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Lakeshore - [cancer] Field notes from Cancerland, followup exam edition
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Jay Lake
Date: 2013-02-06 04:59
Subject: [cancer] Field notes from Cancerland, followup exam edition
Security: Public
Tags:book of the dead, books, california, cancer, child, conventions, family, health, original destiny, personal, stories, writing
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.

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scarlettina: Book love
User: scarlettina
Date: 2013-02-06 14:45 (UTC)
Subject: (no subject)
Keyword:Book love
It's probably not news that my admiration for your fortitude through all this is enormous. I so want for you all the things you want and hope for. I'm so glad that you're writing. And I want to read only Original Destiny, Manifest Sin; the Book of the Dead can wait, as far as I'm concerned, indefinitely.
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joycemocha
User: joycemocha
Date: 2013-02-06 15:00 (UTC)
Subject: (no subject)
We had just begun to touch on the complexity of paperwork for our dying friend when she died. And that was without insurance, seeking to get her on some sort of insurance.
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Keikaimalu
User: keikaimalu
Date: 2013-02-06 16:16 (UTC)
Subject: (no subject)
If I may ask a crazy question, and one that you've surely contemplated already: Are you sure the chemo is helping? I get wanting to live as long as possible. But if the tumors are immune to or even bolstered somehow by chemo....?

Very personal question, I know. I debated not posting it. But you are so open about your experience, I figured it might not be unwelcome. If it is, please forgive me and pretend I never asked.
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Jay Lake: cancer-skull_tattoo
User: jaylake
Date: 2013-02-06 16:56 (UTC)
Subject: (no subject)
Keyword:cancer-skull_tattoo
Actually, that's one reason I'm not going back on FOLFOX next month as originally planned.
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a_cubed
User: a_cubed
Date: 2013-02-08 01:50 (UTC)
Subject: Jay Lake's Book of the Dead
I am somewhat involved in the community of researchers who look at digital identity and digital assets after death. If you could use any help on "Jay Lake's Book of the Dead" (or the surrounding issues) regarding your digital footprint, please do let me know. I'd be happy to help and/or point you to people more deeply involved in that area.
Meanwhile, I continue to be amazed by your fortitude and openness on this. Kudos, hugs.
Oh, and fuck cancer, too!
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Jay Lake
User: jaylake
Date: 2013-02-08 04:16 (UTC)
Subject: Re: Jay Lake's Book of the Dead
You should talk to my archivist, Lynne Thomas at NIU.
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