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[conventions] My Orycon programming schedule

My Orycon programming schedule, for them what wants it.

Friday, November 8

5:00pm – Panel: Living With Late Stage Cancer

Saturday, November 9

11:00am – Panel: Political Systems in SF

Sunday, November 10

10:00am – A showing of the film: Lakeside
12:00pm – Panel: Reprints

I will be arriving at the convention in the mid- to late afternoon, due to medical and legal appointments today. I’m booked for dinner tonight, but will otherwise be around tomorrow and Sunday to the degree my physical energy and GI issues permit. Sunday afternoon, I’ll be joining many other writers at the Powell’s Authorfest over at the Cedar Hills store.

See some, all or none of you there.

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[conventions] Still at Lonestarcon 3

Lisa Costello and I are still at Worldcon. [info]the_child and her mother arrived last night. Also, I saw my aunt and uncle and cousin Niki Lake yesterday for my cousin’s birthday. And been having fun hanging out with friends, especially Lezli Robyn. Yesterday she’d lost her voice, so I did her reading for her at her book launch.

Today, panels on the Lakeside movie and cancer, then Hugo rehearsals, then Hugo madness. Tomorrow afternoon we go home.

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[conventions] At Lonestarcon 3

At Lonestarcon 3. Very busy just keeping up, exhausted as well, so blogging continues irregular. [info]the_child and her mother arrive this evening to join me and Lisa Costello for the Hugos tomorrow. Also, the Lakeside premier was yesterday. It was very moving, and strange to see a movie about myself.

More to come when I have time and brainspace.

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[travel] In Oamaru, NZ, day two – cheese, steampunk and penguins

Yesterday, [info]the_child, Lisa Costello and I went with [info]danjite and [info]khaybee to the Whitestone cheese factory, Steampunk Headquarters, a playground featuring a giant rotating barrel like a human hamster wheel, a working Victorian bookbindery operated by Michael O’Brien, and the blue penguin colony. The Waterloo Productions crew came to some of this as well.

In order…

  • We ate some killer cheese, including the butteriest bleu I’ve ever put in my mouth, and saw the cheesemaking rooms
  • We saw a wonderfully bizarre steampunk installation that ran to rooms of kinetic art and found industrial sculpture, along with an outside area that was a playground for the machinery-inclined — this is a must-see destination for any serious steampunker
  • [info]the_child ran around inside a rotating barrle about 7 feet in diameter — so did I, which resulted in me learning not to try a human sized hamster wheel while walking with a cane
  • We spoke for a while to a fascinating fellow who lives la vida Victoriana to someplace well beyond the hilt, while also producing some amazing books-as-artifacts
  • We saw blue penguins, wee little fellows about a foot tall, come ashore and seek their nests — this was stupidly cute and somewhat silly, and a lot of fun
  • There were also coastal vistas, penny farthings, and random penguins on the city street

So, yeah, loads of fun.

On the flip side, touring while disabled is a stretch for me. I move a lot more slowly than I ever did when healthy, have to rest more, and simply cannot do some things. (In yesterday’s case, climb atop an armored apocalyptic railroad car, or walk on the beach.) Plus needing a bathroom about once per hour really puts a crimp in things. New Zealand seems very accommodating to the mobility impaired, and well supplied with decent public restrooms, so it is working out okay.

Also, we are taking tons of pictures, but do not currently have the bandwidth to upload them. You will see… More to come on almost all of the above topics, time and bandwidth permitting.

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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

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[links] Link salad likes bacon and eggs

Jay Lake Pre-Mortem Read-a-thon, Review the third: Escapement

Waterloo Productions is pleased to announce an advanced screening of their documentary Lakeside

AISFP 216 – Chicon 7 “Moral Ambiguity in Science Fiction” with Charles Stross, Jay Lake, Nancy Kress, Lissa Price and Bryan Thomas Schmidt — A podcast from last year’s Worldcon, including yours truly.

Fancy-pants — Ah, Clarion West.

The man behind the great Dickens and Dostoevsky hoax — Huh. (Via [info]danjite.)

Language Turned Convict — Cryptolects. Cool. This is terrific reading for people interested in world-building. (Via David Goldman.)

Know Your Giant Monsters!

A Digital Diaper for Tracking Children’s HealthDiapers have traditionally had one primary sensor — the baby inside them, who cries when wet &#mdash; but a company hopes to have its product collect data for a doctor. (Via Dad.)

Genetics Are Awesome, Photographer Explores Resemblance in Family Members — This is both fascinating and unnerving. (Thanks to Lisa Costello.)

Gay dogs prefer Ideal — Ah, context.

Alternative InputsUK artist Ryan Jordan led a workshop earlier this summer in Montréal, building musical instruments out of geological circuit boards, an experiment in terrestrial instrumentation he calls “Derelict Electronics.”

Watch a Levitating Magnet Sail Around a Möbius Strip! — Because SCIENCE!!! This is sooooo cool.

Pictures: The Story Behind Sun Dogs, Penitent Ice, and More — Penitent snow? (Via Daily Idioms, Annotated.)

NASA’s next Mars rover to prep for sample returns, human explorationSet to launch in 2020, it will look for past life and collect souvenirs.

The Deep Blue Color of an Alien World — This is so damned cool.

As ice melts, glass sponges invade Antarctica — Man, those whacky liberals will do anything to perpetuate their global warming hoax.

Nurses Explain the Healthcare Law in 90 Seconds

An Evangelical Intellectual Takes On Same-Sex Marriage, Grasps at Straw Men — Not sure what’s intellectual about this exercise in self-valorizing bigotry, but then the entire case against gay marriage is nothing but self-valorizing bigotry, so I shouldn’t be surprised. The idiocy starts with the declaration that marriage has been “always and everywhere” defined as between a man and a woman. Um, not in my Bible. Nor in Utah, that bastion of Mormon Proposition 8 bigotry. (Via Slacktivist Fred Clark.)

Siege by Taliban Strains Pakistani Girls’ Schools — This is what happens when you have religious law mixed with civil law. The American right with their obsessive meddling in education and women’s health is much, much closer to Sharia Law than any of their paranoid fantasies about secular liberals.

Satan was pro-choice, religious right claimsI’ve often felt that the people who most embody Satan’s values are the haters on the religious right. Ah, the conservative mind. Rational. Measured. Closed. Bugfuck. How does a sane human being come up with this crap?

The CIA And A Secret Vacuum Cleaner — Because freedom! This is freaking weird.

How a 30-year-old lawyer exposed NSA mass surveillance of Americans—in 1975Project SHAMROCK allowed the NSA to intercept telegrams sent by US citizens. (Via David Goldman.)

Southern Republican governors discover hurricanes, decide sequestration is bad — Like I keep saying, no one likes conservative policies when applied to them personally. Not even conservatives.

Colorado Counties Consider Secession Over Gun Laws, Oil Regulations — I think “sore loser” is the term they’re looking for here. The sane portions of America are supposed to suck it up on guns, restricting women’s health and evolution denial because Democracy! But God forbid conservatives live with any liberal-progressive ideas. Like paid vacations, paid sick leave, universal education or any of that other pinko guff.

Google to host fundraiser for gay-hating, climate-denying GOP Sen. Inhofe — Wow, “Don’t be evil” is certainly dead and buried if Google is supporting a revanchist troll like Inhofe.

QotD?: What did you have for breakfast?


7/12/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.0 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 248.6
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; Leviathan Wakes by James S.A. Corey

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[cancer|movies] Filming the Roadtrip to Mordor

From an announcement by Waterloo Productions:

Roadtrip to MordorAuthor Jay Lake has been given 3-6 months to live. Before he dies, he’s going to take his daughter to New Zealand. We want to make a documentary of their trip.

This is an effort parallel to the Lakeside documentary, also from Waterloo Productions. Producer Donnie Reynolds wants to follow me, [info]the_child and Lisa Costello to New Zealand. We’ll be touring both the South and North Islands in the company of the redoubtable team of [info]danjite and [info]khaybee. Donnie wants to fold this into the larger effort of documenting my life and death.

Note this fundraiser isn’t to pay for our trip. I did that out of the overage of funds from the Acts of Whimsy fundraiser last spring. That’s already down to all of you who supported and contributed with such incredible generosity. This effort is to get Donnie, his second cameraman and all his equipment from Texas to New Zealand and back. The whole project is off budget from Lakeside.

This is important to me because the trajectory of my illness means I’ll never make it to Antarctica like I’d hope. New Zealand will by my last great adventure shared with my daughter and with Lisa. I hope you’ll consider helping Donnie out, because we can tell more of my story, and [info]the_child‘s through this process.

I live every day in spectacle here in the decline of my life. Let us make of it a grand spectacle. If you so desire, you can help Donnie out here.

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[writing|photos] Rio Hondo continues

I awoke this morning from dreams of loss, conflict and Walter Jon Williams. This may have something to do with the excellent gumbo he cooked last night, followed by bananas Foster.

Donnie Reynolds (@dratz of Waterloo Productions) left yesterday. He was kind enough to finish cooking my momos Wednesday night when my feet gave out, but more importantly, interviewed me yesterday morning, then filmed the critique session for “Rock of Ages”. It was good critique, a combination of solid criticism and some important story points, along with validation that the story was doing enough of what I wanted it to do.

My two regrets here at Rio Hondo are that my feet continue to be troublesome, and that my trailing sun sensitivity issues courtesy of my friend Vectibix have not only prevented me from hiking (which given the state of my feet is probably a bad idea anyway) but even from going outdoors at all. I continue to wrestle with the emotional fallout from the recent diagnosis, but being here at the world’s greatest Writer Camp is allowing me to parse it in small bits while immensely enjoying my days.

Oddly, I’m not getting much writing or WRPA done. This done not bother me. I am on vacation, after all. I’m spending hours each day immersed in manuscripts and critique, and hours more in fascinating conversations about everything from Age of Sail combat to social media personae for authors. Not to mention publishing gossip, convention horror stories, plotting sessions and all the other things writers get to talking about when you cram us alone together in a few small rooms for a week.

Meanwhile, a few more photos of the faces of Rio Hondo:

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The marmot what hangs out in the lower parking lot — I did not have my 300mm lens on the camera body at the time, unfortunately

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Donnie Reynolds prepping the critique shoot

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David Levine, of whom I finally got several good shots

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Rick Wilbur pretending he doesn’t notice the camera

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Kim Zimring, reading

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Daniel Abraham, reading

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Diana Rowland and her Girl Power t-shirt

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Jim Kelly going for the high angle shot

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Oz Drummond, thoughtful

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The entire Rio Hondo crew, thanks to Donnie Reynolds piloting the camera

Photos © 2013 Joseph E. Lake, Jr. and Donnie Reynolds

Creative Commons License

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

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[cancer] Mortality blues and the illusion of brave competence

First, if you have a minute, go watch the new trailer for the Lakeside documentary. It does a pretty good job of capturing where I am right now.

I’ve been feeling my mortality again lately quite a bit. The recent trip to Austin, being in Omaha now by myself: lots of food for thought. Just settling in to the new reality, really. Not so different from the old reality, just a little worse. My oncologists have redefined hope from “finding a cure to return you to a normal life” to “finding ways to keep you going as long as we can.” Well, okay then.

I hadn’t really been expecting to be in this place at 48 years of age.

John DeNardo made a comment to me the other night at dinner about how much strength it must take for me to face this cancer and carry on. But it’s not strength. It’s just daily living.

I’ve been doing this for five years come April. In retrospect, the first year was easy. I spent most of it thinking I’d dodged the bullet. That’s what I was told, after all. Then there was the lung metastasis, almost exactly a year after the initial presentation. My lung was surgically resected, I did a tour of duty in chemo hell, and we thought again I’d be fine. Then it was my liver. Then it was my liver again. Then it was my liver a third time.

It’s not like I just woke up one day and found myself living in a cheap horror show. This is a very expensive horror show, constructed bit by bit over an extended period of time by my own body, its genetics gone awry and descending into the errant metabolic process that we label as cancer. I’ve been on a glide path into the valley of the shadow of death for years.

When I seem brave? That’s mostly a combination of routinization, inevitability and psychic numbness. When I seem competent? That’s just me doing what I must believe any rational person would do in my situation: gather the data, seek to understand the interpretations, and work at making the best decisions possible.

I want to live. What else could I do?

I’m probably going to die of this, probably in the next couple of years. That doesn’t make me want to live any less. Quite the contrary. I’m neither particularly brave nor particularly competent. I’m just a guy with cancer who sometimes cries for fear of his life and the existential terror at the bottom of his soul. Then gets up the next day and does the best he can. Surrounded by a world full of good, loving people who do the best they can.

When you think about it, there’s not a lot more to life than that.

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[cancer] Yesterday’s second opinion consultation

Yesterday, Dad, Lisa Costello and I met with an oncologist at M.D. Anderson. Donnie Reynolds was there, too, documenting.

The oncologist conducted a very thorough physical examination of me, and discussed my medical history in some detail. They then went over their view of my treatment options, focusing as my medical oncologist back in Oregon has recently come to do on treatments for life extension rather than treatments for cure.

Basically, there are two options. One is to continue with the treatment guidelines which we have been following. The other is to engage in investigational/experimental treatments.

Regarding option one, the oncologist at M.D. Anderson believes that the right way to proceed is to shift directly to Regorafenib, which is third down the line in the current treatment plan at my home hospital. Their logic for this is that we have effectively proven that the proposed continuation of Vectibix will be ineffective given my most recent metastases, and they feel it will be a waste of my time and effort.

The other option is to embark on a investigative/experimental clinical trial. The oncologist said if I were local to Houston, they would enroll me in a current trial combining Erbitux (Cetuximab, a close cousin of Vectibix/Panitumumab) and Aflibrecept, which the investigators believe will facilitate the effectiveness of the Erbitux.

The challenges of enrolling in an investigative/experimental clinical trial out of state are immense, and we are still working to understand the rewards. As the oncologist here in Houston said, there’s no particular guarantee of success down any path. They declined to give a firm recommendation, saying this choice was up to me. My parsing of their comments about effectiveness is that none of my choices have an especially high probability of success.

I did speak to a knowledgeable friend afterwards about the question of why I would choose to go the route of investigational medicine when there were still approved treatments available. Their response was that for late stage patients such as myself, Stage III clinical trials can sometimes be more effective. My cancer has proven resistant to most of the available drugs within the clinical guidelines, so doing something new has a better shot. Also, patients in clinical trials are monitored much more closely than patients in mainstream treatment, which can have a positive effect on outcomes.

I also spoke on the telephone yesterday evening with the M.D. Anderson oncologist, who confirmed they have talked to my medical oncologist back in Oregon about the treatment recommendations. I’ll be seeing the medical oncologist at home on Friday, so we can review these outcomes and consider next steps, such as whether to make a serious effort at working out the logistics of a clinical trial in Houston. This very much includes significant questions about the impact on [info]the_child, should I need to relocate to Houston for a while, not to mention chemo caregiving, finances, and so forth.

There’s still the potential wildcard of the genomic testing results, which I am expecting to see any day now. Also, we have a meeting today with the chief scientists from the group doing the clinical analysis, which will both shed more light and further muddy the waters.

At this point, it is very unclear to me which direction I might choose to follow. I have questions out to both the M.D. Anderson oncologist and my home hospital oncologist, and am awaiting more answers from them, which may influence my choices. It’s a tough call at best.

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