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Jay Lake
Date: 2013-07-10 07:01
Subject: [cancer] FIeld Notes from Cancerland, coming home edition
Security: Public
Tags:cancer, child, death, family, friends, health, personal, radiantlisa, sex
Feet and Other Side Effects

Just these past couple of days, the Regorafenib has decided to talk to me through my feet. Last night whilst trying to fall asleep, I experienced a deep, dull ache in my left foot, while my right foot itched and burned terribly. It was quite distracting. Also a bit odd in the asymmetry. Clearly I should be icing more. In other news, my GI continues wonky in fairly inconsistent ways. Which admittedly is hardly news, but it's annoying in that I keep having to adapt my behaviors and expectations. For example, the drive home from Long Beach yesterday afternoon included about 45 minutes of me in roadside restrooms. Given that it's normally a three-hour trip, this is a significant factor.

More Dreams

Last night, I had another weird dream, though my recollection of this one is more fragmented. This one also had a multimedia element. But instead of Dick and Jane, the vernacular was graphic novels. Specifically Batman as a seventeenth century witchfinder in Dutch Gotham. Which I was apparently scripting or possibly penciling. And another round of trying to find people, of losing track of tasks and belongings and details. Another dream about limitation, with a whiff of escape.

More Basementing

Part of the tribe is coming over this afternoon for what will probably be the final push through my basement. There's a significant number of books to go to Powell's, and my own backstock to be dealt with. Plus general furniture management, tool consolidation, cleaning up, and arranging. I mean, what do I do with my Dad's late 1940's American Flyer train set? He doesn't want it back, and it seems almost criminal to let go of that. And so on and so on. Packing up a life isn't easy.

Disability and Finances

My Short Term Disability claim was formally approved yesterday. Long term claims progress on various fronts, but they all have 3-5 month lead times. I am having to provide exhaustive financial documentation to the financial planners who are helping me sort out my estate planning and the transition for Mother of the Child and [info]the_child after I'm gone. So that stays busy, but fairly soon will be out of my hands.

Cancer and Sex

Lisa Costello and I were discussing my libido and my sexuality yesterday. I won't go into details in this post, but may elaborate later under cut in a TMI post. Suffice to say that under the influence of both the illness and the treatments I've shifted in some ways which are probably permanent. It's an interesting transition, viewed intellectually, but is also another form of narrowing and focusing of my life.


I have not had a meaningful argument with my parents since I stopped being a teen-aged asshole. We get along well, and our worldviews overlap substantially enough that there aren't many points of potential critical disagreement. Plus my whole family runs on the same rubric that I do: there isn't enough kindness in the world, so you may as well be nice. However, Dad and I almost got into one this week when talking about finances. Specifically we were discussing how [info]the_child's private school tuition would be paid this fall, when I will be very financially constrained, and how it will be paid in future years. I commented that the life insurance settlement would take care of the coming years. He got kind of upset with me.

Dad thinks I'm too negative. So does [info]the_child. But I know what I know. There's close to two dozen tumors, possibly more, growing very rapidly in my liver and lungs and abdominal cavity. If the Regorafenib works, we might buy as much as a year of extra life. When it fails, now or later, we'll actively pursue options for clinical trials. I'm not giving up. Not an inch.

But I cannot afford hope. In the course of this disease I have been confronted time and again with circumstances more dire than even my deepest fears. Hope is just a recipe for emotional brutalizing. I always expect the worst these days, and I am rarely disappointed.

This is what keeps me alive.

It's hard for Dad, or my daughter, or many of the other people in my life to understand that attitude. But it's the only way I get out of bed in the morning. Whatever the pathological opposite of denial is, that's what I practice. Here I am.

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Debbie N.
User: wild_irises
Date: 2013-07-10 14:56 (UTC)
Subject: (no subject)
The last time I saw my brother alive was on a visit in February of this year, when he was doing (for his situation) very well. We played a number of games of Anagrams, which is the thing that we did together for all of our adult lives. It's a hard game with a long learning curve and none of his family has ever wanted to learn it.

After a game (I think the last game), he got up to go lie down for a while, like he did. He said to his 20-year-old daughter, who had been watching us, "You'll have to learn to play."

"No," she said.

"Who's going to sit at the kitchen table and play with Aunt Debbie when I'm not here?"

It seemed kind of theoretical at the time, but it made my eyes fill with tears anyway. When David was gone, Emma looked at me, saw the tears, and said, "It's hard to hear. I know."

I think these things are simply clearer from where you sit than where your father sits. But he has to find some way to accept that you are doing what's right for you.
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User: a_cubed
Date: 2013-07-11 23:54 (UTC)
Subject: (no subject)
There's a difference between pessimism and realism that a lot of people can't come to terms with. I don't think you're pessimistic or fatalistic about your situation, but you are realistic. For the sake of your family (particularly The Child) this is a good thing. It means you are making decisions based on your best estimation of the likely outcomes. When you have a choice about things such as in the financial planning issues, all you can do is look at things realistically.
But, as you've said before you also understand that your terminal diagnosis is very hard emotionally on your family as well as yourself, so I think your dad's difficulty with accepting your realism is understandable, too.
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User: mcjulie
Date: 2013-07-10 15:03 (UTC)
Subject: (no subject)
As for “despair,” the meaning of this expression is extremely simple. It merely means that we limit ourselves to a reliance upon that which is within our wills, or within the sum of the probabilities which render our action feasible. Whenever one wills anything, there are always these elements of probability. If I am counting upon a visit from a friend, who may be coming by train or by tram, I presuppose that the train will arrive at the appointed time, or that the tram will not be derailed. I remain in the realm of possibilities; but one does not rely upon any possibilities beyond those that are strictly concerned in one’s action. Beyond the point at which the possibilities under consideration cease to affect my action, I ought to disinterest myself. For there is no God and no prevenient design, which can adapt the world and all its possibilities to my will. When Descartes said, “Conquer yourself rather than the world,” what he meant was, at bottom, the same – that we should act without hope.
-- Jean Paul Sartre
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User: deborahjross
Date: 2013-07-10 15:55 (UTC)
Subject: (no subject)
You feel how you feel. It's your life, your feelings.
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User: martianmooncrab
Date: 2013-07-10 18:55 (UTC)
Subject: (no subject)
He got kind of upset with me.

Parents tend to do that with their kids. Under the circumstances, your folks are holding up well with your illness. I have gotten the impression that your folks do like you, and they want you around.
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User: shelly_rae
Date: 2013-07-11 03:49 (UTC)
Subject: (no subject)
It's not negativity. It's care-taking practicality. Makes sense to me.
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