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
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.
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?