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[cancer] Here we go again - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2011-04-18 15:08
Subject: [cancer] Here we go again
Security: Public
Tags:cancer, conventions, health, personal
I met with my oncologist this morning. I have a 35 mm diameter metastatic tumor in the right lobe of my liver. We are certain this is not a repeat of the false alarm of last year because the medical imaging is corroborated by the elevated CEA levels in my bloodstream, which in turn are highly indicative of liver metastases, among other things.

The proposed course of treatment is a chemo regimen of FOLFIRI interrupted by a liver resectioning. FOLFIRI's side effects include significant hair loss, elevated fatigue (in comparison to FOLFOX) and more extreme lower GI symptoms.

The current plan is to start chemo on Friday, May 13th, continue for four sessions on a bi-weekly schedule, then interrupt chemo to conduct the surgery, around mid-July. Around late August I will return for eight more bi-weekly chemo sessions. The purpose of the interrupted chemo schedule to ascertain through direct observation of the re-sected tissue whether the chemo course is having an effect on my cancer. If it is not effective, we will resume chemo with a different regimen.

A review of the older CTs suggests this tumor was present prior to my FOLFOX course, but evaluated at the time as a malformation of the blood vessels in the liver. This is ironic for obvious reasons, but also good news, because it means the current metastasis isn't a post-FOLFOX metastasis. Which is to say, the FOLFOX course may well have been effective.

Also, as this is a readily accessible, single-site metastasis, we continue to view my treatment goal as an eventual full cure. My oncologist has reclassed me back to 30%/5-year survival rate, and suggests that we're about 50/50 on achieving full cure. I'm not sure I understand how those two statistics are compatible, but that's how she put it. I would characterize her as neither particularly optimistic nor particularly resigned.

We did discuss the value of continue treatment, and life extension versus quality of life remaining. As we're still aiming for a full cure, and even in the event of mortality we're talking about years, not months, we have decided to proceed with the planned treatment. She indicates I'm not a candidate for clinical trials as I have not yet exhausted the core chemotherapy regimens, and my tumor is surgically addressable.

My own emotional picture is deeply mixed in very obvious ways. I recognize that of all the bad things this could be, what we're facing is about the least-bad. At the same time, I'm about to lose another year of my life to this. My last round of chemo came at an incredibly high cost to me personally, emotionally and professionally. I do not expect this to go any more lightly on me.

Still, I will survive.

PS - Though given this news I do not expect to make any more convention appearances this year after Norwescon, JayCon will still be occurring June 4th. Please come celebrate my life if you can.
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User: elizaeffect
Date: 2011-04-18 22:10 (UTC)
Subject: (no subject)
Jesus H. Christ. Like I said on Twitter, we're all pulling for you here. :(
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User: swan_tower
Date: 2011-04-18 22:11 (UTC)
Subject: (no subject)
Keyword:swan
Shit. I see that it could be worse, but I'm sorry it isn't better.

We are, indeed, all pulling for you.
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Leela
User: leela_cat
Date: 2011-04-18 22:17 (UTC)
Subject: (no subject)
Shit fuck... damn it.

Surviving is good and my thoughts are with you.

*hugs*
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anghara
User: anghara
Date: 2011-04-18 22:24 (UTC)
Subject: (no subject)
dammit dammit DAMMIT. And dammit once more for emphasis.

Not sure what I can do, except offer sympathy and my continued support for unmitigated defiance of any odds which are impertinent enough to set themselves against you. Am thinking furious good thoughts.
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martianmooncrab
User: martianmooncrab
Date: 2011-04-18 22:47 (UTC)
Subject: (no subject)
least bad is better than bad bad...

now you can make jokes about fava beans...
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Matthew S. Rotundo: Typewriter
User: matthewsrotundo
Date: 2011-04-18 22:49 (UTC)
Subject: (no subject)
Keyword:Typewriter
Fuck.

Well, we know the drill. It will be a shit year, no doubt, but as you say, you will survive.

Strength to you, my friend.
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Misty Marshall
User: mistymarshall
Date: 2011-04-18 22:54 (UTC)
Subject: (no subject)
I hate that this is not the news I was hoping to hear..fuck. But I am glad it is not a worse scenario too. Love and hugs and support from far away. I hope this is a much less stressful chemo round if possible. Wish I could just wrap you in a warm blanket of emotional comfort right now. Just dammit......
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selfavowedgeek: Conan and Serpent
User: selfavowedgeek
Date: 2011-04-18 23:00 (UTC)
Subject: (no subject)
Keyword:Conan and Serpent
In your corner, Jay.
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User: deborahjross
Date: 2011-04-18 23:10 (UTC)
Subject: (no subject)
Keyword:blue hills
What everyone said about the shittiness of this...but also about the hope.

My friend with ovarian cancer is still coming to terms with her test results from last summer which took the remote possibility of a cure off the table. She's now dancing the palliative chemo dance, which can go on for a long time with fairly decent quality of life, but will eventually come to a close.
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threeoutside
User: threeoutside
Date: 2011-04-18 23:16 (UTC)
Subject: (no subject)
Hugs, friend. And hope!
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User: joycemocha
Date: 2011-04-18 23:18 (UTC)
Subject: (no subject)
Oh crap. I am so sorry, Jay.

I will not be able to attend Jaycon, but perhaps I can buy you lunch someday soon. Or dinner.
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cathshaffer
User: cathshaffer
Date: 2011-04-18 23:18 (UTC)
Subject: (no subject)
Jay--Given your experience with your last liver resection, if I were you I would need them to give me a very good reason why they can't do a biopsy to confirm the metastasis before they put you through all of this. Blood biomarkers are very not-ready-for-prime time for most cancers--there are very few I would trust with my *second* liver resection. (They can't keep doing this indefinitely.)

It is also not true that you have to have exhausted every chemo regimen before you can enroll in a clinical trial. And, IIRC, you had FOLFIRI and FOLFOX one time each, so if your new tumor is a recurrence of the cancer, you *have* failed them both. (The idea that the tumor was already there and responded to FOLFOX is a nice theory, but I'm not sure I'd buy it.)
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Jay Lake
User: jaylake
Date: 2011-04-18 23:26 (UTC)
Subject: (no subject)
Nope, no FOLFIRI yet. And we're doing the PET Wednesday to confirm the tumor.
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Paul Haines
User: paulhaines
Date: 2011-04-18 23:24 (UTC)
Subject: (no subject)
Sorry to hear that, Jay. Any chance they can lop that lobe off? In my experience, surgery was more effective (and more pleasant long term) than chemo.
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Jay Lake
User: jaylake
Date: 2011-04-19 12:54 (UTC)
Subject: (no subject)
Oh, the lobe is coming off in July. They just want to run some chemo first.
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Brent "Chip" Edwards: fuck!
User: chipuni
Date: 2011-04-18 23:24 (UTC)
Subject: (no subject)
Keyword:fuck!


Thank you for posting about your cancer.

I'm glad that the FOLFOX course may have been effective, and I hope that FOLFIRI is also effective.
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zellandyne
User: zellandyne
Date: 2011-04-18 23:26 (UTC)
Subject: (no subject)
We'll be at Jaycon. *hugs*
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Jay Lake
User: jaylake
Date: 2011-04-19 12:54 (UTC)
Subject: (no subject)
It will be good to see you.
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