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Jay Lake
Date: 2013-04-02 05:51
Subject: [cancer] Brooding about ambiguity
Security: Public
Tags:cancer, health, personal, writing
I used to think I enjoyed a high tolerance for ambiguity in life. That may or may not have ever been true, my delusions of adequacy notwithstanding, but it's certainly not true these days. Being a cancer patient is nothing but ambiguity.

Many medical issues have well-defined and well-understood progressions. If you get the flu, assuming you're in at least ordinary health, you will recover in a certain number of days with medical intervention, and in a longer number of days without medical intervention. The individual variation on those recovery curves is not profound. Likewise if you break a bone. Assuming at least ordinary health, an orthopedist can tell you about how long to heal, and what the long-term consequences will be.

Cancer is nothing but a numbers game. All an oncologist can tell you is that out of every hundred patients in your situation, a certain percentage will experience this disease course, another percentage will experience that disease course, a third percentage will experience a third disease course, and so on. The mechanisms of cancer are still so complex that it's quite difficult to forecast for individual patients, even those like me with common cancers which are well studied.

This cloud of unknowing can sometimes settle over me like the miasma of a fever swamp. Especially these days, since the January surgery made my prognosis so much worse. The graph of my tumor progression is frightening. I'm incurable now, which is the step before terminal. We know that next terrible step is almost surely coming, quite possibly in the next 2-4 months. But no one knows for sure. No one. Not me, not my oncologists, not Ghu themself.

It's impossible to plan ahead any more. Not as a parent looking at my child, not financially, not in my writing life, not to book vacations or travel or plan future family events.

And that drives me bananas.

There are days when I wish I had a terminal diagnosis. Then at least I'd know the outcome, and what would still be possible for me in the mean time.

I don't mean that seriously, I'm not suicidal. It's just that living with this adenocarcinomic gun to my head makes me more than a little crazy sometimes. As bad as knowing is, not knowing is sometimes worse. So I brood about ambiguity and wonder how to arrange my days and regret stories unwritten and life unlived even before my time.

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Clint Harris
User: wendigomountain
Date: 2013-04-02 14:54 (UTC)
Subject: (no subject)
It's hard to respond to reading something like this. Does reading it warrant a response? I don't know, but it sure as hell hits me in the gut to read it. I've got nothing, Jay. But all I know is that somedays when you are hurting, and you pour your guts out on the page, the last goddamned thing you want is silence in return. I just wanted to let you know that your words are being read. We aren't the ones facing this, but we are listening.
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Jay Lake
User: jaylake
Date: 2013-04-02 15:00 (UTC)
Subject: (no subject)
Thank you.
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User: tillyjane
Date: 2013-04-02 15:14 (UTC)
Subject: (no subject)
and while you regret the stories unwritten and the life unlived, I see you going right on, writing the stories and living the life. This is one of the many things I love so much about you.
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mlerules: beach
User: mlerules
Date: 2013-04-02 16:06 (UTC)
Subject: (no subject)
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scarlettina: Cancer
User: scarlettina
Date: 2013-04-02 15:17 (UTC)
Subject: (no subject)
I have had job interviewers ask me if I'm comfortable with ambiguity. I tell them yes because, really, what choice does one have? There are certainties in life--few but some key ones: death, yes, but also the need for rest, the requirements of hunger. Taxes, at least if you live in the US. We're all going to stand at the dark threshold at some point, and we can only step through it alone. But the when is always unknown. When my dad left for work on July 21, 1973, he didn't know he'd be dead in just a few hours. That being the case, my one thought is to plan without knowing, because, really, what choice does one have? We can plan for living the life we have or plan not to live at all.
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User: Jeff P
Date: 2013-04-02 15:37 (UTC)
Subject: (no subject)
Thanks for this, Scarlettina. A good reminder.
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User: threeoutside
Date: 2013-04-02 15:22 (UTC)
Subject: (no subject)

My standard response when I don't know what to say. Wish I had more, something actually helpful.
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User: joycemocha
Date: 2013-04-02 15:53 (UTC)
Subject: (no subject)
Ambiguity in these circumstances is hell. When my mother got the terminal diagnosis, they gave her something like two to four weeks.

She lasted two months, one of the worst two months of my life because of the ambiguity. I was the one who had to make the call about when to tell my brother in the military to come home so he could see her before she died. Keep in mind that I was 29 years old and my brother was 46 and by that time a full colonel, with a lot of responsibilities. But I ended up being the child with the most emotional responsibility during her dying. It was not an easy death.

My father was given six months and lived for a year. My brothers took care of that one.

But...my friend was given a few days to weeks, and didn't even make it past 36 hours.

I think you're doing the best you can, given what resources and knowledge you have. I know what I think, having seen you at Norwescon this past weekend, and I admire your courage (even though it's tough).

One day at a time, my friend. One day at a time.

And keep in mind that we are here and we are pulling for you. Hugs.
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mlerules: beach
User: mlerules
Date: 2013-04-02 16:08 (UTC)
Subject: (no subject)
*echoing that final sentence*
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User: martianmooncrab
Date: 2013-04-02 18:50 (UTC)
Subject: (no subject)
You are not a container of yogurt with a Best By Date stamped somewhere on you, a Use By date, or a clearly stated Expiration Date.

You defy odds, dont stop now.

I have been through the "there is nothing wrong with you" medical experience when there really was something wrong, so you have the facts of what is happening, and that is a better way to deal with it in my mind.

Make them work for it I say.

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User: mmegaera
Date: 2013-04-02 19:17 (UTC)
Subject: (no subject)
Reading your posts over the last few years has made me more conscious of my own mortality. This is not a bad thing. It's a kick in the rear, and I thank you for it.

However, I do wish TPTB had found a far less lethal way to get you to communicate it. With all my heart.
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User: cathshaffer
Date: 2013-04-02 21:40 (UTC)
Subject: (no subject)
As people progress in an illness, there comes a lot of ambiguity and complications. It's very hard. You are not wrong to envy the simplicity of a terminal diagnosis, and it's not a suicidal impulse. It's a sign that you are emotionally capable of moving to the next stage. I haven't given up hope for you, but I know hard this must be for you. The two months my mom spent in ICU were filled with awful uncertainty and ambiguity. In retrospect, I know that taking her off the vent to begin with would have been easier for everyone.
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Brian Blalock
User: blblalock
Date: 2013-04-03 09:03 (UTC)
Subject: (no subject)
Sometimes I find words inadequate. This is one of those times.

I'd hoped to come back to LJ and celebrate the successes of my old acquaintances, so I'm going to continue to do that.

Know that I'm happy for your success, and that for the rest, you have my deepest sympathy.
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