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Jay Lake
Date: 2009-05-15 07:26
Subject: [cancer] A bit of personal history, for newer readers
Security: Public
Tags:calendula, cancer, health, links, personal
A lot of folks have started following my blog and Twitter feed since last year's Excellent Cancer Adventure. Since I'm teetering on the edge of some possible New Adventures in Cancer, I thought I'd take a moment to catch up anyone that missed the first installments.

April 29th, 2008, I was admitted to the ER at OHSU here in Portland, Oregon with uncontrolled rectal bleeding. On April 30th, I was diagnosed with colon cancer. To be specific, tubulovillous adenocarcinoma (a/k/a cancerous polyp in the colon), with lymphatic involvement. On May 9th, 2008, I had open incision abdominal surgery, a colonic resectioning which removed 22 cm of my sigmoid colon, along with related portions of my circulatory and lymphatic systems.

At the time, medical opinion was that a surgical cure had been effected. I've been on a five-year followup schedule, with the tests this week being the first-year tests.

What we know now is twofold. First, my colon has continued to produce polyps, which is not expected at my age (44). Those polyps are growing rapidly, based on the sizing of what was removed yesterday. I don't yet understand the full implications and risk factors of this, but it suggests that I may never be "clean." However, that problem is fully addressable by continued monitoring.

Second, there is an ambiguous CT scan result on my liver and lymph. As liver and lymph are the two primary paths for metastasis of colon cancer, this represents a meaningful risk factor. As my doctor said, "For you, the risks are either 0% or 100%." I don't have middle ground any more. Today's PET scan is intended to highlight possible tumor activity in both liver and lymph. I do not have a diagnosis yet, just an ambiguous test result. I won't know more til next week, and if experience holds, that will be an unfolding dialog of risk factors, probabilities and further tests.

As I said last year, Why am I sharing this so publicly? Because it isn't shameful, it's annoying. It pisses me off. Cancer is a dirty word. We are taught to turn inward, to conceal our medical travails as if they were weaknesses. In the year since then, more people than I can count now have thanked me for talking about this experience. All of it — medical, emotional, psychological, social.

So I'll keep talking now. In a couple of days, this may all fizzle out. Or I may be back in surgery in a few weeks to have part of my liver removed. Who knows, now? The uncertainty is killing me. I spent a good portion of last night sobbing on calendula_witch's shoulder. I'm so tired of the Fear, and right now life has ladled out another giant, steaming bowl of it.

Nothing for it but to carry on.

If you want to read the whole business from the beginning, the first LiveJournal post is here, and they carry forward to the present day with the "cancer" tag, http://jaylake.livejournal.com/tag/cancer. The same feed can be read at jlake.com starting here, or with the same tag as http://www.jlake.com/tags/cancer.

Off to the Nuclear Medicine unit shortly. (And how cool is that? Nuclear medicine! I'm going to turn into a giant radioactive spider!) I'll report later on the PET scan, then give a catch-up to the mess inside my head.

Originally published at jlake.com.

Post A Comment | 20 Comments | | Flag | Link

User: mevennen
Date: 2009-05-15 15:42 (UTC)
Subject: (no subject)
Here's to fizzling. We're thinking of you, Jay. Tedious bloody process - I hope it goes well at the hospital. But please don't come back glowing in the dark.
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Rhonda Parrish
User: rhondaparrish
Date: 2009-05-15 15:46 (UTC)
Subject: (no subject)
Being a giant radioactive spider would slow down your writing (they only have spider brains and eight legs instead of ten fingers, after all) and that can't be a good thing. So I vote against the spider.

I will keep you in my thoughts.
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User: jackwilliambell
Date: 2009-05-15 15:52 (UTC)
Subject: (no subject)
As usual with this stuff, I don't know what to say but I want to say something supportive and encouraging.

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Jay Lake
User: jaylake
Date: 2009-05-15 21:15 (UTC)
Subject: (no subject)
You have ridden this ride all the way to the bitter end, sir. If it gets fugly, I might introduce you and calendula_witch. Hell, I should introduce you anyway.
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User: jackwilliambell
Date: 2009-05-16 00:34 (UTC)
Subject: (no subject)
Yeah, true about the ride and it aint no fun. But that is past tense now for me, while you are on the train.

And, yes, you should introduce me anyway.
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User: coppervale
Date: 2009-05-15 15:54 (UTC)
Subject: (no subject)
Lots of people are behind you, Jay. (And this one, at the moment, is drawing with you in mind). Keep us posted.
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Somewhat Bent: Blessings
User: ladyallyn
Date: 2009-05-15 16:01 (UTC)
Subject: (no subject)
Well Wishes, my friend, and may you hang around long enough to educate, entertain and annoy us -- and hope to get to know you better :-)

Blessings to you and yours.

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User: bram452
Date: 2009-05-15 16:16 (UTC)
Subject: (no subject)
I hate being reminded that we're mortal. I spend so much time trying to ignore the fact, and then the universe comes along and rubs my nose in it. Just not as hard as it's rubbing yours.

For what it's worth, we're in the boat with you. I hope you die of something else, much later. I would, for instance, recommend a massive coital stroke at 90.
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User: evannichols
Date: 2009-05-15 16:28 (UTC)
Subject: (no subject)
I also appreciate and admire your willingness to share your story. Here's hoping that the scan results are good, and you pick up some superpowers (much better than being a giant radioactive spider).
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Elf M. Sternberg
User: elfs
Date: 2009-05-15 16:58 (UTC)
Subject: (no subject)
My father was a physician and very early adopter of nuclear medicine. He had the first nuclear imagining facility and PET scanner in the state of Florida back in the late 1960s. He was remarkably successful, although he succeeded in pissing away most of his wealth through the mid-80s and early 90's on bad real estate deals.

He was also the youngest man ever to require cataract surgery due to commercial radiation-induced cataract fogging.

So no giant spiders, okay? I mean, sure, you could probably hunt-and-peck at four keyboards at a time, but your sex scenes would get even weirder.
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User: lauriemann
Date: 2009-05-15 17:07 (UTC)
Subject: (no subject)
I'm sorry you are having "foggy" tests. I'm glad you have some extra support at home.

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User: fledgist
Date: 2009-05-15 17:23 (UTC)
Subject: (no subject)
All I can do is send a positive thought your way. Hope you come out with 0 risk.
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User: zellandyne
Date: 2009-05-15 18:03 (UTC)
Subject: (no subject)
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User: misofuhni
Date: 2009-05-15 18:44 (UTC)
Subject: (no subject)
They say laughter is a good antedote. So, to quote Mr. Adams:

Pardon me, but, might I interest you in my liver?

Still thinking positive for you.
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User: farmgirl1146
Date: 2009-05-15 19:16 (UTC)
Subject: (no subject)
My thoughts are positive thoughts. Hugs all around.

If you haven't done so, change your diet to an all organically grown one, at least at home. It will help cut out stuff you don't know you are eating.

Sending love, too.
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Allison Lonsdale
User: caprine
Date: 2009-05-15 19:50 (UTC)
Subject: (no subject)
I send you good wishes.
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User: zhaneel69
Date: 2009-05-15 23:17 (UTC)
Subject: (no subject)
Ugh. I'm so proud of you and in awe of your strength and communication. I hate that the Fear is back, I hate that there is a potential of more bad news. Love you and you are in my thoughts.

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User: mmegaera
Date: 2009-05-16 00:48 (UTC)
Subject: (no subject)
You have one of the healthiest attitudes towards this stupid, idiotic disease that I've ever seen.

If something attacks you that rudely, you have almost an obligation to be pissed at it. And to publicly shame it (not you, it).
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User: kehrli
Date: 2009-05-16 01:53 (UTC)
Subject: (no subject)
Also hoping this will fizzle out.
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