Post-op update
Dec. 29th, 2015 11:32 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
randy_byersIt's been quite a while since my last health update, and a hell of a lot has happened since then. Some of it has been wonderful, and some of it has been terrible. I hope nobody took the long silence as a sign that the surgery went badly. That part actually went wonderfully well.
When I last posted, I was still unsure whether I'd choose to have the tumor removed or just have a biopsy. Eventually I chose the former, and the surgery happened on December 10th. The neurosurgeon, Dr. Silbergeld, had assured me before the surgery that his top priority was to do as little damage to me as possible. His assistant, Courtney, told me that if I was going to have a brain tumor, the location of mine in the right frontal lobe was just about ideal for me. It meant that there was little chance of major disability, since I'm right-handed, right-footed, right-eyed, etc, and all of that is controlled from the left lobe. It also meant the danger to my language facility was quite low, since that's also in the left lobe. All of this meant that my worst fears going into the surgery were largely allayed.
The surgery lasted something like five hours. They took out tumor tissue amounting to something like two golfballs worth. Dr. Silbergeld told me he had gotten as much of it as possible, although he had also told me before the surgery that because brain tumors are diffused into the brain tissue there was no way he could remove all the tumor cells surgically. Still, he felt he had gotten as much of it as anyone possibly could.
When I woke up in recovery, I immediately felt that I was still myself, with my sense of humor intact. I was able to crack people up right away, and that felt great. It took them a while to find an open bed for me in ICU, but that's where I spent the night. I liked all the ICU nurses a lot, and they seemed to like me too. One of them, who debriefed the second shift on my situation, even called me a sweetheart. The poor woman who shared my room was not so lucky. She had been there for over two months with a septic infection following hernia surgery. She couldn't speak, because she'd had a tracheotomy, and it appeared she often couldn't even tell if she was breathing, as the nurses frequently reassured her, "You *are* breathing. Breathe more slowly." It seemed as though every hour she called them because she had wet herself, and they had to change the the sheets and clean her. Then she would complain that she was cold. She seemed to be having an absolutely miserable time, and I felt very bad for her.
Meanwhile I was having adventures with my beloved nurses, who had to transport me to a post-op MRI and got lost along the way. This time I asked for rock instead of classical when they asked if I wanted music to mask the noises of the mahcine. They asked which decade, and I said the '70s. I then told the nurses that I was reliving my teen years during the MRI, except there had been a decided lack of prog rock. The one nurse was so young she had no idea what I was talking about, just as she hadn't understood my earlier reference to slamdancing when I was joking about brain damage. "I'm really dating myself," she confessed with some embarrassment. The older nurse could connect the slamdancing reference to the Seattle grunge scene, and wanted to know if I'd been part of it. Fortunately I didn't launch into the creaky old story about seeing Nirvana open for the Butthole Surfers on Halloween 1988.
The plan going into the surgery was one night in ICU and then another night in the general ward, and the next day a gang of internists confirmed that that was still the idea. However, when Dr. Silbergeld checked in, he said, "You're going home now, unless you ask to stay." I think part of what happened is that he had met my family (my mother, sister, brother, and sister-in-law were all there) and knew that they could take care of me just fine. So I went home a day after having part of my brain removed, and it went without a hitch. I needed a walker for the first couple of days, and had a tendency to drift to the left, which indicated some of the leftside weakness they had told me might result from mucking around in the right lobe, but that all went away pretty rapidly.
The major thing I had in my favor for a quick recovery was that I was in pretty good shape going into the surgery. Ironically (if that's the right word), the reason I was in pretty good shape was two other health problems I'd had in recent years: first, the diagnosis that I was pre-diabetic, which drove me to change my diet and to work at increasing my cardio, mostly through taking long urban hikes. Then I got rotator cuff tendinitis in my right shoulder, which required physical therapy exercises to strengthen the muscles in my upper body. It's quite possible that, aside from the usual loss of muscle mass due to aging, I'm in the best shape I've been in since I was in my 20s and was strong and resilient simply because I was young. Dr. Silbergeld said I was the healthiest patient he was currently treating.
Let's hope that this also helps me with the next phase of my health crisis, because the bad news that resulted from the surgery is that the tumor was found to be malignant, not benign. The official diagnosis says it's a "mitotically active astroycytoma with microvascular proliferation, and geographic and pseudopalisading necrosis, warranting glioblastoma WHO grade IV designation." I don't understand what all of that means, but the grade IV designation means it's the most aggressive form of glioblastoma in their rating system. They told me that the average survival time for a person with this type of tumor is twelve months, but of course that's on a bell curve with both longer and shorter possible outcomes. They told us (my sister and mother were both there too) of one patient who survived 22 years and died of a heart attack, not cancer, but obviously I could die much more quickly than even 12 months too. They said point blank that this cancer was very likely to shorten my life.
The next step, however, is a simultaneous double-pronged treatment of radiation therapy and chemotherapy. That lasts for six weeks, then I take four weeks off to let my immune system recover, then they will continue giving me chemo alone after that. One of the treatment options they mentioned, if the tumor comes back, is something called the Optune, which is an electromagnetic device you wear on your head for eighteen hours a day that attempts to interfere with the mitosis of the cancer cells. One of the oncologists we talked to seemed pretty enthusiastic about that one. I might also qualify for a clinical trial of a process that removes blood cells while I'm taking chemo, does something to reinforce them, and then reintroduces them into my system. Since they couldn't tell me if I qualified for the trial until they got further test results back, I asked them not to burden me with more information until we knew for sure, so I'm unclear on what this process does exactly or whether I would want to participate in the trial.
Needless, to say, the diagnosis was a very unhappy one for me and those who love me. My life has been completely turned on its head (ho ho ho) in less than a month, and I'm not sure how much I've really digested these developments. What I do know is that I've received an unbelievable outpouring of love and support from friends and family, to the extent that I'm now experiencing a kind of oceanic feeling of calm, as though a whole global village of people is watching out for me. It has been completely eye-opening, and it also helped to read Atul Gawande's wonderful book, Being Mortal, which was a gift from my old friend,![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
ron_drummond, and which talks about what people value in life, especially at the end of their lives. I may be fooling myself, but as of today I feel a lot less scared of dying than I did two or three weeks ago. But I also hope that I'll beat the average survival rate, maybe even by a good, long margin. We shall see. I get fitted for a radiation mask tomorrow, and the treatments start the following week. I'm not looking forward to the radiation, which I'm told will certainly wear me down, although apparently chemo is not so horrible as it used to be. One step at a time, and with people around me who somehow, miraculously, care deeply what happens to me. I'm just sorry it took this existential crisis for me to realize what a lucky guy I am to have so many wonderful people in my life. Live and learn, eh? Let's hope there's plenty more learning to come.
When I last posted, I was still unsure whether I'd choose to have the tumor removed or just have a biopsy. Eventually I chose the former, and the surgery happened on December 10th. The neurosurgeon, Dr. Silbergeld, had assured me before the surgery that his top priority was to do as little damage to me as possible. His assistant, Courtney, told me that if I was going to have a brain tumor, the location of mine in the right frontal lobe was just about ideal for me. It meant that there was little chance of major disability, since I'm right-handed, right-footed, right-eyed, etc, and all of that is controlled from the left lobe. It also meant the danger to my language facility was quite low, since that's also in the left lobe. All of this meant that my worst fears going into the surgery were largely allayed.
The surgery lasted something like five hours. They took out tumor tissue amounting to something like two golfballs worth. Dr. Silbergeld told me he had gotten as much of it as possible, although he had also told me before the surgery that because brain tumors are diffused into the brain tissue there was no way he could remove all the tumor cells surgically. Still, he felt he had gotten as much of it as anyone possibly could.
When I woke up in recovery, I immediately felt that I was still myself, with my sense of humor intact. I was able to crack people up right away, and that felt great. It took them a while to find an open bed for me in ICU, but that's where I spent the night. I liked all the ICU nurses a lot, and they seemed to like me too. One of them, who debriefed the second shift on my situation, even called me a sweetheart. The poor woman who shared my room was not so lucky. She had been there for over two months with a septic infection following hernia surgery. She couldn't speak, because she'd had a tracheotomy, and it appeared she often couldn't even tell if she was breathing, as the nurses frequently reassured her, "You *are* breathing. Breathe more slowly." It seemed as though every hour she called them because she had wet herself, and they had to change the the sheets and clean her. Then she would complain that she was cold. She seemed to be having an absolutely miserable time, and I felt very bad for her.
Meanwhile I was having adventures with my beloved nurses, who had to transport me to a post-op MRI and got lost along the way. This time I asked for rock instead of classical when they asked if I wanted music to mask the noises of the mahcine. They asked which decade, and I said the '70s. I then told the nurses that I was reliving my teen years during the MRI, except there had been a decided lack of prog rock. The one nurse was so young she had no idea what I was talking about, just as she hadn't understood my earlier reference to slamdancing when I was joking about brain damage. "I'm really dating myself," she confessed with some embarrassment. The older nurse could connect the slamdancing reference to the Seattle grunge scene, and wanted to know if I'd been part of it. Fortunately I didn't launch into the creaky old story about seeing Nirvana open for the Butthole Surfers on Halloween 1988.
The plan going into the surgery was one night in ICU and then another night in the general ward, and the next day a gang of internists confirmed that that was still the idea. However, when Dr. Silbergeld checked in, he said, "You're going home now, unless you ask to stay." I think part of what happened is that he had met my family (my mother, sister, brother, and sister-in-law were all there) and knew that they could take care of me just fine. So I went home a day after having part of my brain removed, and it went without a hitch. I needed a walker for the first couple of days, and had a tendency to drift to the left, which indicated some of the leftside weakness they had told me might result from mucking around in the right lobe, but that all went away pretty rapidly.
The major thing I had in my favor for a quick recovery was that I was in pretty good shape going into the surgery. Ironically (if that's the right word), the reason I was in pretty good shape was two other health problems I'd had in recent years: first, the diagnosis that I was pre-diabetic, which drove me to change my diet and to work at increasing my cardio, mostly through taking long urban hikes. Then I got rotator cuff tendinitis in my right shoulder, which required physical therapy exercises to strengthen the muscles in my upper body. It's quite possible that, aside from the usual loss of muscle mass due to aging, I'm in the best shape I've been in since I was in my 20s and was strong and resilient simply because I was young. Dr. Silbergeld said I was the healthiest patient he was currently treating.
Let's hope that this also helps me with the next phase of my health crisis, because the bad news that resulted from the surgery is that the tumor was found to be malignant, not benign. The official diagnosis says it's a "mitotically active astroycytoma with microvascular proliferation, and geographic and pseudopalisading necrosis, warranting glioblastoma WHO grade IV designation." I don't understand what all of that means, but the grade IV designation means it's the most aggressive form of glioblastoma in their rating system. They told me that the average survival time for a person with this type of tumor is twelve months, but of course that's on a bell curve with both longer and shorter possible outcomes. They told us (my sister and mother were both there too) of one patient who survived 22 years and died of a heart attack, not cancer, but obviously I could die much more quickly than even 12 months too. They said point blank that this cancer was very likely to shorten my life.
The next step, however, is a simultaneous double-pronged treatment of radiation therapy and chemotherapy. That lasts for six weeks, then I take four weeks off to let my immune system recover, then they will continue giving me chemo alone after that. One of the treatment options they mentioned, if the tumor comes back, is something called the Optune, which is an electromagnetic device you wear on your head for eighteen hours a day that attempts to interfere with the mitosis of the cancer cells. One of the oncologists we talked to seemed pretty enthusiastic about that one. I might also qualify for a clinical trial of a process that removes blood cells while I'm taking chemo, does something to reinforce them, and then reintroduces them into my system. Since they couldn't tell me if I qualified for the trial until they got further test results back, I asked them not to burden me with more information until we knew for sure, so I'm unclear on what this process does exactly or whether I would want to participate in the trial.
Needless, to say, the diagnosis was a very unhappy one for me and those who love me. My life has been completely turned on its head (ho ho ho) in less than a month, and I'm not sure how much I've really digested these developments. What I do know is that I've received an unbelievable outpouring of love and support from friends and family, to the extent that I'm now experiencing a kind of oceanic feeling of calm, as though a whole global village of people is watching out for me. It has been completely eye-opening, and it also helped to read Atul Gawande's wonderful book, Being Mortal, which was a gift from my old friend,
ron_drummond, and which talks about what people value in life, especially at the end of their lives. I may be fooling myself, but as of today I feel a lot less scared of dying than I did two or three weeks ago. But I also hope that I'll beat the average survival rate, maybe even by a good, long margin. We shall see. I get fitted for a radiation mask tomorrow, and the treatments start the following week. I'm not looking forward to the radiation, which I'm told will certainly wear me down, although apparently chemo is not so horrible as it used to be. One step at a time, and with people around me who somehow, miraculously, care deeply what happens to me. I'm just sorry it took this existential crisis for me to realize what a lucky guy I am to have so many wonderful people in my life. Live and learn, eh? Let's hope there's plenty more learning to come.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2015-12-29 09:50 pm (UTC)no subject
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Date: 2015-12-30 03:22 am (UTC)Now, trivia to distract you!
As someone too old to believe in slamdancing (when Soren first described it to me, I wasn't sure whether to believe him), I chortle deeply at discovering there are now adults too young to have heard of it. As for prog rock, I have always taken for granted that that's an elite taste; if anybody has actually heard of any of its leading bands, I am surprised.
The bell curve is so named for its shape on a graph, not for anybody named Bell. (Although I understand that Alexander Graham Bell had another curve of his own.)
I'd never heard of the Optune. Sounds wild: if you get one, I look forward to reading about it.
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Date: 2015-12-30 03:44 am (UTC)Actually the next step is two treatments at the same time. They emphasized over and over that combining the radiation and chemo has better results than either treatment applied singly.
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Date: 2015-12-30 04:27 am (UTC)2) So I have often heard. It's good to hear this is the plan for you. Onward into biochemistry!
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Date: 2015-12-30 03:13 pm (UTC)And whether I get three more months or three more years out of all this, I just hope I can find a way to enjoy myself a little in whatever time I have left. Another important takeaway from Gawande's book was to see how various people have found different ways to do that under difficult or even disastrous conditions. Hash brownies might help!
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