Jay Lake (jaylake) wrote,
Jay Lake
jaylake

[cancer] Field notes from Cancerland, Thanksgiving week edition

Mutation Status

My test for the P13K mutation was negative, so I do not qualify for the phase one clinical trail available at my local hospital. We are also continuing to run into minor issues regarding my KRAS mutation status. As long time readers may recall, while I do have a KRAS mutation, it's not one of the common ones, occurring in less than one percent of cases. So treatments and studies which call for a KRAS wild type patient don't fit for me, as I am KRAS mutated. Treatments and studies which call for a KRAS mutated patient don't fit for me, because I don't carry one of the common, well-studied variants. Neither one nor t'other.

Phase One Clinical Trials

We continue to search for phase one clinical trials for which I do meet the qualifications. My science advisory team is using clinicaltrials.gov, as well as medical literature searches and other resources. Dad and I will be sitting down later this week with [info]mikigarrison (who in her other life is a medical researcher and medical school professor) to review the outcome of those searches. Plus I have a call today with the National Cancer Institute to discuss study qualifications and intake.

There are a lot of nuances to this. All our study options are extreme long shots. And logistics has a significant impact. For example, how far I'm willing to travel for a study is in part a function of how long I have to be there. I don't see much point in spending what's left of my foreshortened life away from [info]the_child and Lisa Costello and my family. Likewise, treatment modalities. Chemotherapy has never had much effect on my cancer, so I'm personally biased towards studies that take some other approach, just for the opportunity to try an entirely different treatment course. And so on, and so on.

It's complicated. So very, very complicated.

Funeral Planning

I spent part of yesterday going over funeral planning with Dad and [info]kenscholes. Dad and I then went to a funeral home to talk about specific options and requirements, and look at the memorial garden and the (vast) mausoleum. Which if I were not the principal would all have been quite fascinating.

We now know we have up to eight hours to have my body removed from my place of death by the funeral home. Given that I do not wish to be embalmed, cremation has to take place within seventy-two hours. The cremation chamber has a witnessing room so the survivors can watch my body be placed into the retort. Burning takes two to three hours. We've had extensive discussion about disposition of ashes, and where to place a marker. Current discussions include whether the marker will be a stone or a bench, but in either case it will be in the memorial garden.

The question of funeral/memorial services got complex. I think there will be three. One very small and private at the time of death and cremation, one slightly larger for family and close friends just after cremation in the memorial garden, and a much larger public memorial later on for my wider range of friends, fans and colleagues, probably at a West Coast convention.

Like everything else about my dying process, all this takes time, money and trouble. Better to be thinking about it now, and setting the basic decisions in place, than to force my loved ones to rapidly piecemeal something together later on.

Tags: cancer, child, death, family, friends, health, healthcare, personal, radiantlisa
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