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[cancer] Field notes from Cancerland, weekend addendum - Lakeshore
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Jay Lake
Date: 2013-05-11 05:34
Subject: [cancer] Field notes from Cancerland, weekend addendum
Security: Public
Tags:cancer, family, friends, health, personal, process, radiantlisa, writing
Forward Planning Redux

The crew for this morning's disability planning meeting has grown. Six of us are meeting for breakfast to go over a number of financial and care issues. I'm not pulling the trigger right now, but I am trying to get all my ducks in a row so that when the time comes, we just push a few buttons (so to speak) and launch the process. The crew is Lisa Costello (my primary caregiver) my dad (who as a retired senior Federal official has been handling a lot of my paperwork for a while), [info]lillypond (a/k/a my sister, who is also my executor), and Team E— (both of whom have extensive experience in social services, disability issues and end-of-life care). I am very lucky to have these people around me.

Happy Cancerversary

The somewhat postponed cancerversary party for family and close friends is tonight. It has acquired a deeply ironic spin, given that when I scheduled it we knew nothing of the new diagnosis. Still, we will be celebrating five years of survival. Regardless of what comes next, what we've already accomplished is amazing.

Back on the Horse

As of yesterday, I'd bounced back far enough from my 'splat' to both do some writing (well, editing, but that counts) and clear some more of the backlog of ongoing paperwork in the house. So that's good, yes?

Seeing the Doctor (again)

Yesterday morning, Lisa Costello, Dad and I met with my primary care physician. We reviewed the likely course of liver failure, discussed late life and end-of-life treatment options and care decisions, and they referred me to a palliative care specialist for further preparatory discussions. We didn't really learn anything major and new, but we confirmed much of what we'd thought and put a better framework on it.

Seeing the Oncology Nutritionist

We also met with the oncology nutritionist to discuss how best to eat during liver failure. Much of it is common sense, though the two elements that were new to me were a strong recommendation to multiple small meals, which I have certainly heard in other contexts; and a recommendation to rebalance to less protein and more carbohydrates. They also recommended cheese. Mmm, cheese.

My Mental and Emotional State

I continue to process all this in dribs and drabs. I don't suppose I'll ever finish that effort, I'll just die somewhere along the way. As I've said before, no matter how much you expect something like this, it is still a shock when it comes. And there is so much to do. All that "to do" is good for me, it gives me a focus and some purpose. But I can't help seeing that not only is there no light at the end of the tunnel, the tunnel simply ends not too far ahead of me.

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devi: me+clio
User: deviantgrrrl
Date: 2013-05-11 18:34 (UTC)
Subject: Thank you, Jay.
Thank you for your eloquence and your honesty. Thank you for shining a light on a subject that so many are terrified to view. Thank you for giving us a roadmap of some of the things that we all need to think about before we die, and for reminding us of the fact that it will happen to all of us at some time. The information that you're sharing will make this life, and preparing for the end of life, so much easier on so many of us and those we'll leave behind.

I am immensely grateful for having had the great pleasure to meet you and hear a bunch of your stories directly, and am thankful that you've touched my life.

Edited at 2013-05-11 06:34 pm (UTC)
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