[cancer] Field notes from Cancerland, post-operative edition
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 Kalimpura [ Powells | 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.
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 Kalimpura [ Powells | 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.