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Jay Lake
Date: 2009-06-22 04:50
Subject: [cancer] Big pink hammer hanging over my head
Security: Public
Tags:books, cancer, endurance, health, personal, travel, work
A bit of interim updatery on the cancer front:

None of the material facts and ambiguities of my case have changed in the past couple of weeks. In summary, we have three areas of concern, and several paths towards an outcome.

There's a small (0.5 cm) spot on my lung, which may be just old scar tissue. We don't have good prior imaging for reference on that one.

There are multiple sites in my lymph system which are not strongly represented, meaning that if they are tumors, they're very small. These may have been a transient infection at the last time of imaging.

There's a somewhat larger (1.0 cm spherical) spot in the upper lobe of my liver. That's new from last year's scans, and while neither of my docs has so far been willing to conclusively call it cancer yet, there's no credible alternate theory, and a fair amount of circumstantial evidence that it is.

The next set of steps include a general physical today, to baseline my glucose, cholesterol and other general health indicators before any cancer treatments. (Last year's surgery played merry hell with my insulin levels, and at the time, we had no baseline data, so it wasn't clear if I was pre-diabetic prior to surgery.) Lab results are already in, glucose levels are excellently appropriate, cholesterol levels are iffy but not disastrous.

Thursday morning, very early, I have an MRI here at OHSU. That is another attempt to determine the status of my liver spot. As I understand this test, the results will either be continued ambiguity, or confirm that it is a tumor.

Next Tuesday (6/30), I have a second opinion followup with an oncologist at UCSF. Again, my understanding is that the outcome will either be continued ambiguity, or a more aggressive diagnosis.

Around mid-July, if we're still not at a firm diagnosis, I have another CT scan, specifically to review the three sites of interest and see if any of the spots have grown or progressed. That would confirm their tumor status.

Insofar as I can tell, no one is prepared to rule out cancer. We don't have an alternate theory on the liver spot. But as my oncologist said, we don't do chemo just because we're worried about something. I don't see another outcome (and neither does my cancer surgeon, he's more confident of the diagnosis), but they want more data to confirm the diagnosis and the treatment plan.

Once the treatment plan starts up, all bets are off. Most likely path is liver surgery, followed by chemotherapy once post-surgical recovery has proceeded far enough. That will sideline me for weeks with the surgery, and slow me down considerably for six months or more with the chemo.

If none of these steps finalizes a diagnosis, I'm not sure what will happen next. I'm absolutely unwilling to walk away from a novel spot in my liver. Especially given my established cancer history.

All of the above decision points and next steps have made forward planning a bit of a bitch. Working on the initial draft of Endurance right now is purely an act of faith on my part. I've stopped doing any travel planning post-WorldCon, for lack of desire to accumulate nonrefundable tickets I'd just have to ditch. It's affecting Day Jobbe commitments.

I call this "the cancer hammer." I'm waiting for the hammer to come down (or, possibly, be taken off the table). The uncertainty is challenging as hell.

So I live, I love and I write.

Originally published at jlake.com.

Post A Comment | 13 Comments | | Flag | Link

User: etcet
Date: 2009-06-22 13:05 (UTC)
Subject: (no subject)
Something recently re-crossed my mind, and it strikes me as the sort of notion you'd get a kick out of: One of my earliest freelance editing clients (ie: I edited his stuff), a very nice guy (despite our very different politics) named Fran Porretto, did a story based on the conceit of, to coin a phrase, "oncolomancy."

He's made it available online, albeit login-restricted, here.
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kyle cassidy
User: kylecassidy
Date: 2009-06-22 13:09 (UTC)
Subject: (no subject)
i shall look forward to seeing you at worldcon.
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Jay Lake
User: jaylake
Date: 2009-06-22 13:34 (UTC)
Subject: (no subject)
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Samantha Ling
User: lingtm
Date: 2009-06-22 13:50 (UTC)
Subject: (no subject)
*Big Hugs*

I hope all of this turns out to be nothing major.
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User: lauriemann
Date: 2009-06-22 14:48 (UTC)
Subject: (no subject)
Sometimes...oh, heck, a good comedy or rose-colored glasses can be helpful to obscure that hammer for a bit.

Hope the next round of tests go OK.
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Lawrence M. Schoen
User: klingonguy
Date: 2009-06-22 15:44 (UTC)
Subject: (no subject)
So I live, I love and I write.

An excellent place to stand.
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User: yourbob
Date: 2009-06-22 15:55 (UTC)
Subject: (no subject)
uncertainty definitely is a bitch. I wish you knowledge.
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Jon Gibbs
User: jongibbs
Date: 2009-06-22 18:08 (UTC)
Subject: (no subject)
Keep your chin up :)
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User: dsgood
Date: 2009-06-22 19:06 (UTC)
Subject: (no subject)
Good luck!
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Leah Cutter: True Nature
User: lrcutter
Date: 2009-06-22 19:50 (UTC)
Subject: (no subject)
Keyword:True Nature
Limbo is hell. Truly.

Thinking of you and wishing you more knowledge, as well as the best possible outcomes.
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Allison Lonsdale: medical
User: caprine
Date: 2009-06-22 23:11 (UTC)
Subject: (no subject)
Sending you good thoughts.
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Paul Haines
User: paulhaines
Date: 2009-06-23 01:50 (UTC)
Subject: (no subject)
Hey, just a thought, re the spot on the liver.

I recently had radio frequency ablation (RFA) where they drill a hole in you, stick a wire directly into the tumour and electrocute it (and you) for 20 minutes. Overnight procedure and with a 95% success rate when the tumours are small. Maybe worth investigating as opposed to the old-open-you-up-and-chop-out-half-the-liver thing they do (which I also had done!)
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Jay Lake
User: jaylake
Date: 2009-06-23 03:05 (UTC)
Subject: (no subject)
Thank you.
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