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[cancer] Field notes from Cancerland, heading out of town tomorrow edition

Generosity of Spirit

More generosity flows my way. @howardtayler has done some amazing things for me this week, with an able assist from his colorist Travis Walton. Howard teases his work here. Suffice to say this will be public soon, and you can all marvel at Howard’s skill and wit, and understand how impressed and humbled I am by his support.

Airline Mileage

Yesterday’s airline mileage appeal was a bit of a fiasco. I’d not checked into the airline policies for a while, and they have both monetized and restricted mileage transfers between private individual. Thank you so much to everyone who made the effort. Another reader found points.com, which I will be investigating today or tomorrow in hopes of arriving at a more useful solution. In the mean time, the original Big Project has proceeded down another path. I have several other Worthy Projects in mind, so if I can get this straightened out, the appeal will continue, albeit on slightly different terms.

Regorafenib

I’ve been told that my prescription for Regorafenib has been approved. This drug is a specialty pharmacy item, which means it falls outside the usual infrastructure of pharmaceutical benefits. This includes pre-approval letters and me dealing with a designated mail order pharmacy for my medication supply. It also potentially included a whopping co-pay, but it turns out my carrier’s pharmacy plan treated this as simply being at the high end of the formulary. Which is modestly annoying, but that’s same $50 co-pay I have for Celebrex, Levitra, et cetera.

My Next Scan

I have been corresponding with my oncologist about my next CT scan. Those are supposed to be eight weeks apart right now. That’s the minimum spacing recommended for clinical benefit. I also believe there are significant radiation exposure concerns with excessive scanning. In my case, I won’t live long enough to experience that set of problems, but nonetheless the health and safety guidelines exist. The problem is, they want me to have the next CT scan eight weeks after I start taking the Regorafenib. As I am going out of town tomorrow for eleven days — the Nebulas in San Jose, then Rio Hondo in northern New Mexico — I won’t be able to start taking the Regorafenib prior to May 27th at the earliest. And even that date assumes the specialty pharmacy comes through in a timely manner. Which puts me to eleven weeks or longer between CT scans. And creates the situation that we have 3+ weeks of tumor growth prior to the beginning of any hoped-for effects from the Regorafenib. I think we’d have both a growth rate assessment and a clean baseline for evaluation the new medication if we did a scan shortly after May 27th, but that is far too soon per the generic clinical guidelines. No answer yet, but it’s one of the things I’m worrying about.

Tasking All the Things

Remember that big list of mine, of things that need doing before I die? [ jlake.com | LiveJournal ] Well, it’s grown. And we’re doing them. So an enormous amount of administratrivia is happening around Nuevo Rancho Lake. So far, most of the customer service reps, managers and whatnot we’ve dealt with have been very gracious. I feel like Robert DeNiro’s Harry Tuttle in Brazilimdb ] being consumed by paper. Still, progress is being made.

My Coping

I’ve had several people note that I’m pretty cheerful lately. The not very hidden subtext is them wondering why I’m not wailing and rending my garments. Honestly, I’m not sure why I’m not wailing and rending my garments. I suppose because there’s no time for that sort of thing. I don’t have much life left to live, especially in something like normal health, and I have too much to do. Love my child, write my stories, be good to Lisa Costello and Jersey Girl in Portland and mother of the child and my family and my friends and my fans and my co-workers and and and. It is true that my current good nature is a very thin veneer, subject to cracking at even a glancing blow. Beneath that is a bubbling stew of anger, grief and terror, spiced with a catalog of other negative emotions. Nonetheless, here I am. And forward is the only direction for me.

Thank you all for reading, for caring, for reaching out.

[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)

[cancer] Crashing over skin issues

Last night I had an emotional wipeout. Not a full-scale screaming-and-tears meltdown, but mostly only because I was too tired to pitch a fit. I was certainly depressed and upset enough to have done so.

Jersey Girl in Portland had come over to eat dinner with me and Lisa Costello, and trim my hair. The issue with my hair is that the skin disruptions from my Vectibix are particularly annoying on my scalp, where they are intersecting badly with the hair follicles and hair oil. It’s too late to shave me bald — I’d be a bloody mess from that close a trim — but we can take the clippers and buzz me pretty close without too much disruption. Likewise my facial hair, which I can buzz down but not shave skin smooth.

My skin, after all, is no longer smooth.

Put simply, thanks to the drug side effects, I have worse acne now than I ever did even deep in my difficult teen years. Pimples, whiteheads, the occasional blackhead, rashes, dry spots, mysterious little scabs, chapped lips. If you can name a skin condition, I probably have a version of it somewhere on my body now. Pretty much everything except necrotizing fasciitis.

I feel ugly. I feel distinctly unattractive. I feel hideous. I feel marked and marred.

And this was depressing me, deeply.

I’m not normally someone who measures his worth by his looks. (Thank Ghu for that, or I’d have been a basket case years ago.) On my best day, I’m a middle-aged fat guy with a lumpy face. I get by in the world through force of personality and certain combination of native charm and low cunning. It’s hard to feel charismatic, though, when your face looks like the craters of Mercury. There’s not much which can assault my towering self-confidence, but this kind of disfigurement is one of those few things.

So last night, I was very upset and depressed. I’m not especially pleased with myself or the world this morning, either, though the worst has certainly passed. At least for now. As a practical matter, I’m concerned how this mindset will affect my enjoyment of Norwescon starting this afternoon.

Normally I get by in life by simply not caring what other people think and doing pretty much what I want. I always figure if I’m having fun, people around me have the opportunity to have fun with me if it pleases them. Now, though, I feel social awkwardness and personal shame in a way that I haven’t in decades. It’s really messing with my mojo.

Is this because the skin conditions are visible evidence of my illness? Or is this just sheer old fashioned embarrassment? I don’t know. I wish I did, because then I could banish it.

More likely, I know that in general I am wearing thin. The mortality prospects introduced by the January surgery and my shift to the status of incurable are still percolating deeply through my mind and my soul. There is ever less of me emotionally and socially. This skin thing is just an external manifestation of the degradation of so many aspects of my life. So maybe I’m fixating. I don’t know.

I sure hope I get over this soon. It feels like a supreme waste of time, and of mental and emotional energy. But my face is what the world sees of me, and right now that face is a disaster. And this keeps bothering me.

[cancer] Coping skill blues

As mentioned, I am having quite a good time at ICFA. At the same time, I’m having a lot of cancer stress. Wound up retiring a bit early last night and in a very touchy mood, through absolutely no fault of anyone here or elsewhere. Being me, I spent some time analyzing this.

For one thing, dinner last night, while being of excellent food and companionship, was rather a downer in that we spent a lot of time talking about cancer and genomics. That was one of the main points of the outing, to have the talk time, but it’s never a topic that cheers me. At least not the cancer end of it.

Also, I am very much in a “Farewell Tour” mindset right now. This is probably not the healthiest approach I could be taking to things, but it’s the one I’ve got at the moment. The likelihood that I will never get to do [x] again is quite high, for whatever value of [x] you care to name (ie, attend this event, see that person, and so forth), but it doesn’t do me a lot of good to brood thusly. Regardless, that is what I seem to be doing.

Some of the folks in my life at home are getting cranky with me for hithering and yonning so much at the moment. I’m not seeing nearly enough of [info]the_child, Lisa Costello, Jersey Girl in Portland, Team E— [info]mlerules, Deb Stover, and my family members. From their point of view, they’ve been standing by me through thick and thin, and as soon as I feel a little better, I’ve headed for the high country instead of spending time with them.

They have a point. In the last three weeks I’ve been in Houston, Austin, Omaha and Orlando, and I’m going to Seattle next week. Forthcoming trips over the next two months include San Antonio, San Diego, San Jose and Omaha again. Plus several rounds of visits from out of town friends.

From my perspective, these trips are a collision of three different planning calendars (Day Jobbe, cancer care and writing events) with pent up demand on my part and others. If I don’t make these trips now, I probably never will. See my “Farewell Tour” comment above. I’ll be home soon enough, and grounded pretty much for the rest of my foreshortened life.

But that doesn’t mean I’m not neglecting the people who love me.

Just one more damned thing to be pissy about. One more thing by which to be pulled in too many directions at once. One more twenty-pound pile of sand I’m trying to cram into an eight-pound bag.

It’s hard to know when to serve my needs and when to serve the needs of my friends and family. It’s hard to know what my needs are when they’re in conflict. It’s hard to know what to say when others grow unhappy with me, except to keep my own mouth shut when I’m feeling touchy because I don’t want to say things I’ll regret.

If I only had more time, all of this could be more spread out and I could pay proper attention everywhere. Ultimately, that is what cancer steals from me: time. Time to travel, time to live my writer life, time to love, time to pay attention.

Time.

[personal] Home, and an eventful, friend-filled weekend

I got home from Omaha last night, to be met at the airport by the delightful Lisa Costello. Gabrielle Harbowy and Fanny Darling arrived at almost the same time for a weekend visit, we did the lunch thing, then spent the afternoon at Nuevo Rancho Lake. There we were joined by [info]tillyjane (a/k/a my mom), the Niece and [info]the_child.

This morning, [info]the_child goes off for a weekend of lacrosse, while the rest of us head for Pine State Biscuits, along with Dad, for breakfast. The tribe is having a dinner this afternoon at the home of Lisa and Jersey Girl in Portland with Gabrielle, Fanny, [info]mlerules, and Team E—. We invited Debra Stover as well, but she could not make it. After that, most or all of us are off to a rocking St. Patrick’s Day party for the evening.

Also, today I plan to put the final edits on the submission draft of the nonfiction chapter on steampunk. Maybe some other revision tomorrow, maybe a day off, but I need to get on to assembling my slideware for the forthcoming Nerd Nite talk on genomics and cancer [ jlake.com | LiveJournal ].

For those playing along with the home game version of “Where’s Jay”, I’m off to Orlando, FL on Wednesday to attend ICFA. Yes, Mr. Don’t-Go-Out-In-the-Sun is going to Florida for five days.

[events] The Kalimpura reading

Yesterday’s dinner and reading was a lot of fun. We had a good turnout for the pre-reading meal, about 15 people. Here’s the table full of us, on the McMenamin’s patio:

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Going clockwise from the lower left, I think I can capture all these names. [info]mlerules, Debra Stover, Janet Happe Lunde, Brian Hunt, Rachel Sinclair Hunt, the Niece, [info]tillyjane (a/k/a my mom), [info]martianmooncrab, Michelle Carlson, Jenna Miller, Stacey Hale Hankins, Jersey Girl in Portland, me, Lisa Costello. [info]delerium3 is taking the picture, and MtnSk8tr is out of the frame.

Also, [info]martianmooncrab gave me this fetching hat:

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Which I wore through dinner and partway through the reading.

We had a pretty good turnout at Powell’s. Peter Honingstock did his usual wonderful job of hosting. I tried to shoot some footage for Donnie Reynolds, which resulted in moderate hilarity around adjusting the field expedient camera stand. I spoke briefly about some of the things going on in my writing and personal life, read the very beginning of Kalimpura, then the calming-the-storm scene from the book’s second section, took some Q&A, and a signed a bunch of titles. All in all, it was quite a good evening.

My thanks to everyone who turned up at dinner, and all the more so to everyone who made it to the reading.


Photo © 2013, Joseph E. Lake, Jr. and E. West.

Creative Commons License

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

[links] Link salad’s back and you’re gonna be sorry

“The Stars Do Not Lie” — My Nebula-nominated novella is now online at the Asimov’s Web site.

Fantasy Fans: Where’s Your Outrage? — N.K. Jemisin on the Oscars and Quvenzhané Wallis.

Fifty Shades of BrainsSex. Zombies. Really annoying present tense narration. (Via a friend who almost certainly wishes to remain anonymous.)

Cataloging the Borg Complex — A rhetorical device. (Snurched from Daily Idioms, Annotated.)

Lisa fears zombiesWhat happens when good housemates go bad… Heh.

Multigene cancer tests giving doctors new hope — Not to mention patients. (Thanks to David S.)

For Sale: Famed Nobel Medal for Discovery of DNA Structure

Finding Portland — A very nice video montage of Portland. (Via Lisa Costello.)

The Town that spent 25 Years Underwater — (Snurched from .)

WowEvidence exists that a large natural nuclear reactor formed and operated on Mars in the northern Mare Acidalium region of Mars. However, unlike its terrestrial analogs this natural nuclear reactor was apparently much larger, bred 233U off of thorium, and apparently underwent explosive disassembly, ejecting large amounts of radioactive material over Mars’ surface.

Earthquakes’ booms big enough to be detected from orbitSatellites listened to the 2011 Japan quake and located fault beneath Spokane.

Why I’m quitting Facebook — Hmmm.

Why Won’t Yahoo! Let Employees Work From Home?“What’s really troubling about this is that a technology company can’t figure out how to collaborate remotely,” says Kate Lister, president of the Telework Research Center.

Small rise in global temperatures could thaw permafrostStalagmites and stalactites reveal a 500,000-year history of Siberian permafrost Amazing, how liberals have managed to get half a million years of geology to support their climate change hoax.

“The Myth of Persecution”: Early Christians weren’t persecuted — (Thanks to Bellatrix.)

A Short Political Comment, In Re the US 2nd Amendment — Yes. This, too.

Comedian Beppe Grillo turns blog into Italy’s third-largest political movement — Huh. We need more of this kind of principled activism, methinks.

4 Bogus Right-Wing Theories About Poverty, and the Real Reason Americans Can’t Make Ends Meet

I won’t be Rushed — A conservative defends her criticisms of Rush Limbaugh. For one, part of the point I was trying to make was that the impulse to defend anything and everything that a party heavyweight says — to the death — has the deleterious effect of making conservatives seem irrational and herd-like.

If spending is cut, GOP will get the blame — Well, duh. The Republicans are the ones who keep gaming the budget and spending process, all while never producing an actual, detailed alternative budget. The amazing thing is that Your Liberal Media has for once done enough reporting for the accountability to be clear to the public.

Deluded Republican ReformersConservative pundits’ ideas about fixing the GOP are totally meaningless, says Michael Tomasky, until they deal with the problem of their party’s rage-driven fanaticism. (Via [info]threeoutside.)

QotD?: Hey la, who’s back again?


2/26/2013
Writing time yesterday: 1.0 hours (Research and correspondence for the current non-fiction project.)
Hours slept: 7.25 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 235.8
Number of FEMA troops on my block converting golf course to concentration campsi: 0
Currently reading: Wyrd Sisters by Terry Pratchett

[links] Link salad wipes the sand from its eyes

Ballard Street on writers and their inspiration — Hahah.

Giant Squid, Anyone?Scrivener’s Error with a number of interesting observations on publishing.

Bacon ExplosionJersey Girl in Portland on our recent culinary adventures. Mmm.

Freakishly large goldfish found in Lake Tahoe; Researchers worry about impact on native species

1964 ‘Popemobile’ visits Tacoma museum

Roko’s basilisk — Okay… (Snurched from Daily Idioms, Annotated.)

Pistorius case brings South Africa gun culture to global spotlight — Sigh.

Old Yellow Stain: A Tragedy In One Act — Jim Wright on the decline of Senator John McCain.

QotD?: Sleep much?


2/24/2013
Writing time yesterday: 1.0 hours (Research for the current non-fiction project.)
Hours slept: 8.0 hours (solid)
Body movement: 0.0 hours (cold and wet, not walking with my mild head cold)
Weight: n/a (out of town)
Number of FEMA troops on my block covering up high crimes and misdemeanors in Benghazi: 0
Currently reading: Mort by Terry Pratchett

[cancer] Field notes from Cancerland, Friday edition

Meeting with my primary care provider

I was recently exchanging emails with my primary care provider. I’d asked them if I should come in for my more-or-less annual cholesterol screening now, while I’m in the relatively healthy trough between chemo series. They replied that it wasn’t worth doing, as monitoring my cholesterol levels would neither improve my quality of life nor extend it.

I really had to think about that one. Just another affirmation that while I have not yet been given a terminal diagnosis, I am on a terminal path. We’re no longer worrying about my long-term heart health.

My primary care provider also suggested I come see them to talk about palliative care and hospice. Their point was while I certainly didn’t need that now, it would be better to understand my options and plan ahead than try to deal with this in the moment of maximum stress. As this has been my general view of forward planning for late life, end-of-life and post-mortem issues, I agreed. We’re meeting near the end of the month.

That will be a sobering consultation.

This is my reality now, planning for the manner of my death. Not the overwhelming reality, or even a majority of it, but still a hard nugget at the center of my world.

The genomic sequencing

The genomic sequencing has been done, and we’re now wrangling with the lab about how many copies of the data to release. They are grudgingly agreeing to produce a second copy, at my cost, and are flatly refusing to produce more. Which seems sort of strange, and extremely patient-unfriendly. The issue from my perspective is that the data comes encrypted on a high-capacity hard drive. It’s not clear to me that I’ll be able to make copies myself, depending on the nature and degree of the encryption.

I may be putting out a call for some help from a white hat hacker soon, on this one. Ideally someone in the Portland area, so I don’t have to keep mailing this thing around, once I have received it.

At any rate, the data now exists. Our next step is to get it off to the analysis group.

Coping

I continue to cope in various ways. (See below.) Mostly I’m keeping it together pretty well. This has surprised my therapist, considerably I think. If my family and friends are likewise surprised, they have kept it to themselves. But who has time to melt down, or slip into a black depression? Either of which would be reasonable responses to the unreasonable stresses in my life. But life is too short. Figuratively and literally.

Archives

Sunday we are having an archive party at my house. We will be boxing up and prepping for shipment everything that needs to be sent to Lynne Thomas the Northern Illinois University Special Collections. There will also be cookery, as Jersey Girl in Portland has threatened a bacon explosion. Meanwhile, Lisa Costello and I stumbled upon Benesse whilst out and about yesterday, and came home with several high end flavored olive oils to go with the bread and cheese I will be providing that day. So a small, artery-clogging feast will accompany our labors on the part of literary posterity.

Tattoos

Speaking of coping, I got three new tattoos yesterday. The work was done by Spike Palmer at Sea Tramp Tattoo in SE Portland.

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Me and Spike, setting up

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The man at work

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The results

That’s one new zodiacal cancer symbol, to commemorate the fifth surgery I just had, and two outlined biohazard symbols, one to commemorate the chemo series we just broke off halfway finished, and one to commemorate the reduced chemo series I will be embarking on in March.

We’re also discussing the possibility of a modest tattoo on my upper left chest marking my status as a permanent cancer patient. I didn’t want to deal with it all at once, though. Ah, pain. (Though to be honest, I would describe tattooing as extreme discomfort rather than actual pain.)

Making a spectacle of my death

My dear friend John Pitts recently described me as making a spectacle of my death. I was mildly offended by this at first, but then I realized he meant this in a literal sense, almost a Roman sense, rather than in the contemporary pejorative use of that phrase. And he’s right. I’ve been public about this cancer since the second day, even before we knew it was cancer. Five years later, I have lived out this disease and its discontents in a very public forum. I can do no less with the process of my death and dying.

I do it because it helps. It helps me cope, to spell things out clearly, to try to wipe away the fears and assumptions in cold, objective words. It helps others, demonstrably so from the mail I receive on a far too regular basis. It demystifies the processes of cancer just a little more, for those who come across my blogging. And I have to believe I’m making the world a little bit better place for this.

As I said to John, one of my great gifts is story telling. If I can’t tell the story of this cancer, who can? It’s perhaps even the case that my entire fiction career was little more than preparation for my career as a cancer patient and cancer blogger.

I can’t say for sure about any of that. What I can say is that I embrace John’s comment. Yes, this is spectacle. Whether you are amused, edified or horrified, if you are reading this, you are participating. I’ve stripped away the confining veils of privacy and common decency in favor of as much honesty as I can muster. And so many of you have paid me back in kind, as well as paying it forward.

Thank you for coming along this far. I hope you can follow the rest of the journey without too much heartbreak, and I hope this story makes everyone’s process a little easier when they or their loved ones approach this dark door I am on the step of.


Photos © 2013, Lisa Costello

Creative Commons License

This work by Lisa Costello is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

[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.