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[photos|funny] Door sign at Norwescon

Sign at Norwescon

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.

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[conventions] In which I have a reading this afternoon at Norwescon

I accidentally seem to have acquired a reading here at Norwescon, despite not being on programming. I’ll be reading a new urban fantasy short, “King of the Kingless”, at 5 pm today in Cascade 1.

Generally having a grand old time, but I have almost overslept a breakfast date, so you’ll have to find out about it later. Hopefully see some, all or none of you at my reading this afternoon.

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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.

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[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.

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[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.

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[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.

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[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.

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[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.

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[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.

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.

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[travel] Away from home (for the first time in months)

Lisa Costello and I are in Seattle, staying with J.A. Pitts and his family. It’s my first trip away from home in months, and a chance to visit friends I don’t often see. I’m not appearing at or hosting any public events this weekend, just hanging out.

It’s kind of cool, being briefly normal.

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