After speaking to another Doctor out in Tucson, who generously went over my case with another oncologist who handed me the same opinion I had been handed twice already, (though he was decidedly more optimistic than my other doctors had been), I decided to have the radiation. He left me with this: "You should feel good--you've done your due diligence." I laughed, because I didn't feel good at all. After we hung up, that phrase kept repeating, due diligence, due diligence. That was all I could do. It felt pathetic.
I spent the week depressed, and ultimately, resigned- I called and scheduled my appointment for radiation therapy. Preparations: a ct scan to make the mask, (I don't have the details of this, but I'll get them) and an MRI. This is happening Thursday morning. I do not know when the actual radiating begins.
I have decided to start taking anti depressants, because I feel I've been mired in something for some time. It's been ten days of that, and I'm feeling better already. I am writing a lot, and reading a lot, and composing some music. I feel engaged, still, and not totally lost in tumor world, in short. I feel more optimistic. I am trying to be realistic about my situation, about my health. But the focus--last week it was on the fear, the negatives--and I am still,now, very much afraid--yet I am beginning to feel much more positive. I can let go, for a while, of my worries about dying, or of further brain damage. It has been important for me to deal with these anxieties head on, accept them as they are, and not wish them away. I'm sure they will come back--they are more probable to return than the tumor is.
I am resting a bit easier with my "due diligence."
Side bit: I was just back in NY for thanksgiving. My youngest brother, James, had asked if he could come out and visit me, as we'd been talking about for some time, but having the plans consistently pushed off by the tumor.
"Well," I said. "I have to have radiation treatment. I might not be feeling too well for a while." I've been laughing at that phrase, "radiation treatment." Shock treatment. The imbalance of these words, stuck together,improbable and ghastly yet absurdly commonplace.
"Radiation?" he said. "What's that?"
Maybe I should not have said anything, but I always err on the side of being too honest, with James at least, because I know, too well, the pain of being lied to as a child. I don't want to lie to him, but I've been careful not to upset him either. I don't want to spoil his innocence with adult worries. He has too many of those for an eleven-year-old. I continue,"Well, they take a machine and shoot radiation at--"
"They shoot you?" he said, a little panicked. Bad word.
"No, no, they won't shoot me. Aim," I said. "They aim it at me--it doesn't matter. It's just to make sure it doesn't come back. Then I'll be fine. Then you can come visit."
He was excited and happy about this, as was I. And I was glad to get out of the conversation without lying and without frightening him--too much.
But to do so, I had to resort to the thing that has bothered me the most in this tumor business--the often repeated assurance of well-intentioned friends and family: "You'll be fine, I know it, everything will be fine." Sometimes this assurance is couched in religion, sometimes it is not.
I do not share this feeling. I do not believe in a conscious, conspiring god. I do believe that a central importance of my existence is self-awareness. Wishing away my actual situation--hardly secure or definite, a relentless doubt casting its shadow over whatever I look upon--with an hopeful but inaccurate and ultimately self-deceiving narrative--well, it doesn't do me any good. I understand good intentions, and the fact that everyone deals with things differently. My "differently" is focused on being honest and realistic with myself. Yes, the danger is that can spill over to some form of despair. I am watchful. When I hear these assurances, I feel quite alone.
I am glad to receive those warm wishes, still.
Sunday, November 28, 2010
Tuesday, November 16, 2010
Tumor gone. . . and now.
Three months later. The surgery was a success. We achieved the main goal, total resection. Known in the med literature, which I am becoming familiar with these days, as GTR. (Gross total resection.) It means they took out all of the tumor they could see. It is the best indicator for future prognosis. So that's good.
There are some lingering side effects, and since this was a trans-occipital surgery, the problems are visual, which sucks. I'll get into those later.
Yes, the tumor is, as best we can observe via Ct scan, gone. So done, right? Life can start going back to "normal", that is, once I can see clearly again. Well, I thought so. But this week has been a bit rough, because I've been coming to understand that things may be a bit more complicated than that.
Since we got the whole tumor, we were now able to get a better pathology report on what kind of tumor it was: an ependymoma.
Ah, of course you say! One of those. Your first guess, eh? This morning, someone actually bothered to explain to me what this thing is--that someone is my potential future oncologist, a Dr. Spalding. I'm not sure why I haven't had a sit down with some doctor telling me, hey, by the way, this is what was in your head, and this is what it means for the rest of your life. To be fair to Gutin and the Sloan Kettering folks, when I staggered into his office two weeks post-op with a googly post-operative eye, well doped on pain killers, looking more like a trauma victim than a patient, I suppose it wasn't exactly the best time to hit me with a dossier on the history of ependy--ependa. . . what's that, again?
And for my part, I didn't want to know. The surgery was over. It hadn't hurt nearly as much as I'd feared it would; it wasn't nearly as awful an experience as my first had been, for whatever combination of reasons. I had more residuals defects, however. I had a visual field cut--I could not see anything in the left half of both my eyes. (When I tracked my right hand across my face it disappeared as it passed my nose.) And double vision to boot. My vision would get better, they said. They couldn't guarantee it, but since the surgery went as well as they could have hoped, they had no reason to believe I'd suffered any damage. (Two months later, I now have some reason to believe there may be permanent damage, since my CT scan does show some damage in my occipital lobe. But hey, that's brain surgery.)
So I was happy to recover quietly--take walks, take pain killers to keep the headaches at bay, and lament my shitty vision, which was improving, but so slowly, it was hard to measure.
It was at that post-op meeting back in September that the word radiation was first mentioned. It might be recommended, Gutin said. But he seemed doubtful. So I was doubtful. I couldn't worry about that, so I didn't. He told me to call him in a few weeks, after the pediatric board would meet and look at my file, and they'd make an advisement.
So I came home, and started to try to adjust back to living again, now with an eye patch.
Finally, the board met, and recommended I have radiation treatment to prevent any recurrence. I was very upset about this. Six weeks, five days a week, and some nasty side effects. Why did I need it? There wasn't hard evidence, Gutin said, no controled, double blind studies. Just "soft" evidence. Some case studies of ependymomas showing that people did better with radiation than without. He didn't sound convinced, though he said if it were him, he'd have the radiation. But he also said, I didn't have to have it done.
I sat on this knowledge for a while. He sent me the one of the studies, but I didn't read it for two weeks.
Finally, I went to see a neuro ophthalmologist--this past Thursday--and I caught him up on my case history. "Radiation's a big deal," he said. "I just had a meeting with someone with the same type of tumor. He had GTR, then radiation therapy after. The tumor hasn't come back," he said, "but he's having serious problems from the radiation. Cognitive problems. I'm not recomending you don't have radiation. I'm just telling you there are serious risks. You have to know what the rewards are if you're going to do this."
Oh, and by the way, he said--you have some damage here on your ct scan, where they went *through* your occipital lobe.
"No,no," I said, "that's a mistake, they didn't go through it, they went around it. They drained the fluid so that part of the brain shrunk and worked around it."
"Yeah, well, just look here," he said, and turned his flat screen monitor so it faced me. He clicked the down arrow on the computer so it cycled through horizontal slices of my head. "See those circles?" he said. "That's all fluid. There's fluid there because those cells are dead." Then he looked me in the eyes, so that I would really get it, and he said, "Those cells are not going to come back."
I felt cold, and aware that I had lost something, just there, after he said that.
"How could that happened?" I said. "If they went around it, like they said?"
"It could have happened in a lot of ways," he said. "When they drained it, if it gets cut off from blood flow. It's like a mini-stroke. it can only go so long without oxygen. Or when it was filling back up? It's all very delicate. This is what I'm saying--neurosurgeons are great at what they do, but they usually underestimate the damage that happens in and around surgeries. It the same with radiation. Don't let anyone tell you there is little risk involved with these things. They say 2 percent, but that's just wrong. It's a lot more than that. It's better than your other options, but you need to understand this before you go ahead and make any decisions."
I felt like a glass of cold water was dumped on my head.
And those black spots on the Ct scan. Two dark little circles. That area controls my vision. Fuck. My vision. And what if we had gone, instead, supra-cerebellum? The other route that was suggested and debated before the surgery? I began to say this to the doctor. It reminded me of my father and all his gambling buddies, lamenting their bets after the game was over, if they had only saw this, if they had only bet how they felt or made some choice, if only, if only. "We can't look at that," the doctor said. "There's no point to it." I knew that, I knew it. But what if we had gone a different way? Would I be able to see now?
So I read the article. I had questions--how sure were they of my pathology- that is was the tumor they believed it to be? And if they was any uncertainty, did that parlay into uncertainty about how the tumor would react to radiation, and how likely it was to recur?
And now, comign full curcle, back to ependymomas--they seem to be more common in children--90 percent of cases are under 18. Was this a confounding factor, that made me different than the poeple in the studies? Also, the placement was slightly different--did that matter? Maybe that made me better off also.
Fien questions, and they were all answered today by the oncologist.
Since ependymomas are a very specific type of tumor, and being that Sloan-Kettering is maybe the best brain tumor hospital in the world, the pathology is as correct as any pathology right can be. (Since they are all educated guess at made up categories.)
Fine. And the age? As best we know, ependymoma act the same in adults as they do in children. Hmm. Okay. Placement?
Dr. Spalding drew a picture. "up here, near the top is your ventrical sac. It where your body store your cerebrospinal (CSF) fluid. All along the walls of the ventrical are ependymoma cells. we call these cells "little faucets" because they create--are the faucets--for the CSF. They even line the tubes, which carry the CSF down your spine. This," he said as he inked a dark circula spot," is your pineal gland. There's a tube right next to it. That's where your tumor was. When the cells grow, and form a mass, we call it an ependymoma." God, it felt good to hear him say all that. It was a small consice explanation, and while it didn't change a thing, it made me feel a tiny bit better.
Then he wrote down more things.
He wrote, and spoke, as he wrote: Total section, and monitoring. Recurrence rate of seventy to eighty percent.
I guessed, from the reading I'd done, it was fairly high. I hadn't guess that fucking high.
He kept writing.
Total resection, he said, with radiation therpay, recurrance rates are 15 to 20 percent.
"To the best of our knowledge," he said.
Of course, this was all to the best of our knowledge.
This is all at 10 years. We rarely have data after ten years.
And radiation?
30 treatments. 5 days a week for 6 weeks.
And how much radiation do we need," I said, "to prevent it? On average?"
"On a scale of one to ten?" he said.
"Sure."
He paused only a mili-second. "Eight."
Fuck.
There are short term and long term effects. he said. Short term, he said, as he wrote the same words down on the back of a paper: hair loss, headache, vomiting, vision problems, fatigue. The fatigue can be debilitating.
Long term: tumor growth. It is possible to get a tumor, a non-ependymoma, from radiation. One in maybe 10,000. You can suffer other damage to different parts of the brain. Hearing loss, speech, functioning, learning impairment. This happens in less than five percent of the cases.
Five percent. I haven't exactly been feeling all that lucky lately.
He says I need to decide before Thanksgiving, because it' already two months out of surgery and we don't want to miss our chance at radiation. If it comes back, it's already too late.
And yes, the tumor is more insidious once it comes back. It tends to become more entwined in brain matter. Surgery in the same region is more tricky, since there is scar tissue in the same regions.
The idea is to prevent the sucker from coming back before that can happen. He was unequivocal about his opinion--the best outcome is with radiation therapy.
I won't think about it too long.
There are some lingering side effects, and since this was a trans-occipital surgery, the problems are visual, which sucks. I'll get into those later.
Yes, the tumor is, as best we can observe via Ct scan, gone. So done, right? Life can start going back to "normal", that is, once I can see clearly again. Well, I thought so. But this week has been a bit rough, because I've been coming to understand that things may be a bit more complicated than that.
Since we got the whole tumor, we were now able to get a better pathology report on what kind of tumor it was: an ependymoma.
Ah, of course you say! One of those. Your first guess, eh? This morning, someone actually bothered to explain to me what this thing is--that someone is my potential future oncologist, a Dr. Spalding. I'm not sure why I haven't had a sit down with some doctor telling me, hey, by the way, this is what was in your head, and this is what it means for the rest of your life. To be fair to Gutin and the Sloan Kettering folks, when I staggered into his office two weeks post-op with a googly post-operative eye, well doped on pain killers, looking more like a trauma victim than a patient, I suppose it wasn't exactly the best time to hit me with a dossier on the history of ependy--ependa. . . what's that, again?
And for my part, I didn't want to know. The surgery was over. It hadn't hurt nearly as much as I'd feared it would; it wasn't nearly as awful an experience as my first had been, for whatever combination of reasons. I had more residuals defects, however. I had a visual field cut--I could not see anything in the left half of both my eyes. (When I tracked my right hand across my face it disappeared as it passed my nose.) And double vision to boot. My vision would get better, they said. They couldn't guarantee it, but since the surgery went as well as they could have hoped, they had no reason to believe I'd suffered any damage. (Two months later, I now have some reason to believe there may be permanent damage, since my CT scan does show some damage in my occipital lobe. But hey, that's brain surgery.)
So I was happy to recover quietly--take walks, take pain killers to keep the headaches at bay, and lament my shitty vision, which was improving, but so slowly, it was hard to measure.
It was at that post-op meeting back in September that the word radiation was first mentioned. It might be recommended, Gutin said. But he seemed doubtful. So I was doubtful. I couldn't worry about that, so I didn't. He told me to call him in a few weeks, after the pediatric board would meet and look at my file, and they'd make an advisement.
So I came home, and started to try to adjust back to living again, now with an eye patch.
Finally, the board met, and recommended I have radiation treatment to prevent any recurrence. I was very upset about this. Six weeks, five days a week, and some nasty side effects. Why did I need it? There wasn't hard evidence, Gutin said, no controled, double blind studies. Just "soft" evidence. Some case studies of ependymomas showing that people did better with radiation than without. He didn't sound convinced, though he said if it were him, he'd have the radiation. But he also said, I didn't have to have it done.
I sat on this knowledge for a while. He sent me the one of the studies, but I didn't read it for two weeks.
Finally, I went to see a neuro ophthalmologist--this past Thursday--and I caught him up on my case history. "Radiation's a big deal," he said. "I just had a meeting with someone with the same type of tumor. He had GTR, then radiation therapy after. The tumor hasn't come back," he said, "but he's having serious problems from the radiation. Cognitive problems. I'm not recomending you don't have radiation. I'm just telling you there are serious risks. You have to know what the rewards are if you're going to do this."
Oh, and by the way, he said--you have some damage here on your ct scan, where they went *through* your occipital lobe.
"No,no," I said, "that's a mistake, they didn't go through it, they went around it. They drained the fluid so that part of the brain shrunk and worked around it."
"Yeah, well, just look here," he said, and turned his flat screen monitor so it faced me. He clicked the down arrow on the computer so it cycled through horizontal slices of my head. "See those circles?" he said. "That's all fluid. There's fluid there because those cells are dead." Then he looked me in the eyes, so that I would really get it, and he said, "Those cells are not going to come back."
I felt cold, and aware that I had lost something, just there, after he said that.
"How could that happened?" I said. "If they went around it, like they said?"
"It could have happened in a lot of ways," he said. "When they drained it, if it gets cut off from blood flow. It's like a mini-stroke. it can only go so long without oxygen. Or when it was filling back up? It's all very delicate. This is what I'm saying--neurosurgeons are great at what they do, but they usually underestimate the damage that happens in and around surgeries. It the same with radiation. Don't let anyone tell you there is little risk involved with these things. They say 2 percent, but that's just wrong. It's a lot more than that. It's better than your other options, but you need to understand this before you go ahead and make any decisions."
I felt like a glass of cold water was dumped on my head.
And those black spots on the Ct scan. Two dark little circles. That area controls my vision. Fuck. My vision. And what if we had gone, instead, supra-cerebellum? The other route that was suggested and debated before the surgery? I began to say this to the doctor. It reminded me of my father and all his gambling buddies, lamenting their bets after the game was over, if they had only saw this, if they had only bet how they felt or made some choice, if only, if only. "We can't look at that," the doctor said. "There's no point to it." I knew that, I knew it. But what if we had gone a different way? Would I be able to see now?
So I read the article. I had questions--how sure were they of my pathology- that is was the tumor they believed it to be? And if they was any uncertainty, did that parlay into uncertainty about how the tumor would react to radiation, and how likely it was to recur?
And now, comign full curcle, back to ependymomas--they seem to be more common in children--90 percent of cases are under 18. Was this a confounding factor, that made me different than the poeple in the studies? Also, the placement was slightly different--did that matter? Maybe that made me better off also.
Fien questions, and they were all answered today by the oncologist.
Since ependymomas are a very specific type of tumor, and being that Sloan-Kettering is maybe the best brain tumor hospital in the world, the pathology is as correct as any pathology right can be. (Since they are all educated guess at made up categories.)
Fine. And the age? As best we know, ependymoma act the same in adults as they do in children. Hmm. Okay. Placement?
Dr. Spalding drew a picture. "up here, near the top is your ventrical sac. It where your body store your cerebrospinal (CSF) fluid. All along the walls of the ventrical are ependymoma cells. we call these cells "little faucets" because they create--are the faucets--for the CSF. They even line the tubes, which carry the CSF down your spine. This," he said as he inked a dark circula spot," is your pineal gland. There's a tube right next to it. That's where your tumor was. When the cells grow, and form a mass, we call it an ependymoma." God, it felt good to hear him say all that. It was a small consice explanation, and while it didn't change a thing, it made me feel a tiny bit better.
Then he wrote down more things.
He wrote, and spoke, as he wrote: Total section, and monitoring. Recurrence rate of seventy to eighty percent.
I guessed, from the reading I'd done, it was fairly high. I hadn't guess that fucking high.
He kept writing.
Total resection, he said, with radiation therpay, recurrance rates are 15 to 20 percent.
"To the best of our knowledge," he said.
Of course, this was all to the best of our knowledge.
This is all at 10 years. We rarely have data after ten years.
And radiation?
30 treatments. 5 days a week for 6 weeks.
And how much radiation do we need," I said, "to prevent it? On average?"
"On a scale of one to ten?" he said.
"Sure."
He paused only a mili-second. "Eight."
Fuck.
There are short term and long term effects. he said. Short term, he said, as he wrote the same words down on the back of a paper: hair loss, headache, vomiting, vision problems, fatigue. The fatigue can be debilitating.
Long term: tumor growth. It is possible to get a tumor, a non-ependymoma, from radiation. One in maybe 10,000. You can suffer other damage to different parts of the brain. Hearing loss, speech, functioning, learning impairment. This happens in less than five percent of the cases.
Five percent. I haven't exactly been feeling all that lucky lately.
He says I need to decide before Thanksgiving, because it' already two months out of surgery and we don't want to miss our chance at radiation. If it comes back, it's already too late.
And yes, the tumor is more insidious once it comes back. It tends to become more entwined in brain matter. Surgery in the same region is more tricky, since there is scar tissue in the same regions.
The idea is to prevent the sucker from coming back before that can happen. He was unequivocal about his opinion--the best outcome is with radiation therapy.
I won't think about it too long.
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