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[Cancer]

[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.

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