Jay Lake (jaylake) wrote,
Jay Lake

[cancer] A bit of personal history, for newer readers

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.

Tags: calendula, cancer, health, links, personal

  • Post a new comment


    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

← Ctrl ← Alt
Ctrl → Alt →
← Ctrl ← Alt
Ctrl → Alt →