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Jay Lake
Date: 2013-04-26 05:39
Subject: [cancer] Field notes from Cancerland, (almost) anniversary edition
Security: Public
Tags:cancer, child, health, personal, radiantlisa
Anniversaries and Getaways

This Sunday, April 28th, is the fifth anniversary of my initial presentation with primary colon cancer. That's five years I've been living with Stage IV cancer. As it happens, Lisa Costello and I are going away this weekend to spend some time alone together. Given the schedule over the next two weeks and the likely outcomes of my forthcoming oncology consult on May 8th, this is almost certainly the last time we will ever be able to do so with me in any sort of health. (Even that is a relative statement.) I am having a cancerversary party with family and close friends, but not until mid-May, simply due to scheduling issues. So, for whatever it's worth, the day that changed my life forever is about to marked again.

Listening to the Children of the Night

Last night, Mother of the Child, Lisa, and I went to the annual spring concert of [info]the_child's school. She is a Waldorf kid, so the array of musical talent on display is pretty amazing. It was nice to be out in the evening, even if my foot was absolutely killing me. Plus I had some pretty wrenching emotional reactions to being among all those kids. A weird intersection of mortality, pain and self-reflection, most of it fairly serious off-kilter. I left the concert with the feeling that I had wasted my life. This is a laughable assertion, both objectively and subjectively, but still. I'm glad I went, and it was great to hear her sing, but the emotional terrain was peculiar. To say the least.

My Foot

Speaking of pain, my foot continues pretty unhappy. It's been over a week, and I am improving noticeably, but I am also still walking with a cane. I'm at that stage of recovery where things can feel okay long enough for me to forget what I'm about and do something stupid. Also, I've noticed the vibe out in public when you're moving slowly and with a cane is very different. Plus it's hard to pull off a flirty smile when your face is covered against the sun and you're leaning on a cane. You become socially invisible in some very specific ways.

Virtual Jay

The inestimable [info]jackwilliambell has taken the first steps on the Virtual Jay project discussed yesterday. He has set up a project in GitHub, with the intention of transitioning it to a group project if there's sufficient interest and activity. Drop in and contribute, if you're so inclined.

Open Sourcing my Genome

The biggest challenge appears to be finding a robust and persistent host for the master copy of my genomic sequencing. This requires about 500MB of long term storage (or about 1GB if I also publish my tumor genome), along with the bandwidth to support access. I don't think jlake.com is up to the task, and it's not clear to me in any case how long the account will be maintained after my death. Any thoughts?

CPT Coding for Whole Genome Sequencing

Thank you for all the discussion and ideas yesterday, both in the blog comments sections and via direct message and email to me. The consensus appears to be that no one is certain whether there is a CPT code for a whole genome sequencing — lots of answers for partial and for other specific aspects. The best solution appears to be find a lab that does it, bills it to insurance and is willing to talk to either me or my father. Can anyone suggest someone to talk to?

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User: oldcharliebrown
Date: 2013-04-26 14:06 (UTC)
Subject: (no subject)
Approach someone at archive.org to host it? Or wikipedia?
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User: ericjamesstone
Date: 2013-04-26 15:07 (UTC)
Subject: (no subject)
1. Make a torrent of your genome. Ask your blog readers to download the torrent and seed it. I'm sure many of your friends would be glad to have the Complete Jay Lake on their hard drives, and would be willing to spare a bit of bandwidth to share you with the world.

2. Create a small trust fund ($2500 would probably provide sufficient perpetual income for domain & hosting fees, but $5000 would be safer) to take control of your website after your death, including hosting your genome.
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User: klwilliams
Date: 2013-04-26 18:10 (UTC)
Subject: (no subject)
I've found that using a cane makes me a whole lot more visible, though not overtly so. People pause to hold doors for me longer, they move out of my way, and they get up to give me a seat. I try to consciously smile, since I've noticed a lot of people with canes frown (for good reason, I suspect, since they're probably in a lot of pain), but I need to rely on the kindness of strangers so I want to appear hospitable. Being female helps an awful lot, though, and dressing nicely for work helps, too (I work in the Financial District). I'm glad you have friends to be with you.
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User: fledgist
Date: 2013-04-27 13:52 (UTC)
Subject: (no subject)
I've noticed that myself.
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