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Jay Lake
Date: 2013-07-02 06:35
Subject: [cancer] Field notes from Cancerland, gentleman of leisure edition
Security: Public
Tags:books, cancer, cars, child, disability, friends, health, personal, radiantlisa, work

As discussed yesterday, today is my first day out of work. I'll be out of work for the rest of my life. This continues to feel very strange to me. I woke up this morning melancholy and feeling off. I have no schedule anymore. (Well, I do today on account of an early therapy appointment, but the principle holds.) I still have the things I need to do — exercise, blog, so forth — and the things I want to do — write, read, hang with Lisa Costello anc [info]the_child and my friends and family. I just need to adapt to the now much more fluid structure.

At a minimum, this means my morning blog posts don't have to be finished before 6 am Pacific, which is the time of day at which I have started work for lo these many years.


[info]mlerules and Team E— came over yesterday afternoon for another basement cleaning party. We have perhaps one more to come. Vast quantities of archive material were boxed for [info]rarelylynne. The library has been rough-sorted for giveaway, send-to-Powells, keep-for-Child, and Jay-cannot-get-rid-of. We have maybe one more round of serious basement cleaning to do before it's mostly settled.

Another part of my life boxed and put away forever.

More on Books

As mentioned, the books have been divided into several parts. Like most authors and fans, I have been obsessed with books all my life. At my high point, I probably had 5-6,000 books in the house. There have been three culls since 2000. What's going on now is the fourth cull. I will hold on to a fairly limited number of books because I want to read or reread them. Everything else is going to various destination. My author copies are being divided as well, between [info]the_child and her mother, Lisa Costello, and the archive. Overage will either be given to interested friends or donated to OSFCI for future convention bag stuffers.

Again, a big part of my life being boxed and put away forever.


I am still driving the Genre car. This would be a 2002 Chrysler Sebring convertible with about 101,000 miles on it. I only drive in the mornings if I can possibly help it, because my increasing fatigue and loopiness as the day goes on increases my risk on the road later in the day. I expect by the fall to never be driving again. The plan has been to let [info]the_child learn to drive on this vehicle (she turns 16 in October), and then simply give it to her as a first car.

So the last few days I've been jonesing to sell the Sebring off and buy a gently used first generation BMW Z3. Which [info]the_child would like a whole lot more than she likes my Sebring, plus with the original 1.9 liter motor, they're actually fairly slow, and with no back seat, she will be a lot less likely to be driving around with a carload of drunken friends or off getting jiggy in the car of a Saturday night.

Excuses, excuses.

This is all a big giant piece of WTFery. My backbrain is looking for positive steps. My frontbrain is saying, uh, no, you don't have the money and even if you did it's a stupid idea.

It's amazing, the stuff my brain and I come up with.

Regorafenib, second series

We are now into the second week of the second three-week series of my good friend Regorafenib. So far, so okay. At this point in the first series, I was pretty damned miserable. We're doing much better at both anticipating and managing side effects this time around. It's also possible I've already peaked on those, and this is me adapting. Medical opinion is split on whether the peak comes during first series or second series. Go me?

By the way, to deal with the foot pain, which is specific to my soles, we have found a terrific product called Icy Feet. Basically, these are sandal shaped blue ice packs. They're made for people with plantar fasciitis, and for athletes with foot problems. But they work like gangbusters for the kind of pain that Regorafenib inflicts on me. Check 'em out.

Disability Filing Process

Still going through the disability filing process. What a circus. As mentioned before, I'll have a lot to say about this in the fullness of time. Last night I learned a weird thing. For SSDI, treatment effects are not considered a qualifying disability.

Think about that for a moment. When I was on FOLFIRI a couple of years ago, I was sleeping 12-13 hours per day, spending 2-3 hours per day on the toilet, could not do simple math, and had trouble focusing to read, among other things. All of those were treatment effects from the drugs. I never felt the cancer at all. Yet according to the Social Security Administration, I would not have been considered disabled at that point.

How in the hell does that make any sense? Another example of the punitive nature of our disability system. American society is so bloody Calvinistic: if you've had the misfortune to fall ill, that is a judgment of God that you are unworthy and must be punished. I'd prefer a little old fashioned compassion plus some common sense, thank you very much. We'd all be better off for it.

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User: joycemocha
Date: 2013-07-02 15:07 (UTC)
Subject: (no subject)
Re disability--what a damned mess. It's one reason why DS doesn't qualify for disability, and if he ever needs to do it, we anticipate at least two rounds of applications before it happens.

Glad you've found something for the foot pain. Any more, when I'm dealing with pain, I just go straight for what athletes do (but by some definitions, I guess I'm considered an athlete these days). The physical therapy is more rigorous (read: effective) and the pain relief treatments are more specific to the areas of injury and work even if you're doing stuff.

I'm almost seconding your backbrain on the car stuff. The Genre car is a Chrysler product, and my experience with those (LeBaron, Horizon) is that durability can be an issue. But then again, my experience is with 80s-era Chryslers, so take it with a grain of salt.

Do you have a stick or an automatic? If it's an automatic and the_child wants to learn how to drive a stick shift, I can contribute. Granted, the Subie is a six speed, but considering I started my son out in a stick shift sports car (deliberately, knowing he was itchy to get out there and Drive Real Fast, I wanted to disabuse him of the notion quickly), I think I can be semi-decent at it.
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User: martianmooncrab
Date: 2013-07-02 18:51 (UTC)
Subject: (no subject)
treatment effects are not considered a qualifying disability

because thats a Choice, otherwise you wouldnt be having those issues.

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User: melissajm
Date: 2013-07-02 21:39 (UTC)
Subject: (no subject)
SSDI hasn't turned you down, have they, Jay? I'll be incredulous if stage 4 cancer doesn't qualify.
And I'm sorry you're going through this.
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Jay Lake
User: jaylake
Date: 2013-07-03 19:24 (UTC)
Subject: (no subject)
Well, can I work? And side effects don't count. We'll see what happens.
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User: melissajm
Date: 2013-07-03 22:40 (UTC)
Subject: (no subject)
I'm pretty sure the SSA Listing of Impairments is publicly available online, and could answer the question.
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