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[conventions|travel] I will be in the Seattle area at Norwescon this weekend

Lisa Costello, [info]the_child and I will be heading to the Seattle area tomorrow for Norwescon 36. This will only be the second time in over a decade that I’ve attended a convention as a civilian rather than being on programming, so I actually have no idea what my schedule will be. Mostly BarCon, I suspect. I may turn up at one or two panels.

No Open Dinner, since I’ll be at the Norwescon hotel from Thursday afternoon until Sunday afternoon, but if you want to see me, come on by. I shouldn’t be hard to find.

[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, miscellaneous edition

On being exhausted, albeit for good reasons

As previously mentioned, Friday afternoon I drove [info]the_child to Seattle. As a result of that, I exhausted myself and slept long and deeply Friday night. A familiar sleep, one I normally associate with healing. Yesterday Mrs. [info]bravado111 and I cooked through much of the midday, which was followed by an open house than ran about seven hours. A number of my Seattle-area friends dropped by. It was great good fun, and I loved seeing a bunch of people, but a lot of things hurt well before the end of the evening. Again I slept long and deeply last night. Again, a healing sleep. Today around lunch time I need to drive home to Portland. Sense a developing theme here?

A bit more on fiction from Original Destiny, Manifest Sin

A couple of days ago, I posted a bibliography of published short fiction from my novel-in-progress Original Destiny, Manifest Sinjlake.com | LiveJournal ]. Of course my Swiss cheese post-chemo brain forgot something. “Tom Edison & His Telegraphic Harpoon” was published in Weird Tales #345, June/July 2007. There may be another besides that, but I am having trouble sorting it out. Stoopid chemo brain.

The billing problem with my hospital

Remember my ten phone calls to talk to seventeen different people about my insurance company not being recognizing my oncologist as in-network? [ jlake.com | LiveJournal ] As of this past Thursday, I have now spoken to twenty-one different people, still without resolution. Friday’s two amazing discoveries were [a] my health insurance carrier has now provided two, completely contradictory explanations for why they don’t recognize my doctor is in network; and [b] my hospital’s billing department has a “no transfer” policy, which means when you call back to follow up on a complex problem, you have to explain everything from the beginning to whomever answers the phone rather than being able to talk to the person who you were previously working with.

[a] is deeply annoying because it makes the problem very hard to solve when the problem definition keeps changing.

[b] I complained about to the hospital’s patient advocate office. It’s a deeply stupid policy. I was promised a callback from either the patient advocate’s office or from the billing department, neither of which I have yet received. It occurs to me that the way around a “no transfer” policy is to call the office about once a minute until the person I want to talk to happens to pick up the phone, but this plan has its disadvantages in that the people I need to help me will not be kindly disposed to me ringing their phones off the hook. This is incidentally the first time in three decades of calling various customer service departments that I’ve ever run into this policy. Something I informed the patient advocate’s office of in detailed terms. I’m sure it makes sense to some manager somewhere, but from a patient service point of view, this policy is deeply stupid.

This has gone beyond ridiculous. If the next round of phone calls doesn’t produce resolution, I am going to open complaints with both the Oregon Insurance Division, that regulates insurance companies in the state, and the Joint Commission that manages hospital accreditation in Oregon.

Getting political

A number of people have suggested that I should try to reframe my experiences for a political audience, both in terms of attempting to place op-eds in one or more major national newspapers, and in terms of writing to senators and congressional representatives. While healthcare isn’t really my core political hot button, it’s certainly the life I’m living now. And the absurdities of the system are profound in their manifest illogic and cruelty. Put simply, we optimize to prevent fraud and protect profits, and in the process punish patients for being ill. So I’m going to be working on that. If you have experience with healthcare activism, or contacts with major national media and political figures, please contact me with suggestions or experiences that might be helpful.

[travel] Off in Seattle (again)

Yesterday, [info]the_child and I drove to Seattle to visit friends. (Well, I drove. She passenged.) I’d originally thought to put her on the train, but the kiddo wanted a father-daughter trip.

Now mind you, I started driving just last for the first time since last September. Four+ hours on the highway was kind of an overwhelming experience. Especially with the heavy curtains of rain and the ridiculous Friday afternoon I-5 corridor traffic. Made all the more delightful by an electrical gremlin in the Genre car which caused a brief, unscheduled stop at the mechanic, and several hours of low-grade worry afterward.

The gem, though, was that we got to talk a lot. [info]the_child asked me a number of very straightforward questions about my cancer and my treatments, which we discussed at length. We also talked about boys and dating. Beyond that, we talked at some length about technological progress and the concept of changes in the rate of change, that following on a hilarious lunchtime conversation between her, me and Lisa Costello which can boiled down to: “You kids today don’t know good you have it!”. Let’s just say that ENIAC, rotary dial phones and the Engima machine were invoked in the discussion. Plus she shared some of her taste in music with me, via the Genre car’s in-dash iPod connection.

So, yeah, it’s good. Today I’m working on my non-fiction project, and making my heart attack potato salad for people coming over later. Recipe here, if you missed it before: [ jlake.com | LiveJournal ]. Life, it do go on.

[personal] Home again, a good dinner, and miscellaneous updatery

Yesterday Lisa Costello and I drove home from Seattle. This after a very nice brunch with John Pitts, Melissa Shaw and her husband, and Greg Bear and Astrid Bear. We visited with another friend on our way out of town, then hit the road hard and fast for Portland.

[info]the_child was already home from the beach when we got back, so we collected her, made a fast turnaround, and hooked up with Jersey Girl in Portland to admire the new house she and Lisa are sharing, and go to dinner.

We headed for the Good Food Here cart pod on SE Belmont, but on arriving discovered that none of us had thought to bring enough cash. So we wound up at Dick’s Kitchen where elk and buffalo burgers were had by all, along with kielbasa and oven fries with Cambodian garlic sauce. Nobody tried the water buffalo sausage, which I may go back for. (I’ve also had the dork burger there in the past, ground duck and ground pork mixed together, but that’s an occasional special which wasn’t on last night.) Good food and good company for four tired people.

Today I am back at the Day Jobbe where I will spend the next few weeks working on an exceptionally large project. Also, with the new, reduced chemotherapy in play, I am as of now back to being able to drive and have a social calendar. (Hooray!) Somehow the next month’s worth of weekends have rapidly filled up. I’ll even be making a few appearances at conventions and events, including (probably) Norwescon, as well as being Guest of Honor at Gaslight Gathering in San Diego in May.

Also in the department of fun stuff, I will be writing a chapter on steampunk for a forthcoming Writers Digest book on genre fiction. I’ll be doing this after my current novella-in-progress (working title: “Pan, Human”, though I may change it to “Hook Agonistes”) is finished and before I dive back into Original Destiny, Manifest Sin.

So, yeah. Life goes on. Cancer giveth and cancer taketh away.

[cancer] Treading softly on the paths of the dead

“The way is shut. It was made by those who are Dead, and the Dead keep it, until the time comes. The way is shut.”

    —  J.R.R. Tolkien, The Return of the King

Yesterday, before leaving Seattle for Portland, Lisa Costello and I visited with a friend whose cancer is more advanced than mine. They are already in that state which I am approaching of having outrun all the available treatments in the normal clinical path, and are currently depending on drug trials to keep them alive. As it happens, this friend’s family has emotional difficulty in engaging with their treatment and prognosis, so they don’t get to talk about the disease and its discontents in frank and clear terms very often.

We are both dead men walking, this friend and I. Formally classified as incurable. Looking to treatments that might keep us alive another few months or a year or two. Hoping the metastases don’t recur quite so quickly next time. Dreaming of a cure which, while still theoretically possible, is unlikely to the point of vanishingly so.

When two people in this situation know each other well enough to speak freely, the conversation quickly grows brutal. The three of us had met in a coffee shop in a Seattle suburb, and the lady at the next table kept glancing up at us with a horrified expression on her face. I’m honestly not sure how Lisa kept her composure as well as she did.

But there are home truths that occupy your mind and soul when you walk the paths of the dead. And this is a very expensive game of diminishing returns. Cancer is smart, and adaptable. A new drug which works for six months or year then loses its effectiveness. And treatments are horrifically expensive. In my case, we are closing in on a lifetime cost of a million dollars, at adjusted insurance contract rates. January alone was a $100,000 month for me, thanks to surgery and hospitalization. My friend commented that their current drug trial, which is fairly successful for them, requires out of state travel every two to four weeks to the research center, and when the trial ends, they will probably have no access to that drug at any price, as its not yet FDA-approved. That moves things from the category of “expensive” to “impossible”.

So, like Odysseus seeking Ithaca, late stage cancer patients voyage from island to island, risking being turned into pigs or drawn into the sirens’ fatal embrace for the sake of one of more hit, one more high, one more extension on our tenuous and already cancelled lease on life. We are junkies desperate to stay in the light just a little longer before we descend so deeply into the paths of the dead that no pharmaceutical Orpheus will ever be able to sing us back to the lands of the living.

[personal] Going home today

Had a nice dinner last night here in Seattle at the Bellevue location of Maggiano’s.

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Eighteen people in all, so that we overflowed the banquet room had to calve off a small sub-party. More food than twice our number could have eaten, and quite good.

Lisa Costello and I are hanging with the Pitts family this morning, then off to a small brunch, then heading home, so’s I can see [info]the_child by suppertime, and hear all about her weekend at the beach with her mother.

Back in the saddle tomorrow, including the usual Day Jobbery as well as a telephone consultation with an oncological geneticist.


Photo © 2013 Joseph E. Lake, Jr.

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

[cancer] Field notes from Cancerland, off week edition

The genomic sequencing

Yesterday Dad and I had a long teleconference with one of the executives from the consulting service that will be doing the primary analysis of the genomic sequencing data. I plan to make a full post on that later, but for now, Dad and I are still collating our notes on this complex conversation. The net takeaway was that my previously expressed understanding of the goals of the genomic sequencing is essentially correct, but now I have a lot more details about the process, and a better understanding of the expected outcomes.

I also have a little more hope, though this is still a long shot. Basically, the universe of addressable drug targets is a lot wider than I expected it to be, which means there are more opportunities to make this process work well for my personal survival. Plus the gentleman in question was entertaining, informative and pretty cool dude.

It continues to appear that I am one of the very first people to source this particular diagnostic path privately. Up until now, it’s all been academic or corporate research science. So I guess I am on the cutting edge in more than one sense. Thank you again to everyone who made this possible through the Acts of Whimsy fundraiser.

Watch for more information, including both my detailed write-up on the recent call, and a very interesting announcement tying all this to the forthcoming San Antonio Worldcon.

Matters with [info]the_child

My daughter continues to find her own path through this jungle of stress and ambiguous information. She’s able to be pretty direct with me concerning her fears about my disease, but mostly in small doses. I am absolutely honest with her, as her mother and I have always firmly believed that if [info]the_child was old enough to ask a question, she was old enough to hear the answer.

Last night she took our coping process in a new direction, suggesting we start a collaborative work of fiction. She led off, establishing character, setting and problem, and together we wrote about 300 words. We’re both out of town — separately — this weekend, but we’ll work more on this story next week. It’s a neat way to share and bond.

Going to Seattle, ways of saying good-bye

Speaking of going out of town, Lisa Costello and I are off to Seattle today. We’ll be staying with John Pitts and his family, and seeing a number of friends. I’m extremely conscious of the fact that when I resume Vectibix in early March, I’ll be starting down a path that will probably keep me in treatment for the rest of my life. (Unless, of course, the genomic testing pulls a cancer-killing rabbit out of the metaphorical hat.) I’m starting to say good-bye to people and places and things and events. Maybe it’s unnecessary, maybe it’s melodramatic, but that’s where my head is at.

Makes me sad.

The perils of video blogging

I sat down late yesterday afternoon to record a video blog as part of the Lakeside [ [imdb ] project. I managed to both run the camera out of battery power and disrupt the audio pickup in the course of a six-minute long narration about the genomics analysis phone call. It was very frustrating, and caused me no end of grumpiness. Ah, technology.

Hair, hair, everywhere there’s hair

These days, I view both my head hair and my body hair as mutable. They come and go, and change their nature depending on where I am in my treatment cycles. So recently, while shaving, I decided to adopt a chin beard.

Jay Lake with a chin beard

Which I happen to think looks absolutely ridiculous on me. Still, I make fun of this disease every way I can. And in an odd way, it goes with my tri-hawk.

Photo © 2013, Joseph E. Lake, Jr.

Creative Commons License

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

[personal|cancer] Stuff and things, a/k/a the state of the Jay

In no particular order…

I did something I rarely do anymore, which was go out to dinner last night. Early and quick. [info]e_bourne was down from Seattle on a business trip, and that was the one time we had. My house was full of Lisa Costello, [info]the_child and [info]tillyjane (a/k/a my Mom), and it was better for conversation to go elsewhere. I was quite pleased to see her and catch up.

[info]the_child is off to Seattle today with her art history class to see the King Tut exhibit. So last night I emailed her YouTube links for “King Tut” by Steve Martin, as well as a slow bluesman cover of “Dead Egyptian Blues”, since I couldn’t find a good video of either Trout Fishing in America or Bernice Lewis doing it. She’ll be back late tonight, then tomorrow after school she and her mother are headed for the coast for the weekend. So I won’t see much of my kid until next week, after today.

Meanwhile, Lisa Costello has been here for five weeks as of today. She comments briefly here. She’s still looking for a house with Jersey Girl in Portland, but I’ve been enjoying having her around Nuevo Rancho Lake every day, as well as having her around in general.

Yesterday I got 2,400 words in on my METAtropolis 3 novella, “Rock of Ages”, to 11,200 words. I’d originally budgeted 15,000 words, but going by the shape of the plot, I think this will be a bit more than 20,000. At the worst, I’m about halfway done. Unfortunately, I’m racing the chemo clock, because after this afternoon’s writing session, I’ll lose 7-10 days. I get 4-6 days out of every two week cycle when I can write, thanks to chemo brain fog, and even that window is closing. I’m pretty sure I’ll pull this out, but I’m equally sure it’s the last new wordage I’ll write until next May or June. So, a small win in the face of a huge impending setback.

Chemo side effects this round have been more muted than last round, for the most part. GI continues to be cranky, but that’s about like saying water continues to be wet. More to the point, my skin problems from Vectibix and Doxycycline have become more complex but less intense. I’m still absolutely averse to sunlight, which is why I rarely leave the house any more, but the breakouts and pain on my face has been reduced to occasional discomfort on a par with dry, irritated skin. The heavy coverage of acne and rash on my chest and back is less intense but more widespread. I’m also seeing significant dryness and soreness on my elbows, a rash and peeling on the palms of my hands, and scattered acne on my limbs and lower body. Plus this week a pimple inside my mouth. On the other hand, I had three day of Neulasta pain to remind me of my lot in life.

Tomorrow is chemo session four of this third series. My primary caregiver for the weekend, Marta Murvosh, arrives this afternoon, to be picked up at the train station by Lisa. Looking forward to seeing Marta, as I haven’t since last summer. Workie bits today, as social an evening tonight as my energy permits, then we’re off to the infusion center tomorrow. Assuming, as always, that I pass my blood tests today.

Life, she continues unabated.

[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] Doing stuff for the Fourth

It will be a nice day today. We are having a cookout at the home of Team E—, including [info]the_child, [info]lillypond (a/k/a my sister) and [info]mlerules as well as some other folks. Team E— is smoking pork butt and standing ribs, I am making my heart attack potato salad this morning. Running a bit behind on the cooking as I slept a little longer than expected, then took advantage of the holiday morning schedule to take a two-hour walk, including the lovely bit of the hidden urban canyon along the western end of the Springwater Trail.

Spotted on my walk (after I’d left the trail and was headed back to Nuevo Rancho Lake):

IMG_2808

Somebody had a good Tuesday evening. About two dozen somebodies, I think.

Also, recently spotted in Laurelhurst Park:

IMG_2804

Tomorrow and Friday morning, workie bits. Then I’m off to Seattle Friday afternoon with [info]the_child to connect up with [info]bravado111 and his daughter. A nice, social weekend after that, then I’m off to Omaha next week.

Y’all play nice and have a safe and happy Fourth.


Photos © 2012, Joseph E. Lake, Jr.

Creative Commons License

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