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[cancer] The ties that unbind us - Lakeshore
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Jay Lake
Date: 2013-01-08 05:42
Subject: [cancer] The ties that unbind us
Security: Public
Tags:cancer, family, health, personal
Yesterday afternoon I posted an update on yesterday morning's oncology consult. [ jlake.com | LiveJournal ] That's all the facts there are, for now. Oncology is a matter of statistics and post facto analysis. The situation is rarely clear in advance or while in progress.

I'm pretty sure we're at a turning point here. If things play out as the odds suggest and I expect, my life expectancy has dropped again, to probably a year or two. Not much less, because even if I went terminal right now, it would take me about a year to die. This is also barring something approaching a miracle. Which is, of course, the point of genetic testing I'm seeking. I'm miracle shopping within the realm of allopathic medicine. I don't plan to bust out the alternative remedies even in desperation, because I can't shake my conviction that the universe operates on evidence-based principles. Same reason I'm not a political conservative or a religious faith-holder — except for occasional intellectual errors on my own part, dogma of any kind never trumps objective reality for me.

Still, this metastasis is different from the others. Even if Ashcroft is a false alarm, the simple fact that I've progressed to multifocal tumors in an already-ravaged organ is bad enough. Monday was the first time my doctor and I had spoken seriously about when to turn to Long Term Disability. i.e., that point where I stop working and expect never to be able to go back.

Horror, I think, is a function of surprise. The human mind can routinize anything. Objectively speaking, my life is a horror every day. If I'd woken up ten years ago to be where I am today with no transition, I'd run screaming into the night. As it is, I wake up every day feeling so out of sorts and ill that ten years ago I'd have presented at the Emergency Room. Nowadays, I'm just profoundly thankful when my GI isn't out of control.

The ties that make up my life — anyone's life — keep being loosened by this disease. My family is paying a terrible price for my illness. I am increasingly likely to be paying the ultimate price for it. No discounts here. Trying to maintain some grace and dignity and love along the way is my job now as much as anything. That, and still watching for the possibility of that miracle. Or since I don't believe in miracles, that statistical outlier.

Unbound, I am nothing but a man whose heart is exposed to the elements. This is what cancer continues to do to me and everyone who loves me. It strips our hearts bare and leaves us with nothing but what we can conjure from our own depths.

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Shefa: hand reaching
User: shefa
Date: 2013-01-08 14:12 (UTC)
Subject: (no subject)
Keyword:hand reaching
You often leave me speechless, Jay. I wish there were some magic or something miraculous that I could pass through this screen into your hands. As it is, I'm humbled by the fact that you keep writing, that you continue to stay connected to your community of friends and readers through it all.

Thank you. It sounds like a crazy thing to say, but, thank you.
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devi: me+clio
User: deviantgrrrl
Date: 2013-01-09 05:09 (UTC)
Subject: (no subject)
Keyword:me+clio
This.

I know that I don't know you well, but as I read about your day to day life despite and in defiance of cancer, I can only be humbled by your persistence, warmth, humor, honesty, and overall goodness. You are a good man, and that's not a title I give away lightly.

I am extremely grateful that I've had the good fortune to meet you, and acquaintance that I may be, I am rather fond of you. Thank you for being you. Thank you for allowing all of us to read your thoughts and feelings on this journey. Know that there are many who care for you, and that we're pulling for that statistical outlier, too.

Edited at 2013-01-09 05:10 am (UTC)
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Laura Anne Gilman: dandelion break
User: suricattus
Date: 2013-01-08 14:24 (UTC)
Subject: (no subject)
Keyword:dandelion break
There are no words that work. :-(
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joycemocha
User: joycemocha
Date: 2013-01-08 14:46 (UTC)
Subject: (no subject)
I can only offer hugs.
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torreybird
User: torreybird
Date: 2013-01-08 15:50 (UTC)
Subject: (no subject)
I usually stay shut up if I can't offer a reframe, a repositioning, a rejection.

All I can offer here is sympathy and admiration. And, if link salad needs it, I have some lovely orphaned hammers. Smashing shit angrily seems like as good of a response as any. :-(

Best wishes.
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Richard Parks: pic#98248748
User: ogre_san
Date: 2013-01-08 15:59 (UTC)
Subject: (no subject)
Keyword:pic#98248748
Like pretty much everyone else, if I knew what to say I'd say it. Other than good luck and I'm thinking of you.
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Kate Schaefer: First Icon
User: kate_schaefer
Date: 2013-01-08 16:47 (UTC)
Subject: (no subject)
Keyword:First Icon
I'm not saying goodbye any time soon, Jay.
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Rick Moen
User: rinolj
Date: 2013-01-08 17:11 (UTC)
Subject: (no subject)
Having your hopes and expectations whipsawed is just... wearing, isn't it? Somehow, recalculating Bayesian probabilities continually becomes personal, and you start having to re-estimate even little things like whether you should start following a novel series you probably won't live to see the end of. (Damn you, GRRM.)

Personally, I would (and in fact do) take a lot of comfort in having made the best choice possible with available knowledge at each step, and not made any foolish and fatal blunders. Everyone dies at some point, but nobody need die stupid.

Best Regards,
Rick Moen
rick@linuxmafia.com
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Jay Lake
User: jaylake
Date: 2013-01-08 17:33 (UTC)
Subject: (no subject)
Yeah, that's how I feel about The Hobbit films.

I do take comfort in making the best choices possible, and am confident I have thus far. It's just sometimes the best choice is bad or worst, and I have to settle for least-bad. So many compromises. I know you know this.
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Rick Moen
User: rinolj
Date: 2013-01-08 19:04 (UTC)
Subject: (no subject)
Oh, and I forgot to add: Fuck cancer.

Any chance you might be able to attend Potlatch/Foolscap on Feb. 1-3 in Redmond?
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Jay Lake
User: jaylake
Date: 2013-01-08 21:22 (UTC)
Subject: (no subject)
Sadly, my appearance is highly unlikely as that's less than two weeks after I have open incision liver surgery. Might pop up Saturday if I'm feeling exceptionally good, but it would be a very last minute thing.
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Deborah J. Ross: hands
User: deborahjross
Date: 2013-01-08 17:20 (UTC)
Subject: (no subject)
Keyword:hands
Many gentle hugs.
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Kari Sperring
User: la_marquise_de_
Date: 2013-01-08 19:18 (UTC)
Subject: (no subject)
Much, much love.
Kari
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amphigori: bfly
User: amphigori
Date: 2013-01-08 20:02 (UTC)
Subject: (no subject)
Keyword:bfly
You're in my thoughts. <3
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martianmooncrab
User: martianmooncrab
Date: 2013-01-08 20:49 (UTC)
Subject: (no subject)
There was this odd program on last night about 4am where they were talking about colon cancer, and this company that is making a blood test to diagnose it before its a very big pollup. The CEO of the biocompany was rattling off statistics of costs and viability of current cases, and it was startling.

You are exceptional, I want you to continue to be so, and with the new surgery coming up, I want the docs to find wonderful things when they open you up..
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Rhonda Parrish
User: rhondaparrish
Date: 2013-01-08 21:52 (UTC)
Subject: (no subject)
Your blog posts, your openness and your situation constantly leave me tearful and wordless. This is another one of those times, but I wanted to say something more than <3

My thoughts, for whatever good they do, often turn to you and linger. I feel so very much for you and your family and all that you're going through.

<3
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mmegaera
User: mmegaera
Date: 2013-01-09 01:16 (UTC)
Subject: (no subject)
I hope you end up with one big fat glorious statistical outlier. With whipped cream and a cherry on top.
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jmonell
User: jmonell
Date: 2013-01-09 01:37 (UTC)
Subject: (no subject)
Hi Jay,
I'm sorry to hear about the prognosis. Have you tried Reiki yet?
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Lethran: Crotian
User: gwyd
Date: 2013-01-09 03:19 (UTC)
Subject: (no subject)
Keyword:Crotian
I think your approach is the best one. Better to look rationally at the odds and prepare than be taken by surprise. I very much hope the genetic testing helps find better treatment for you, though.
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Peter Hollo
User: frogworth
Date: 2013-01-09 03:20 (UTC)
Subject: (no subject)
Nothing I can say, I can only send love and hugs, and ask you to just keep on being your wonderful self.
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anghara
User: anghara
Date: 2013-01-09 03:42 (UTC)
Subject: (no subject)
I don't know what I can say that doesn't sound like something that doesn't help much, and that everyone else has already said before, but for what it's worth - I am blindly furious at the random universe on your behalf. I continue to send all the good thoughts I can.
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mcjulie
User: mcjulie
Date: 2013-01-09 15:41 (UTC)
Subject: (no subject)
Now I want to take popular songs and things that talk about miracles and replace the word "miracle" with "statistical outlier"

In spite of my religious upbringing, I've never been fully on board with the idea of miracles. Nobody could explain to my satisfaction why, if God could always just do whatever, he mostly didn't. I eventually concluded that if there was a God, he must be much less interventionist than I had been led to believe.

But I believe fervently in statistical outliers. May the forces of chaos smile upon you and send a beneficial one your way.
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kellymccullough
User: kellymccullough
Date: 2013-01-11 04:15 (UTC)
Subject: (no subject)
Damn. All I've really got is sympathy. You're in my thoughts. Fuck cancer!
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