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[cancer] The CT news, and some further thoughts on walking with death on one's shoulder - Lakeshore
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Jay Lake
Date: 2012-11-21 05:32
Subject: [cancer] The CT news, and some further thoughts on walking with death on one's shoulder
Security: Public
Tags:cancer, health, personal
First off, the CT scan came back good yesterday morning, for that value of "good" which says, "You still have three tumors in your liver, but at least you don't have any new ones there or elsewhere." So, yeah. I'll see my oncologist today, but at this point I don't expect any redirection of treatment. There is always room for surprise, of course, but the nastiest ones have been avoided for now.

The radiologist summarized it thusly:
Recurrent/metastatic tumor along the inferior margin of the prior right lobe resection is minimally decreased in size. Trace soft tissue attenuation along the gallbladder fossa appears unchanged in size. No new site of metastatic disease identified.


Given that my tumors grew 50% in the four weeks before this third course of chemotherapy began, that they are stable and/or minimally decreased nine weeks in is a distinct improvement. I'm not sure that we weren't looking for a more meaningful shrinkage, but that's a much smaller class of problem that was feared. I'll know more this afternoon.

But the fear. Oh, the fear of the scan. Abject, existential terror, to be more precise. And behind the fear, rage. Oh, the rage.

The really bad news in my life comes via CT scan. That's how all three of my metastatic outbreaks have been discovered, the first one literally by accident. (They weren't looking for anything of the kind on the CT scan that happened to reveal my lung metastasis.) When my terminal diagnosis comes, as it quite likely will sometime in the next few years, it will be via CT scan that we first understand the dreadful news. That's what I (and many others) were afraid of with this CT scan.

I am reminded of William Gibson's Neuromancer, in which The Dixie Flatline says, "Every AI ever built has an electromagnetic shotgun wired to its forehead." For me, the CT scanner is that electromagnetic shotgun wired to my forehead. Literally any time I slide into that giant plastic donut on the motorized bed, I am at material risk of a death sentence.

This is magical thinking, pure and simple. The CT scan doesn't actually have anything to do with the state of my cancer. I'm just potshotting the messenger. But the CT scan is when Schrödinger's catbox gets opened. The uncertain position and velocity states of my cancer collapse. A thing which was true by not known until that moment is now true and known. The pivot point of the plot is reached in that moment of spiralling radiation. Thusly, the CT scan becomes my focal point.

Imagine for yourself how you'd feel if once every few months you walk outside your home and knowingly wait for a sniper take a shot. Maybe the bullet spangs off the sidewalk and whizzes into the cold distance. Maybe it hits you in some not-quite-vital organ, requiring months of treatment and pain. Sooner or later, that bullet is going to hit you someplace that can't be treated. If you don't do your part and go outside for the shot as scheduled, the sniper will just surprise you with a shot through the window some random day, except then they'll use a much heavier caliber bullet.

That's my life these days. The metaphor is imperfect. The CT scan isn't the sniper, cancer is. But the CT scan is where I find out if the bullet hit the bone this time. And if I duck the CT scan out of fear, or its proxies denial and avoidance, the news will only be worse when it comes. Cancer undetected is cancer ascendant, after all. It almost never, ever goes away on its own.

How would you feel in this situation?

And to make matters worse, the time between hearing the gunshot and knowing where the bullet hit is measured in hours, or even days. In this case, I got the CT results about 24 hours after the scan.

It's fucking terrifying. And there's nothing to be done but endure. Ducking the CT scans would just mean we find the cancers more developed, therefore harder to treat and of even higher mortality risk. You can't run away from this sniper.

Abject, existential terror. How would you feel?

My therapist says I walk with death on my shoulder — he cribbed that from Carlos Castaneda. I think he means my awareness of mortality is immediate and pervasive, unusually so for someone of my age. (Born in June of 1964, 48 as of this writing, for those following along at home.) Maybe this is supposed to make me feel serene or wise or something. Which might be true, if I were a working class hero on a spiritual journey. Mostly it just makes me afraid.

Except even fear becomes boring.

The CT scans, the scanxiety, that's like a fear booster shot. Fear shifts from boring to immediate and agonizing.

Fuck cancer.

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Kate Schaefer: First Icon
User: kate_schaefer
Date: 2012-11-21 16:06 (UTC)
Subject: (no subject)
Keyword:First Icon
Yay relatively neutral news?

Awareness of death is a weird thing. I may have told you before that I nearly died from anaphylactic shock nearly half my life ago, when I was thirty. It gave me a different attitude toward life ever since. I know there's a big difference between a near-death experience and a condition that could bring it on again any day (my ridiculous quantity of scary allergies) and a near-death experience and a condition that makes you sicker all the time, a huge difference, and that difference introduces a bit of diffidence in how I talk about it with you.

This comment probably belonged in the post where you were musing about thinking about cancer as terminal versus thinking of it as a chronic disease. My allergies could be the thing that kills me, and it could happen any day if I'm careless about what I eat or (sometimes) where I breathe. I have walking pneumonia now because I went on living in my house while we had a bunch of work done on it rather than go stay somewhere else for the duration (I'm nearly recovered; walking pneumonia's very treatable).

The allergies are scary, but there are lots of things I can do to keep my reactions to them down to a manageable level. They might kill me tomorrow, but I'm much more likely to live to my eighties and die of heart failure. Your odds are different, and that makes the whole thing harder to manage. It's not the certainty of death, which is certain for all of us. It's not the nearness of death. You'd probably do fine with actual imminent death; I did fine when I thought I was going to die in the next minute. It's the constant threat of not-quite-imminent death that's so tiring and, as you say, boring to experience after a while. It's a kind of combat fatigue without the medals.

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melissajm
User: melissajm
Date: 2012-11-21 23:44 (UTC)
Subject: (no subject)
I'm so sorry you have to go through this. (I get my liver and throat scanned every year, and every time I go cold with dread.) I'm glad the news was relatively good, though.
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Swan Tower: swan
User: swan_tower
Date: 2012-11-21 16:31 (UTC)
Subject: (no subject)
Keyword:swan
Relieved to know the news is, by the standards of this situation, good.

And what you say about the CT scan totally makes sense. I have that same kind of reaction even on much smaller-scale things -- going to the orthopedist to find out whether I'm going to need surgery on my hip, for example. The appointment isn't the source of the problem, but it's the thing I can focus on, so it's where my fear goes. It's entirely reasonable that you focus on the CT scan -- and your sniper analogy is a good way of illustrating it.

Fuck cancer.
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MG Ellington
User: xjenavivex
Date: 2012-11-21 16:37 (UTC)
Subject: (no subject)
fuck cancer
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Richard Parks: pic#98248748
User: ogre_san
Date: 2012-11-21 16:56 (UTC)
Subject: (no subject)
Keyword:pic#98248748
Of course you're scared and angry. Sounds to me like a perfectly sensible reaction. I think I'd be a quivering wreck.

Edited at 2012-11-21 04:58 pm (UTC)
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mevennen
User: mevennen
Date: 2012-11-21 22:13 (UTC)
Subject: (no subject)
I totally agree. I have the fear for someone else (T's oncology check is on Monday coming) but it feels like looking down a gun all the time.

I am glad this was reasonable news under the circumstances.
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Deborah J. Ross
User: deborahjross
Date: 2012-11-21 20:35 (UTC)
Subject: (no subject)
Gentle hugs to you.

This is so hard. But you're not alone - I think you know that.
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mmegaera
User: mmegaera
Date: 2012-11-22 00:35 (UTC)
Subject: (no subject)
Adventure is someone else in abject terror a long, long ways away.

OWTTE, I forget the exact quote.

It's amazing what we put our fictional heroes through that we wouldn't touch ourselves with a barge pole given the opportunity.

And I'm very glad the CAT scan didn't show you something new and terrible.
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Max Kaehn: MAX ZEN
User: slothman
Date: 2012-11-22 00:58 (UTC)
Subject: (no subject)
Keyword:MAX ZEN
I imagine I would spend a lot of time with the free-falling pit-in-the-stomach feeling, plus a nagging “if you had spent more time doing zazen, you might be better at letting go of this” feeling from my conscience. (I’m pretty good at getting butt on zafu every weekday morning, but am not yet diligent about attending the intensive retreats.) I would have very much the same “since we don’t know yet, the scan is when we find out what universe we’re in” feeling (based on the many-worlds interpretation of quantum mechanics). And, based on my experience of supporting my wife in having an interesting-though-noncancerous growth in her skull and pressing on the cerebral carotid artery, I would feel very, very tired; emotionally exhausted.

Having the fear become boring may be the beginning of serenity. Nirvana is literally “blowing out”, extinguishing the fires of greed, hatred, and delusion. I used to experience outrage, but back in the mid-noughties, between my wife’s illness and paying attention to the deeds of the Bush administration, I just ran out of it and it never came back (years before I took up Zen). The inside of my head is still a noisy place— I am a long way from being ready for dharma transmission!— but I’ve been in a “just pay attention and do what needs to be done” space for quite a while now.
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punkrocker1991: books
User: punkrocker1991
Date: 2012-11-22 01:28 (UTC)
Subject: (no subject)
Keyword:books
Sending you thoughts of peace, strength and hope.
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Lupa
User: lupagreenwolf
Date: 2012-11-22 03:15 (UTC)
Subject: (no subject)
Fuck cancer.

And I don't blame you one bit for hating the CT scans so much; you've come to associate them with Bad News, and who can blame you for your brain making those connections for future projections, even when you know better.

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amphigori: bfly
User: amphigori
Date: 2012-11-22 05:10 (UTC)
Subject: (no subject)
Keyword:bfly
I'm glad the scan came back with relatively good news, as opposed to dreadful news.

Kia kaha.
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martianmooncrab
User: martianmooncrab
Date: 2012-11-22 05:34 (UTC)
Subject: (no subject)
its good news... as can be...

If I had a tumor trying to snuggle up to my gallbladder, I would lose the gallbladder..
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Lethran: Angel
User: gwyd
Date: 2012-11-22 09:35 (UTC)
Subject: (no subject)
Keyword:Angel
My personal death sentence is rather slower, but I've watched the end game three times, it being genetic. I often think of the line from Townes Van Zandt's Cocaine Blues: "they say it'll kill me but they won't say when."

I think it's better looking it in the eye and having reasonable expectations. That time I nearly died from an unrelated health thing I couldn't get Doctors to take seriously for five years, the surgeon was clearly bracing himself to give me the bad news. He was expecting scene. I was merely relieved that I wouldn't have to fight anymore to get someone to listen. I'd rather put the energy into doing what I can do given the limitations than fighting reality.

I admire your character tremendously, despite being fairly new to your blog.
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Jay Lake
User: jaylake
Date: 2012-11-22 15:47 (UTC)
Subject: (no subject)
Thank you. And I love that Van Zandt line.

Good luck and good health to you.
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Lethran: Derringer
User: gwyd
Date: 2012-11-24 06:17 (UTC)
Subject: (no subject)
Keyword:Derringer
God luck and good health to you as well.
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a_cubed
User: a_cubed
Date: 2012-11-22 12:28 (UTC)
Subject: (no subject)
Fuck cancer indeed, but at least the news is not so bad. Not as good as it could have been, but far from as bad as it could have been.
The brain, and I think the mind, react to change far more than steady state. The mind can, however, imagine the change in advance. As a creative person your imagination is heightened about that of most and hence the CT scans are of course the trigger for your imagination putting the fear into different modes, which takes away the steady state, which is more bearable. This post had me almost in tears about your situation. Best wishes.
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