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[cancer] Field notes from Cancerland, post-operative edition - Lakeshore — LiveJournal
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Jay Lake
Date: 2013-01-28 08:20
Subject: [cancer] Field notes from Cancerland, post-operative edition
Security: Public
Tags:awards, books, cancer, family, friends, health, kalimpura, personal, stories
Next Steps

Yes, I am home and in reasonably good order. Today I'll be scheduling post-operative followups with both my surgical oncologist and my medical oncologist. The unexpected discovery of new tumors in my thoracic diaphragm and my lesser omentum have significantly complicated the planned course of post-operative treatment. Plus at some point they have take these thirty-two staples out of my belly. I'll comment more on the post-operative issues when I've had more time to think, and when additional data becomes available.

Genetic Sequencing of My Tumor Tissue

The samples went off to the testing lab. Thank you again to everyone who contributed to the Acts of Whimsy fundraiser to make this possible. Thanks to the unexpected findings in surgery, things are probably going to get even more expensive than anticipated, so the overage will go to very good use. Meanwhile, we expect the lab report back around February 10th or so. Now working on getting the interpretation lined up.

Why the Surgery Went the Way It Did

As I said yesterday, My surgical oncologist's initial comment to me on that was, "What we're supposed to do when we open you up and find unexpected tumors is just close you back up. I knew that wasn't the right answer for you." Several folks wondered about that. Here's what I understand: I think it's because the assumption is that if there's additional undetected metastasis which wasn't accounted for in the surgical plan, disturbing those met tumors without sufficient knowledge of their extent could cause more harm than good. Anyone reading here who's a clinician is invited to correct or expand upon that in comments.

My Own State of Mind

I got nothing. Last Tuesday I went under anesthesia thinking I had three liver tumors and probably a fourth. I came out of anesthesia to be told I had additional tumors in two other sites within my body. All were excised or ablated. I am baffled, unhappy, terrified, hopeful, loved and beloved, afraid, confused and a whole lot of other things, all at once. I have barely begun to sort out my feelings, and we are a ways from having a decent go-forward plan. Everyone around me is working very hard to help me, and each other, cope with this, as we seek to understand.

Why This is So Confusing

Bluntly, I've lived too long. Most people in my cancer cohort are either cured or dead after five years. At four years and ten months of living with Stage IV metastatic colon cancer, I am neither. My disease progression has almost outlived the available clinical data and best practices. This means it's not clear either what to expect next or what to do about it. This also means we're pinning a lot of hope on the genomic sequencing of my tumor tissues. Maybe there are answers yet. In the mean time, I continue to be a walking, talking science experiment. Which at least has its own cool factor, because SCIENCE!

Good Things That Have Happened

While I've been so incapacitated this past week, my author copies of KalimpuraPowells | BN ] showed up. The book is officially released this coming Thursday. I also learned that my short story "The Cancer Catechism" has made the preliminary ballot for the Stoker Awards. I think that's a first for me. And the Cthulhu short I wrote right before surgery has been accepted by the requesting market with only minor editorial changes requested. So, go me!

Meanwhile, I am off work all week laying low and recuperating at home. Be well, and I shall essay to do the same.

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User: stfg
Date: 2013-01-28 20:37 (UTC)
Subject: (no subject)
"What we're supposed to do when we open you up and find unexpected tumors is just close you back up. I knew that wasn't the right answer for you."

I'm a family physician, not an oncologist, but my understanding of that quote is that patients with extensive metasteses have a poor prognosis and there's no sense causing the pain and scarring from additional surgery if it is not going to help in the long run. My feeling is that there are probably two reason your surgeon decided to resect the tumors anyway. The first is that you did not have tumors throughout your belly, but only in areas close to your liver tumors, which makes it more likely he would get it all.

The second reason is that you are actively pursuing additional treatment through genetic sequencing. Closing up your belly without getting all the cancer out is basically saying 'we've done all we can do and maybe you should consider enrolling in hospice and stop pursuing aggressive treatments that will do more harm than good at this point.' Your surgeon clearly has talked enough to you to know that you are not ready to go down that road yet. I think he wants you to be able to at least try and see if the genetic sequencing is helpful, and gave you a little extra time to figure that out.
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Jay Lake
User: jaylake
Date: 2013-01-28 20:39 (UTC)
Subject: (no subject)
Thank you. This makes sense to me.
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User: martianmooncrab
Date: 2013-01-28 21:00 (UTC)
Subject: (no subject)
you are the new statisic.. be the paradigm change in it all..

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