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[travel|conventions] Off to San Diego and Gaslight Gathering

In a couple of hours, Lisa Costello, [info]the_child, and I are off to the airport to fly to San Diego for Gaslight Gathering. Those fine folks have invited me to be their Guest of Honor. How could I say no?

This afternoon when we arrive, we’ll be visiting Illumina, the company that performed the primary analysis for my Whole Genome Sequencing. There I will give my talk on cancer and genomics from the patient perspective. After that, we’ll be the whole weekend at the convention.

The Gaslight Gathering folks have been incredibly kind and generous, offering me all sorts of support. I cannot thank them enough for the invitation, and very much look forward to spending the weekend with that crew. If you’re in southern California, especially San Diego, drop in and see me.

[travel|events] My upcoming appearance schedule, as it stands today

For those playing along with the home game edition of “Where’s Jay”, here’s my current appearance schedule. Subject very much to changes in my health, of course.

Date Event

Tuesday, April 23rd Wordos in Eugene, OR, for a discussion of my Nebula- and Hugo-nominated novella, “The Stars Do Not Lie” (with Lisa Costello in attendance)

Thursday, May 2nd Speaking at Illumina Corp in San Diego on Whole Genome Sequencing from the patient perspective (with both [info]the_child and Lisa Costello in attendance)

Friday, May 3rd through Sunday, May 5th Guest of Honor at Gaslight Gathering (with both [info]the_child and Lisa Costello in attendance)

Wednesday, May 8th Meeting with my oncologist to discuss current developments, the formal diagnosis and treatment plan

Friday, May 17th through Saturday, May 18th Nebula Awards Weekend in San Jose, CA (with both [info]the_child and Jersey Girl in Portland in attendance)

Everything after this point is subject to change depending on the exigencies of cancer treatment per my oncology consultation on May 8th

Sunday, May 19th through Sunday, May 26th Rio Hondo writing retreat in Taos, NM

Saturday, June 1st through Friday, June 7th Work trip to Omaha, NE (with Lisa Costello in attendance)

Saturday, 15th JayCon XIII [ jlake.com | LiveJournal ] here in Portland, OR (with various other festivities TBA around the weekend, pretty much everyone in attendance)

Friday, June 28th through Sunday, June 30th Locus Awards Weekend, Seattle, WA (with Lisa Costello in attendance)

Thursday, August 29th through Monday, September 2nd LoneStarCon 3, San Antonio, TX (with both [info]the_child and Lisa Costello in attendance)

[travel|events] Forthcoming travel and event schedule

Mostly just to have it out there, but also to give people who might want to catch up with me the chance to know where I’ll be, here’s my forthcoming travel and event schedule. As always, this is health permitting, though I should be clear through May regardless. I haven’t made plans past June except tentatively for Worldcon due to the significant uncertainly of my cancer status going forward.

April 10th-14th Paradise Lost, San Antonio, TX (Instructor emeritus)
Week of April 22nd Probably in Grand Rapids, MI a day or two for Day Jobbery, details TBA
May 2nd-May 6th Gaslight Gathering, San Diego, CA (Guest of Honor)
May 17th-May 18th Nebula Awards Weekend, San Jose, CA (Nebula Award nominee)
May 19th-May 26th Rio Hondo Retreat, Taos Ski Valley, NM
June 1st-June 7th Day Jobbery, Omaha, NE
June 15th JayCon XIII, Portland, OR
June 28th-June 30th Locus Awards, Seattle, WA
August 29th-September 3rd LoneStarCon 3, San Antonio, TX (Hugo Award nominee and Campbell Award co-presenter)

In most of these cases, I’ll either be at a public event, or host an open dinner. Watch for announcements.

[travel|conventions] Forthcoming event and convention schedule

Due to the unexpected moderation in my chemo series this spring, I am once more able to travel and attend public functions. As a result, here is my forthcoming schedule of events, conventions and public appearances. As always, these dates are contingent on my ongoing health status. I hope to remain healthy through the summer, but except for Worldcon, I’m not planning anything past June at this point. Also note there will probably be an Open Dinner in Houston, TX in the next week or so.

[cancer] Field notes from Cancerland, followup exam edition

Back to the oncology department

I am going back to the doctor today, to see my surgical oncologist for a post-operative examination. This will likely be an unalarming visit, as all the major shoes have dropped insofar as I know. On the other hand, I’ve thought that before, and then things have gotten worse. And worse. I plan to discuss the state of my tumors at excision, and some technical details around the genomic testing. From a purely somatic perspective, I am healing well. The incision is nicely closed up, my mobility is good, I’ve had no issues with adverse reactions. Largely thanks to the anesthesia regimen we adopted, this has been my swiftest and simplest surgical recovery to date.

Treatment

At this point, it is probably true that I will spend the rest of my life in treatment. That thought depresses me immeasurably. I’m going back on Vectibix early next month, and will remain on that drug indefinitely, until the next metastases appear. After that, I’ll cycle through alternating surgery and chemotherapy regimens until we can’t operate any more or we run out of drugs. Then I’ll be on palliative care, with its own treatment protocols. Not ever leaving treatment again has a lot of implications, from sexual health (all of my bodily emissions are toxic when I’m in chemotherapy, not to mention pernicious erectile dysfunction) to cognitive functions. The bright side, such as it is, is that the forthcoming Vectibix regimen will be without the FOLFOX backbone, which means my writing brain should stay alive.

Public Appearances

Gaslight Gathering, a steampunk con in San Diego, CA (May 3rd through 5th of this year) has invited me to be their Guest of Honor. I am filling in for the far more worthy Cherie Priest, who had to step down for personal reasons. The con com was very patient in negotiating with me about my health status, and waiting for my oncology visit of this past Monday before I could confirm anything. Given that I have a CT scan in March, it’s slightly possible I’ll throw a met before May, but I think we’re more likely to find something on the May or July scans, so I felt like I could commit in good conscience. I’ll be taking [info]the_child with me to San Diego.

Still working on a possible con appearance over Memorial Day weekend, and I’ve bought a WorldCon membership in a fit of possibly unwarranted optimism. There’s going to be some neat cancer-related stuff going on at WorldCon, including the premiere of Lakesideimdb ] from Waterloo Productions. Plus I’ve been asked to present the Campbell Tiara again at this year’s Hugo ceremony. So I’d really like to be there. I just have to get through three rounds of scans clean. Sigh.

Paperwork

The paperwork continues agonizingly dense and complex. This doesn’t even count extraneous issues of errors in the process. Without my Dad (a retired senior diplomat and US ambassador, and thus very familiar with navigating complex administrative processes) chasing 95% of it on my behalf, I don’t know what I’d do. I’m amazed anyone survives being ill in our system without going broke or just dying of the workload. And this is me talking from the perspective of someone with a lot of white and professional privilege, good benefits, and decent resources. Not to mention some fantastic fundraising friends. As I’ve said before, if I were the guy down the street, what would I have done up until now?

Writing

I am writing again. Put down 1,000 words yesterday on a spec novella. I’ve also responded to a very interesting proposal for some nonfiction work. And I’m beginning to explore how to write my book about my own process of death and dying. The working title is Jay Lake’s Book of the Dead, though I’m sure it will be something else eventually. I have two different friends helping me on that, one editing my existing cancer blog posts, the other cueing up to finish the book whenever I become too ill (or too dead) to continue writing it myself. And I’m eyeballing Original Destiny, Manifest Sin. So, yeah. Not giving up on that.

[links] Link salad knows you’re gonna fly high, you’re never gonna die

Fuck Yeah SciFi/Fantasy WOCAuthor Scott Lynch responds to a critic of the character Zamira Drakasha, a black woman pirate in his fantasy book Red Seas Under Red Skies, the second novel of the Gentleman Bastard series. Plus Anne Bonny. Duh. (Via [info]rekre8.)

The Misty Mountains song from The Hobbit — This gets me every time, even in this European cover version from str8bvoices.

Notes After a Viewing of Red Dawn (2012)The Mumpsimus is interesting. Long but worth the read if you’re interested in either film criticism or politics.

‘Bird Buggy’ keeps noisy parrot quiet — and mobile — I for one welcome our new psittacine overlords. (Snurched from @jeremiahtolbert.)

Tennis star Novak buys up world’s supply of donkey cheese at £400 a pound for new restaurant chain — Because… I got nothing. Except that I want to try it. (Via [info]danjite.)

Cafe Ginza: 1941 — I continue to be fascinated by this image, both for haunting historical reasons (note the date, and probable fate of all the business owners and families on this street), and for the curious details, like the name of the doctor on the sign in the right edge of the frame. Even the movie posters on the wall of the cafe are interesting.

Apple Maps ‘is life-threatening’ to motorists lost in Australia heat — Hey, Apple. Your Maps app is the Newton of this generation. Give it up already. Enough with the corporate dick waving. Can we please have our damned Google Maps back on the iPhone?

On “Otherness” at Christmas — The Velveteen Rabbi writes about being Jewish at Christmas. Highly recommended reading for any Christian who somehow imagines they are part of an imperiled religion in modern America. I think there’s something profoundly valuable in the de-centering experience of recognizing that one’s own paradigm is not the only paradigm. But I recognize that it isn’t always easy or comfortable. And if it isn’t happening in a reciprocal way — where I recognize that my way isn’t the only way, but so does the other guy; specifically, so does the person with the privilege of being in the dominant / majority position — it can feel alienating and painful. Everyone else is having a great time and I’m outside the party — alienating and painful. That mainstream experience is “normal,” and I feel perennially “other” — alienating and painful.

Climate Change 101: Separate Fact from Fiction

Same-Sex Issue Pushes Justices Into Overdrive — I’m extremely dubious of the assumption that the narrow ideologues on the Court’s Right are going to place any emphasis at all on public opinion. They’ve proven time and again they’ll place the conservative political agenda above either the national interest or the Constitution. Scalia’s tortured reversal of a lifetime of his own legal reasoning in order to avoid supporting the Obama administration on the ACA ruling was just the latest example.

Likely Increase in Births Has Some Lawmakers Revisiting CutsThe latest Health and Human Services Commission projections being circulated among Texas lawmakers indicate that during the 2014-15 biennium, poor women will deliver an estimated 23,760 more babies than they would have, as a result of their reduced access to state-subsidized birth control. And it’s costing the state a lot of money in post-natal healthcare. Gee? Ya think? Obviously it requires a grasp of that nasty liberally-biased reality to understand the causal link between availability of birth control and birth rates.

Laura Ingraham Has the World’s Worst Imagination — Conservative commentator outraged at liberal-progressives doing with Obama exactly what she did with Bush. More of that justly famed conservative intellectual consistency in action.

?otD: By the way, which one’s Pink?


12/10/2012
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.0 hours (fitful)
Body movement: 0.5 hours stationary bike ride
Weight: 216.4
Number of FEMA troops on my block dissolving traditional marriages and plastering OBAMA bumper stickers on SUVs: 0
Currently reading: The Hydrogen Sonata by Iain M. Banks

[child] She comes home tomorrow, musings on parenting and mortality

[info]the_child comes home tomorrow on the evening train from Seattle. [info]lillypond, a/k/a my sister, is picking her up at the train station at the same time I’m picking [info]seanan_mcguire up at the airport, then we’re all meeting for dinner, along with [info]mlerules, Team E— and [info]kenscholes (assuming he’s over his case of the screaming crud by then). Which will be an apropos welcome home for her, as the last time I saw my kid was when I took her to the George R.R. Martin party in Seattle two weeks ago.

This summer she has flown to California by herself. She is training back from Seattle tomorrow by herself. She has spent time with her grandmother learning to use the Portland area bus and light rail system, and is now allowed to make trips around town by herself. She is also seriously talking about what kind of job she wants next summer, when she’s fifteen and a half. One of the current favorites of hers is working in the office of our family attorneys (with whom she is friends) because, “Lawyers know how to get people to tell them things, and I’d like to learn that.”

I think my little kid is growing up.

Every step closer to adulthood, to maturity, is one less brick on my chest over the cancer. Perhaps my greatest fear is dying while she’s still in childhood. It is a terrible thing to lose a parent at any age, but that is the way of the world. (Consider the alternative, that the parent loses their child.) Losing a parent before you’ve really gotten a solid start on finding yourself is much, much harder.

As it happens, there has been a recent cancer death in Mother of the Child’s extended family, which has me pondering once again parenthood and illness. And of course, the leading echoes of what is to come for me on these next tests, as always. To see [info]the_child being a little more mature, increasingly self-reliant, and better directed… those are a comfort and a blessing. They are to every parent, I know, but it all has a special meaning to me.

Love that kid.

[personal] On the road again

Not much to say this morning. No wit or erudition about life, love, writing, cancer or parenting. Just me, loitering at the home of [info]bravado111 after a long drive to Seattle, a lovely dinner with [info]e_bourne, and the Locus Awards pre-party.

We’re hitting breakfast shortly, then a day at the awards, then I really am off for a few days. Meanwhile, [info]the_child flies to California this morning.

Wherever you are, whatever you’re doing, relax as much as you can and be well. That’s certainly my plan.

[child] And away she goes; as do we all

This morning [info]the_child departs with the rest of her class for their eighth grade trip. They’re going to California for five days, to climb redwoods and ride horses and hike up mountains. She’ll be back in time for JayCon, but most of this week will be quieter than usual around Nuevo Rancho Lake.

This is a bigger deal than might seem obvious. She’s a Waldorf kid. In that system, the teacher stays with the class from first through eighth grade. So this is a good-bye trip for Mr. C— and the eighteen kids in his class. They’ve been like family to one another since 2004. More than half her life. Some of the kids she’s going with she started mixed age kindergarten with at age three and a half. Eleven years she’s been with them.

It’s all about transitions this month in the Lake household. Me, purging my basement. [info]the_child leaving behind her grade school. My birthday coming up, celebrated in health and happiness for the first time in four years.

So, yeah.

And my daughter grows up another step. Maybe, so do I.

[travel|food] Having fun in Newark, CA

Last night’s open dinner at the Bombay Garden here in Newark, CA, was fun. We had about a dozen people show up. LiveJournal is down as I draft this post, so I can’t check LJ to namecheck everybody by their Official Internet Handles, but there was good spread of folks from dear old friends to brand new acquaintances. Author Juliette Wade brought her kids, who at about 9 and 7 reminded me a great deal of me and my sister at their age. Editor Gabrielle Harbowy was there, with Mr. G.H. and her assistant F—. K—, T— M— and her husband, Springtime Creations and Mr. S.C., as well as Dave a/k/a Dad. (I hope to Ghu I didn’t leave anybody off…)

Food at the Bombay Garden was pretty good, the service could kindly be described as eccentric, but that didn’t matter. It was a good bunch of people, and we hung out in the restaurant for about 2.5 hours.

Walked for an hour this morning, now gearing up for a day of Day Jobbery. Flying home tonight. With luck, I’ll finish the current section of Their Currents Turn Awry on the plane.

[travel|food] Repost: Open dinner in Newark, CA (East Bay) April 24th

I will be in the East Bay area tomorrow on business. Apologies for the late notice, but I’m announcing an open dinner at the Bombay Garden in Newark, CA [ Google Maps ] at 6:30 pm, Tuesday, April 24th.

Let me know in comments if you think you’ll be there so I have an approximate headcount. If you’ve already RSVP’ed, I don’t need you to RSVP again.

I will be re-posting this Tuesday.