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[cancer] Field notes from Cancerland, Thanksgiving week edition - Lakeshore — LiveJournal
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Jay Lake
Date: 2013-11-26 06:51
Subject: [cancer] Field notes from Cancerland, Thanksgiving week edition
Security: Public
Tags:cancer, child, death, family, friends, health, healthcare, personal, radiantlisa
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.

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User: chris_gerrib
Date: 2013-11-26 15:49 (UTC)
Subject: (no subject)
I'm sure there's something more depressing than planning one's own funeral, but damned if I can think of it.
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User: deborahjross
Date: 2013-11-26 16:42 (UTC)
Subject: (no subject)
Keyword:blue hills
When my friend died, her husband wanted a witnessed cremation, for which there was a small additional fee. We spent some time with her in the mortuary, her in an open cardboard box (yes, she was wearing her red tango heels and had the name plaques for her two favorite horses), until the family was ready. Then we got a tour of the crematory itself, which made it less foreign.

But the most moving, and healing moment, came when she was all loaded up, the door was locked, and the family together pressed the start button. So it wasn't a distant, passive goodbye but an active one, and one that brought a great deal of closure.
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User: ex_catherin85
Date: 2013-11-26 17:15 (UTC)
Subject: (no subject)
I hope that there's good news on the clinical trial soon. In the meantime, I have tremendous admiration for your planning skills and how you're handling this.
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User: martianmooncrab
Date: 2013-11-26 18:33 (UTC)
Subject: (no subject)
Good fortune for finding a clinical trial (and the many meanings of that word fit). You are such an anomaly that you would think someone would like to have a go at your cancer.

Planning is good. I would say a bench would be a good choice, then folks could still be sitting on your lap as it were.

When its my time, I am going to the VA Cemetery, they have lovely settings, and I will be close to my Dad.
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A wandering fellow on the long road
User: tsarina
Date: 2013-11-26 19:59 (UTC)
Subject: (no subject)
I've erased and rewritten this comment five times already. I just want to tell you that it speaks so well of your character and your love for your people to get the memorial/death/body arrangements settled. My father died unexpectedly a few months ago and trying to make these decisions while everyone else ran around like headless chickens was horrible beyond my imagining.
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User: cathshaffer
Date: 2013-11-27 14:16 (UTC)
Subject: (no subject)
Just want to say that planning a funeral can give needed structure and purpose to an otherwise catastrophic time. I think advance planning is good, but don't worry too much about getting every detail right. There may be quite a few decisions that it will be more appropriate for your loved ones to make when the time comes. *hugs*

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