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Jay Lake
Date: 2013-10-10 06:39
Subject: [cancer] Field notes from Cancerland, government shutdown edition
Security: Public
Tags:cancer, death, friends, health, personal, radiantlisa
Halfway Through the Two-Month Box

I have lab work tomorrow, and my monthly appointment with my oncologist on Monday. That marks me halfway through the two-month box. This is the easy one. The doctor is just checking on my continuing experience of the Regorafenib. It's a very difficult drug. Me, still having trouble standing, walking, eating, sleeping and thinking, plus the usual lower GI disruption. In other words, same as it ever was. I am seeing a downward drift in my weight, which is correlated to a reduction in appetite. We'd like to get to the bottom of that, but it's nowhere near dangerous yet.

Speaking of GI

I had a pretty violently bad evening yesterday. Wound up having to take both sets of GI pills so I could get some sleep. I was still woken up twice by urgent cramps. Meanwhile, Lisa Costello was feeling unwell. This meant we had to cancel our evening plans with the delightful Ellen Eades, who is visiting. This morning, the general information coming from my GI is that when the pills wear off, I'm right back in the soup.

School Visit

I'm doing a school visit today to discuss my recent essay on kindness and opportunity [ jlake.com | LiveJournal ], which was used in the class as a teaching tool. I'll write more about this once I'm sure I have permission to reveal details.

Disability, Life and Health Insurance

It's been a bit of an exciting week with various setbacks. For several days my health insurance was in cancellation status due to the transition from being part of the employer group to being in a COBRA extension. This while my $9,700 monthly prescription for Regorafenib needed to be refilled. My disability insurance is linked to some of my life insurance coverage, and I also received an odd letter about that. All will be well, but it's pretty stressful to navigate this kind of stuff.

Estate Planning and Finances

Also an exciting month because I'm in the transition between Short Term Disability and Long Term Disability, which means about five weeks with no income at all. Makes paying the bills fun. (Yes, I have plenty of money in savings, this is not a plea for help, just an observation about stress.) The estate planning continues, but every time I think we have ourselves sorted out, something new comes up and it drags on a little further. Eventually I will be done breaking my brain on this.

The One-Hour Rule

Based on several recent experiences, I have now instituted a one-hour rule. I can only spend one hour per day in focused discussions or meetings on complex issues such as finances, insurance, disability, estate planning, etc. It takes about that long for me to check out of the conversation and become increasingly confused. If I push very far past that hour, I spend the rest of the day fatigued, irritable and distressed. This is part of why I am on disability now: I'm simply not capable of the kind of focused, quality cognition that marked my entire career in both the Day Jobbe and as an author. Hates it we does, precious. Hates it we does.

The Tough Stuff

We're putting a competency evaluation plan into place. Basically, at what point do I turn over my debit card and car keys to someone else, and let the existing powers of attorney come into play? Because almost by definition I likely won't recognize my own point of incompetence, we're going to draft an agreement that a group of the people closest to me have to unanimously agree that I need to surrender my decision making powers before this happens. I have also enlisted my therapist in this process. The point of the written agreement is that the me of today can hopefully convince a potentially querulous and in denial future me of what needs to be done.

Likewise, we are in discussions of how and where to place a permanent memorial to me. As I'm planning to donate my cadaver to the medical school at the hospital where I receive treatment, there won't be a gravesite. No conclusions yet, but I can tell you, it's a jolly topic of discussion.

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Debbie N.
User: wild_irises
Date: 2013-10-10 14:38 (UTC)
Subject: (no subject)
I continue to deeply appreciate the depth of detail you give us in these updates, and to be much sorrier that you have this detail to give.
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crows o'clock
User: sheistheweather
Date: 2013-10-10 15:24 (UTC)
Subject: (no subject)
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desperance: luke
User: desperance
Date: 2013-10-10 17:49 (UTC)
Subject: (no subject)
As I'm planning to donate my cadaver to the medical school at the hospital where I receive treatment, there won't be a gravesite.

A friend of mine died and gave his body to medical science. A few years later, his son was somewhat surprised by a phone call from the teaching hospital, saying in essence, "Okay, we're done with your father's body now, where should we deliver it...?"
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User: Barbara Smoody
Date: 2013-10-11 00:51 (UTC)
Subject: lilies
I was going about my campus errands at OHSU in late spring 2012, and was overcome with a cloud of lily fragrance. Followed my nose down the hall to the Auditorium, where the annual ceremony to honor the med student's anatomy lab cadavers was in progress. I love lilies, and now, even more. Evocation in its most literal sense.
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User: a_cubed
Date: 2013-10-11 09:53 (UTC)
Subject: (no subject)
Yep, this. Most places give the body back afterwards at some point (though not necessarily every last scrap).
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Gary Emenitove
User: garyomaha
Date: 2013-10-11 13:48 (UTC)
Subject: (no subject)
I was just getting ready to message you that, eventually, they will return the body to the family. Another dear friend's mother did the same thing some time ago and this year they're having the burial. So, there's another detail to deal with.
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jtdiii: Bio
User: jtdiii
Date: 2013-10-10 22:06 (UTC)
Subject: (no subject)
Even if you give your body to science, you need to cremate at least a piece of you, so that one of your fans can sprinkle part of your ashes over some rocket going into orbit.

At least some of you would get to space. :)
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User: Barbara Smoody
Date: 2013-10-11 00:46 (UTC)
Subject: disposition of cremains
a friend's father put "Surprise Me" in the blank for "disposition of cremains" so everyone who wanted to was invited to take a film canister of SK away from the memorial service, and distribute him in surprising places. We took him to Dog Mountain in the Columbia River Gorge. I think outer space is a pretty cool destination, too.
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Jay Lake
User: jaylake
Date: 2013-10-14 16:48 (UTC)
Subject: Re: disposition of cremains
Can I get shot into space? :D
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User: Barbara Smoody
Date: 2013-10-11 00:53 (UTC)
Subject: (no subject)
i will keep the tour short and sweet, with lots of cool images...
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User: joycemocha
Date: 2013-10-11 03:01 (UTC)
Subject: (no subject)
You did quite well today with the kids. As long as no names and faces are disclosed, sharing's okay. And it's sinking in--some of the quietest ones there were thinking very hard. I had a conversation with one of the lively young ones after school--there was a thank you to you, and some middle school level thoughtful responses. Not bad considering the volleyball game was about to begin--but that's when that one gets most focused.
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User: a_cubed
Date: 2013-10-11 09:57 (UTC)
Subject: (no subject)
Have you thought about making a video as well as a written note to your future no-longer-competent self? It's all very well reading what you wrote, but a video of past you would be more compelling to future you, I think.
$FATHER died fairly quickly after a short illness. During an illnes about a decade earlier he was slightly delerious from the effects of the illness and the drugs for the treatment. I had to humour him to keep him calm. I wondered about making a video myself telling me to trust $WIFE (and later one telling me to trust $DAUGHTER) if they tell me I'm delerious or otherwise not properly competent.
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