violent right-wing extremism confirms what American Muslims know in their bones: to be different is to be suspect. Duh. Any Republican will tell you it’s not terrorism if conservative white men do it, it’s patriotism. Eric Rudolph, anyone?

An Egyptian boy explains the politics of his country — This kid is awesome. (Via [info]danjite.)

Indiana GOP passes law making it a crime for clergy to perform gay weddings — That whole separation of church and state thing is clearly for liberal pussies. The strict Constitutionalists in the GOP have made it so. Are you proud of your Republican party?

QotD?: Will you beg for strength? For gentle power?


7/10/2013
Writing time yesterday: 0.0 hours (vacation)
Hours slept: 5.75 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 250.2
Number of FEMA troops on my block building mandatory gay marriage halls: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg; Snuff by Terry Pratchett

[cancer] Progressing on Regorafenib

Today is the beginning of week three of series two of my course of treatment on Regorafenib. Things are going rather better than the were in series one at this point. I think it’s accurate to say that this medication and I have achieved an uneasy truce.

It’s not clear to me if I’m actually experiencing reduced side effects, or if we’re just much better at managing them. The latter, surely, but the former may also be playing a role.

I woke up this morning with my feet hurting, which is pure hand-foot syndrome, but they don’t hurt nearly as much as they did in the first series. We’ve done a lot of care, though. Gel inserts in my shoes, padded house slippers, foot elevation whenever possible, minimizing my standing and walking time, regular applications of udder ointment with urea, avoidance of heat, pressure or friction, use of a cane to shift my weight and slow down my gait, icing my feet several times per day, and so forth. Likewise analogous measures for my hands. I still get skin sloughing off on hands and feet, and still have the problems of gripping and grasping.

I experience a lot of fatigue. I also have sleeping problems, though we’ve got me on a medication combination of Trazodone and Lorazepam that seems to help a fair amount. My mouth issues are under control thanks to the dreadful combination of low sensitivity toothpaste, saltwater rinse, baking soda rinse, and Lidocaine mouthwash. My GI is fairly terrible, and there’s not much we can do about that, because the medications tend to leave me worse off than what I started with. As for the cognitive impacts, there is nothing to be done except weather them.

All in all, with a great deal of management, this drug is survivable.

The question is whether it is effective.

We have a CT scan two weeks from today to ascertain this. That moment will tell us whether I die in six months or so, or whether I might have another year or more. CT scans always stress me out and make me feel weird. This is because that is the moment when things unknown become known, even if I don’t find out for several days.

This scan tells us how long I have before the death sentence I am living under is carried out by the tiny executioners swarming through my liver, lungs and abdomen.

My liver aches almost all the time now. There’s no way to know whether that’s a direct effect of the cancer, residual surgical pain (which can last for years), a drug effect, a stress response, or psychosomatic. Possibly some combination of all those things. Over the next two weeks, as the scan draws near, I will begin unraveling from the stress of the impending scan. Will my liver ache all the more?

We don’t know, and we won’t know until the new tumor census is done. But for now, I survive the medication. I’ve been at this long enough to know that drug tolerance is neither a good nor a bad signal of drug effectiveness. At least I’m not profoundly miserable every minute of the day.

[cancer] Last night I had a meltdown

Lisa Costello and I were at the Clarion West party for a little under an hour yesterday evening before heading back to our hotel. We were both overwhelmed by the sheer volume. I saw a lot of people I don’t see often, and in many cases, after today will never see again. I was navigating the party slowly, with my cane and my protective gloves. Both of these things served as obvious markers of my decline.

Back at the hotel we each sorted out our evening routines and got close to sleep. I had my trazodone and lorazepam combination on board. Trying to settle down for the night, I felt overwhelmed all over again. That quickly brought me to tears of anger and despair. All I could say is, “I want my life back.”

I want to be able to go to a party and last more than an hour.

I want to walk quickly down a hall.

I want to be able to say to faraway friends, “See you again soon.”

I want the people around me to deal with their stuff without being distorted by my illness and my needs.

I want to write.

I want to plan ahead.

I want my old energy, my old charisma, my old busy-ness.

I want my life back.

Instead I get fatigue, tears, and ever shorter horizons and an ever smaller existence.

[links] Link salad sets out to lose another award

How to Report Sexual Harassment, by Elise Matthesen — This is important. If you have not read the piece already, please do so.

A Good Death — This. (Thanks to Lisa Costello.)

Dinotopia in Legos — So cool, this kind of thing. (Snurched from art guru James Gurney, Mr. Dinotopia himself.)

Human Dinosaurs Psittacosaurus Went from Moving on Four Feet to Two — Misleading headline, pretty interesting story.

From ‘Reefer Madness’ to Woodstock and beyond, marijuana’s zigzag march toward mainstream — I don’t do 420 myself (not even medical marijuana), but I have never understood why a society that so widely tolerates alcohol is so prudish about dope. It makes no sense whatsoever.

Processed carbohydrates are addictive, brain study suggests — Also, this just in: sky is blue.

Faces of Earth: A Mapping Contest Between Man and Machine — Pareidolia writ very large indeed.

Everything you wanted to Know About NSA Surveillance *but were afraid to ask

Anonymous Hacks Neo-Nazis, Finds Ron Paul — Quelle surprise. (Via [info]danjite.)

Suspect ‘Science’ — A very detailed case study of how conservative money buys respectable research that is in point of fact just as intellectually fraudulent as the conservative principles on which it is based. In this case, the idea that LGBT parents can’t possibly raise healthy kids. This is precisely the same way Republicans are forced to approach elections: if you can’t prevail on the merits, cheat with vote suppression and concealment of your own positions. Since apparently modifying their positions based on actual evidence is completely out of the question. (Via Slacktivist Fred Clark.)

QotD?: Are you in Seattle for the Locus Awards?


6/29/2013
Writing time yesterday: 0.5 hours (WRPA, plus time at the Clarion West party as well)
Hours slept: 6.5 hours (solid but rough)
Body movement: 0.0 hours (in hotel)
Weight: n/a (n hotel)
Number of FEMA troops on my block attempting to secure minority voting rights despite the recent Supreme Court ruling: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg; Snuff by Terry Pratchett

[cancer|repost] JayWake, in which I host my own funeral

Small Clockwork Departure You are invited to my pre-mortem wake and roast, a somewhat morbid, deeply irreverent, but joyous celebration of me. This is a time for celebrating my life, loves, and dark, twisted sense of humor. Bring your stories (hysterical, at my expense), your tasteless jokes, and any and all expressions gleefully macabre. Come party with the man who has never passed up the chance to poke cancer in the eye and laugh about it.

Date/Time:
Saturday, July 27, 6:PM – ?

Location:
Holiday Inn Portland Airport
8439 NE Columbia Blvd
Portland, OR 97220

We are deeply grateful to the Cascade Writers’ Conference who is gifting us with the cancellation of their Saturday evening programming so that their members can attend JayWake. In addition, they have offered the unused space for our celebration. We are humbled by their generosity.

We are arranging for a group rate for out-of-town guests at the Holiday Inn. Please email tammyjoy6@gmail.com for information on the hotel.

Food and Libations:
There will be a buffet dinner for guests who RSVP. RSVP-ing tells us how many people to prepare for. Please email jaywakereg@gmail.com or reply to the Facebook event to RSVP. Donations will be accepted (but not required) to offset the cost of the meal.

Roast:
The Roast will begin at about 7:30. Be warned: the jokes and stories contained herein will not only push the boundaries of good taste, they will leapfrog over the boundaries blowing a raspberry. This is not a time to say how I touched your life. This is a time to say how I touched you inappropriately. Please contact jaywake.questions@gmail.com for information on being a scheduled speaker.

Sandra Tayler and the JayWake Book
The mighty @sandratayler is working on the Jay Wake Book. She’s looking for pictures, stories and other material about me. As Sandra says:

Our friend Jay has been diagnosed with terminal cancer and is hosting his own wake, Jay Wake, which Howard and I are attending. We know that other friends of Jay would love to be able to come, but can’t for a multitude of reasons. The Jay Wake Book is a project to let everyone participate in the celebration of Jay. I’ll be collecting stories, art, and photos of Jay to compile into the book. The first iteration of this book will be presented to Jay at Jay Wake. The second iteration will include stories and photos collected at Jay Wake. It will be made generally available either in electronic or print version.

Please contribute if you can.

Donations:
We will be accepting donations to offset the cost of the meal and event. Use the PayPal button below, or contact jaywake.questions@gmail.com if you’d like to donate in another way.

T-Shirts:
T-shirts with a black and white line art version of the art below, by Howard Tayler, will be available. Contact jaywake.questions@gmail.com if you’d like to order one.

Planning to Attend?
If you are planning to attend, please RSVP to jaywakereg@gmail.com or at the Facebook event.

Clockwork Departure
Art © 2013 Howard Tayler. Reproduced with permission.

Questions? Email jaywake.questions@gmail.com.

This post is adapted from the JayWake page here.

[cancer|events] JayWake, in which I host my own funeral

Small Clockwork Departure You are invited to my pre-mortem wake and roast, a somewhat morbid, deeply irreverent, but joyous celebration of me. This is a time for celebrating my life, loves, and dark, twisted sense of humor. Bring your stories (hysterical, at my expense), your tasteless jokes, and any and all expressions gleefully macabre. Come party with the man who has never passed up the chance to poke cancer in the eye and laugh about it.

Date/Time:
Saturday, July 27, 6:PM – ?

Location:
Holiday Inn Portland Airport
8439 NE Columbia Blvd
Portland, OR 97220

We are deeply grateful to the Cascade Writers’ Conference who is gifting us with the cancellation of their Saturday evening programming so that their members can attend JayWake. In addition, they have offered the unused space for our celebration. We are humbled by their generosity.

We are arranging for a group rate for out-of-town guests at the Holiday Inn. Please email tammyjoy6@gmail.com for information on the hotel.

Food and Libations:
There will be a buffet dinner for guests who RSVP. RSVP-ing tells us how many people to prepare for. Please email jaywakereg@gmail.com or reply to the Facebook event to RSVP. Donations will be accepted (but not required) to offset the cost of the meal.

Roast:
The Roast will begin at about 7:30. Be warned: the jokes and stories contained herein will not only push the boundaries of good taste, they will leapfrog over the boundaries blowing a raspberry. This is not a time to say how I touched your life. This is a time to say how I touched you inappropriately. Please contact jaywake.questions@gmail.com for information on being a scheduled speaker.

Donations:
We will be accepting donations to offset the cost of the meal and event. Use the PayPal button below, or contact jaywake.questions@gmail.com if you’d like to donate in another way.

T-Shirts:
T-shirts with a black and white line art version of the art below, by Howard Tayler, will be available. Contact jaywake.questions@gmail.com if you’d like to order one.

Planning to Attend?
If you are planning to attend, please RSVP to jaywakereg@gmail.com or at the Facebook event.

Clockwork Departure
Art © 2013 Howard Tayler. Reproduced with permission.

Questions? Email jaywake.questions@gmail.com.

This post is adapted from the JayWake page here.

[cancer] Things I want to do before I die

Things I want to do before I die, time, health and funds permitting:

  • Take a long road trip through the American west with [info]the_child
  • Take [info]the_child to New Zealand to visit [info]danjite and [info]khaybee.
  • Take [info]the_child to Antarctica.
  • Visit the railroad graveyard in Uyuni, Bolivia with a really good camera in hand.
  • Visit the city of Petra in Jordan.
  • Go back to Taiwan (where I was born and spent my grade school years) one more time.
  • Write (well, finish) Original Destiny, Manifest Sin.
  • Write (well, finish) Jay Lake’s Book of the Dead.
  • See [info]the_child graduate from high school.

With the exception of writing one or both books, none of these are likely to happen for a bunch of very good reasons, money and time especially, but they’re what’s on my mind. Funny how they’re almost all travel-oriented.