In Which .... SHIT
Nov. 9th, 2019 02:43 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
shannon_aKimberly has cancer.
I mean, Morgan, the NP, stepped back after talking about "invasive cancer" for a while, and said that they needed to see the pathology to confirm, but she didn't seem to have any doubt. It had infiltrated the walls of Kimberly's colon deep enough that they couldn't get it all, and also spread to the small intestine. That's cancer.
Honestly, this shouldn't have been a surprise. Kimberly's GI doctor seemed to think the odds were about 50/50 after seeing what the previous colonoscopy looked like. And then her surgeon started asking questions about whether members of her family might suffer from Lynch Syndrome, which is "hereditary non-polyposis colorectal cancer", and makes it more likely that you suffer masses in your colon earlier, and more likely that they develop more quickly into cancer. And it sounded like that answer was probably yes, that she likely has Lynch Syndrome in her genetics, which dropped the odds from 50/50.
So we were probably down to Trump-wins-the-2016-election for the odds that the mass wasn't cancerous. But we still hoped and believed in the best. I mean, Trump won, didn't he? (Though that certainly wasn't for the best.)
We knew the odds, intellectually, but we humans are really bad with odds, viscerally.
It's hard to know how to even react to news like this. I've been mostly numb since yesterday. Paging my way through books, mostly reading, but skimming more than I'd like. Sometimes just staring. Feeling empty, yet congested in my head. And overwhelmed, totally overwhelmed. Like I just can't conceive of getting everything done that needs doing. Kimberly has talked about anxiety leaving her paralyzed, and I can understand. And I also feel like I do when I haven't had enough sleep, and the least new input would just send me into tears.
And it's hard to even talk about how I'm feeling, because Kimberly's the one with the cancer. She's the one that needs support. Or the most support. My emotions or feelings are frankly secondary. But still there. And I'm certainly needing support too at this point.
So yesterday Jay drove us out to the CPMC campus in San Francisco. That's California Pacific Medical Center, and it was one of the nicest, friendliest, cleanest, and more comfortable hospitals that I've been to.
It's Sutter Health's flagship hospital, and though it's in the Tenderloin, which we saw while driving in, traveling from the hospital parking garage up to the Ambulatory Care Unit and back was all entirely nice.
We got there about 30 minutes early, and pretty promptly at Kimberly's appointment time a "candy striper" (a young volunteer, though he was male, unlike traditional stripers) came to get Kimberly. He also indicated that I should go with her, which surprised me. Kimberly often asks me to go with her into appointments, when she's feeling like she needs help, and the doctors are always entirely open about that, but I'd never had anyone proactively say I should come with. And I soon learned that I'd stay with Kimberly until they finished her prep, and I'd get to meet her doctors and nurses.
Which was such a world of difference from the competent but often impersonal and occasionally antagonistic hospitals here in the East Bay.
After the candy striper we met a couple of different nurses, who collected information from Kimberly, helped get her belongings together, and talked to us about the procedure and whether we'd be able to talk to doctors afterward.
Here was the bit of weirdness of the day (one which we knew about in advance): there was some type of conference going on, and so they were live-streaming some of these procedures over to the conference. Kimberly filled out forms giving them the OK; she was told twice that "her colon would be famous". (And we were told that this would make it harder to see the doctor, though an NP named "Morgan" would be doing her best to coordinate all of the information, so that she could talk to Kimberly about it.)
The reason for all this conferencing and such is the surgical procedure that Kimberly had is quite cutting edge. It allows for the resection of large masses in the colon through a colonoscope, without the need for more invasive surgery. So, as long as a tumor hasn't grown too far into the walls of the colon, it can be utterly removed as an out-patient procedure. Apparently, people come from all over the country from this procedure; we were obviously quite lucky that it was practically in our backyard (and that we were still in the Bay Area, not Hawaii).
So after many forms were filled out and many permissions given, Kimberly and I were left to our devices as we waited for the 2.45 surgery.
I read to her a bit from The Nonborn King, where we're still in the dull but useful summary of past books. We watched the time tick by. 2.45 slipped past. Kimberly, who'd gotten up around 4.30 from stress and/or distress over her prep, decided to sleep. I turned to one of my own books to read, then when I decided that Kimberly was mostly sleeping, I started in on some work I'd lain in for while I was at a hospital. A few paragraphs into that, and Kimberly woke and went to the bathroom. I then did the same. (Well, not the waking up.) By now it was 3.30 or so, and the entire corridor we were in was otherwise deserted, with the only sign of human life being a TV that had been left on, broadcasting the news to an empty room.
I messaged Jay, still out in the waiting area, just to let him know we were still waiting for the surgery to start.
I think we were a bit past an hour late when someone finally showed up, and suddenly we were on the move again. Off to a prep room. Nurses started to file in. Various people would stick their head in to see what was going on. One of the TVs in that room showed the current livestream, where a scope moving through a colon looked like the time tunnel from Tom Baker's early Doctor Who years. People were talking in the corridor. One nurse questioned whether another doctor was live, and finally decided that he wasn't, and that he could slip in to ask him a question.
A shaggy haired doctor finally showed up and introduced himself as the inventor of the procedure. He said that the doctor who was supposed to do Kimberly's procedure was still on another one, and that he'd do it instead. He was arrogant, saying how he was going to solve Kimberly's problem, no ifs, ands, or buts. And he was so proudly talking about his creative innovation. (I wonder if the change in surgeon meant that Kimberly's colon was not famous.)
But, I was thrilled to have him. I felt like we were at the place that was best able to take care of Kimberly's problem, via the least invasive means possible, and that we had the doctor who was most likely to be successful.
Though it didn't turn out that way, I feel like we absolutely did the best we could here, and that feels good, because it's a rare triumph in today's entirely fucked up healthcare world of forced compromises of all sorts.
Eventually, the nurse who had been avidly watching the time-tunnel livestream walked over to me and said that he could escort me out to the waiting room, as Kimberly was going to be brought into the procedure room.
And so I bid my wife goodbye, and exited, about three hours after I'd entered the bowels (the bowel bowels?) of the hospital.
Jay was outside, working on some electronic device. He said he'd managed to get some work done. He'd apparently visited the big board of patient info a few times while we were gone, and kept seeing that it said that Kimberly was still in pre-op, and had even begun to wonder if it just updated slowly. Nope, there was just lots going on back there.
I found some food downstairs, came back up and talked to Jay for a while. Two hours slipped by. I was feeling increasingly good about the possible results of the surgery, because two hours meant that they were actually removing the tumor — that they hadn't gotten in there and decided that they couldn't manage it. And I *thought* it meant that they hadn't gotten in there and found that it had infiltrated the wall of Kimberly's colon, because the previous surgeon had indicated that they wouldn't operate in that situation.
So, about two hours in, I pulled out my laptop, and figured I could get some more work in. Because that waiting room was super comfortable. There were very nice seats everywhere and even some desks for working.
But then Jay went up to the board one more time, came back, and said that Kimberly was in post-op.
And a nurse came out a few minutes later to get me.
And then we got the news.
They had pulled as much of the tumor out as they could. But it was deep in the colon's wall. And it was in the small intestine. And it all looked obviously abnormal.
So.
They're going to need to do surgery to take a big chunk of the colon out, and it's going to be a somewhat worse surgery than we expected, because they're going to have to take out where the large intestine and small intestine meet.
And it's cancer. They need the pathology, but no one seems to doubt, it's cancer.
Kimberly was feeling poorly after the surgery, and Morgan our NP was extremely concerned. She was very careful in what she said, but I've never seen a doctor with such a poor Poker face.
I thought for a bit that Kimberly was going to get admitted, because she was feeling so sick right after she woke up. I think Morgan did too.
But, the crisis passed. That particular crisis. And Morgan said that Kimberly could be released. And it all went off at 100x the speed of the Alta Bates ER that we have a mile from our house.
So ... onward.
Kimberly has to recover from this less-invasive surgery, and then she's got the big colectomy scheduled for the start of December.
And just like this one, we'll hope that is the end, but perhaps the odds will be more with us then ...
Since we got home last night, our DSL has been mostly out. It's actually been flaky for a few days, but they had some other local problems, so I assumed that was it. Nope, and it's been much worse today, so I called Sonic. They say it's good 'ole PacBell's problem, and they'll fix it on their own on Monday. We'll see.
But not being able to stream, and barely being able to access the net, and not even being able to HotSpot our phones because our reception is so bad in the house ... it just seems like insult added to injury.
Small problems in the scope of things. But they add up.
I mean, Morgan, the NP, stepped back after talking about "invasive cancer" for a while, and said that they needed to see the pathology to confirm, but she didn't seem to have any doubt. It had infiltrated the walls of Kimberly's colon deep enough that they couldn't get it all, and also spread to the small intestine. That's cancer.
Honestly, this shouldn't have been a surprise. Kimberly's GI doctor seemed to think the odds were about 50/50 after seeing what the previous colonoscopy looked like. And then her surgeon started asking questions about whether members of her family might suffer from Lynch Syndrome, which is "hereditary non-polyposis colorectal cancer", and makes it more likely that you suffer masses in your colon earlier, and more likely that they develop more quickly into cancer. And it sounded like that answer was probably yes, that she likely has Lynch Syndrome in her genetics, which dropped the odds from 50/50.
So we were probably down to Trump-wins-the-2016-election for the odds that the mass wasn't cancerous. But we still hoped and believed in the best. I mean, Trump won, didn't he? (Though that certainly wasn't for the best.)
We knew the odds, intellectually, but we humans are really bad with odds, viscerally.
It's hard to know how to even react to news like this. I've been mostly numb since yesterday. Paging my way through books, mostly reading, but skimming more than I'd like. Sometimes just staring. Feeling empty, yet congested in my head. And overwhelmed, totally overwhelmed. Like I just can't conceive of getting everything done that needs doing. Kimberly has talked about anxiety leaving her paralyzed, and I can understand. And I also feel like I do when I haven't had enough sleep, and the least new input would just send me into tears.
And it's hard to even talk about how I'm feeling, because Kimberly's the one with the cancer. She's the one that needs support. Or the most support. My emotions or feelings are frankly secondary. But still there. And I'm certainly needing support too at this point.
So yesterday Jay drove us out to the CPMC campus in San Francisco. That's California Pacific Medical Center, and it was one of the nicest, friendliest, cleanest, and more comfortable hospitals that I've been to.
It's Sutter Health's flagship hospital, and though it's in the Tenderloin, which we saw while driving in, traveling from the hospital parking garage up to the Ambulatory Care Unit and back was all entirely nice.
We got there about 30 minutes early, and pretty promptly at Kimberly's appointment time a "candy striper" (a young volunteer, though he was male, unlike traditional stripers) came to get Kimberly. He also indicated that I should go with her, which surprised me. Kimberly often asks me to go with her into appointments, when she's feeling like she needs help, and the doctors are always entirely open about that, but I'd never had anyone proactively say I should come with. And I soon learned that I'd stay with Kimberly until they finished her prep, and I'd get to meet her doctors and nurses.
Which was such a world of difference from the competent but often impersonal and occasionally antagonistic hospitals here in the East Bay.
After the candy striper we met a couple of different nurses, who collected information from Kimberly, helped get her belongings together, and talked to us about the procedure and whether we'd be able to talk to doctors afterward.
Here was the bit of weirdness of the day (one which we knew about in advance): there was some type of conference going on, and so they were live-streaming some of these procedures over to the conference. Kimberly filled out forms giving them the OK; she was told twice that "her colon would be famous". (And we were told that this would make it harder to see the doctor, though an NP named "Morgan" would be doing her best to coordinate all of the information, so that she could talk to Kimberly about it.)
The reason for all this conferencing and such is the surgical procedure that Kimberly had is quite cutting edge. It allows for the resection of large masses in the colon through a colonoscope, without the need for more invasive surgery. So, as long as a tumor hasn't grown too far into the walls of the colon, it can be utterly removed as an out-patient procedure. Apparently, people come from all over the country from this procedure; we were obviously quite lucky that it was practically in our backyard (and that we were still in the Bay Area, not Hawaii).
So after many forms were filled out and many permissions given, Kimberly and I were left to our devices as we waited for the 2.45 surgery.
I read to her a bit from The Nonborn King, where we're still in the dull but useful summary of past books. We watched the time tick by. 2.45 slipped past. Kimberly, who'd gotten up around 4.30 from stress and/or distress over her prep, decided to sleep. I turned to one of my own books to read, then when I decided that Kimberly was mostly sleeping, I started in on some work I'd lain in for while I was at a hospital. A few paragraphs into that, and Kimberly woke and went to the bathroom. I then did the same. (Well, not the waking up.) By now it was 3.30 or so, and the entire corridor we were in was otherwise deserted, with the only sign of human life being a TV that had been left on, broadcasting the news to an empty room.
I messaged Jay, still out in the waiting area, just to let him know we were still waiting for the surgery to start.
I think we were a bit past an hour late when someone finally showed up, and suddenly we were on the move again. Off to a prep room. Nurses started to file in. Various people would stick their head in to see what was going on. One of the TVs in that room showed the current livestream, where a scope moving through a colon looked like the time tunnel from Tom Baker's early Doctor Who years. People were talking in the corridor. One nurse questioned whether another doctor was live, and finally decided that he wasn't, and that he could slip in to ask him a question.
A shaggy haired doctor finally showed up and introduced himself as the inventor of the procedure. He said that the doctor who was supposed to do Kimberly's procedure was still on another one, and that he'd do it instead. He was arrogant, saying how he was going to solve Kimberly's problem, no ifs, ands, or buts. And he was so proudly talking about his creative innovation. (I wonder if the change in surgeon meant that Kimberly's colon was not famous.)
But, I was thrilled to have him. I felt like we were at the place that was best able to take care of Kimberly's problem, via the least invasive means possible, and that we had the doctor who was most likely to be successful.
Though it didn't turn out that way, I feel like we absolutely did the best we could here, and that feels good, because it's a rare triumph in today's entirely fucked up healthcare world of forced compromises of all sorts.
Eventually, the nurse who had been avidly watching the time-tunnel livestream walked over to me and said that he could escort me out to the waiting room, as Kimberly was going to be brought into the procedure room.
And so I bid my wife goodbye, and exited, about three hours after I'd entered the bowels (the bowel bowels?) of the hospital.
Jay was outside, working on some electronic device. He said he'd managed to get some work done. He'd apparently visited the big board of patient info a few times while we were gone, and kept seeing that it said that Kimberly was still in pre-op, and had even begun to wonder if it just updated slowly. Nope, there was just lots going on back there.
I found some food downstairs, came back up and talked to Jay for a while. Two hours slipped by. I was feeling increasingly good about the possible results of the surgery, because two hours meant that they were actually removing the tumor — that they hadn't gotten in there and decided that they couldn't manage it. And I *thought* it meant that they hadn't gotten in there and found that it had infiltrated the wall of Kimberly's colon, because the previous surgeon had indicated that they wouldn't operate in that situation.
So, about two hours in, I pulled out my laptop, and figured I could get some more work in. Because that waiting room was super comfortable. There were very nice seats everywhere and even some desks for working.
But then Jay went up to the board one more time, came back, and said that Kimberly was in post-op.
And a nurse came out a few minutes later to get me.
And then we got the news.
They had pulled as much of the tumor out as they could. But it was deep in the colon's wall. And it was in the small intestine. And it all looked obviously abnormal.
So.
They're going to need to do surgery to take a big chunk of the colon out, and it's going to be a somewhat worse surgery than we expected, because they're going to have to take out where the large intestine and small intestine meet.
And it's cancer. They need the pathology, but no one seems to doubt, it's cancer.
Kimberly was feeling poorly after the surgery, and Morgan our NP was extremely concerned. She was very careful in what she said, but I've never seen a doctor with such a poor Poker face.
I thought for a bit that Kimberly was going to get admitted, because she was feeling so sick right after she woke up. I think Morgan did too.
But, the crisis passed. That particular crisis. And Morgan said that Kimberly could be released. And it all went off at 100x the speed of the Alta Bates ER that we have a mile from our house.
So ... onward.
Kimberly has to recover from this less-invasive surgery, and then she's got the big colectomy scheduled for the start of December.
And just like this one, we'll hope that is the end, but perhaps the odds will be more with us then ...
Since we got home last night, our DSL has been mostly out. It's actually been flaky for a few days, but they had some other local problems, so I assumed that was it. Nope, and it's been much worse today, so I called Sonic. They say it's good 'ole PacBell's problem, and they'll fix it on their own on Monday. We'll see.
But not being able to stream, and barely being able to access the net, and not even being able to HotSpot our phones because our reception is so bad in the house ... it just seems like insult added to injury.
Small problems in the scope of things. But they add up.
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Date: 2019-11-11 04:49 pm (UTC)