Tonight I was reading a book by a Buddhist nun, called, *When things Fall Apart*. A close friend mailed it to me after she'd heard about my brain tumor.
It occurred to me while I was reading that I hadn't actually meditated in some years. Since I was liking this book, and since the book kept coming back to meditation and how it did and did not work, I figured now was a fine time to just sit and actually meditate.
I was fairly relaxed. I found my mind pretty quiet for the first minute or so. A few thoughts came, but I let them pass.
Then I thought about the surgery. I was imagining--as I often do--the little square they'll cut out of the back of my head. I can feel it open up like a little door.
This thought is not remarkable. I have it a lot; I find myself sometimes, often late at night, imagining the hole. I feel it there, under my hair. Then I think back to the first surgery. The light fixture in the hospital room is covered with a screen print of blue sky. Some leaves playfully creep out of the corner. At first I think it silly. But as the pain, piercing and precise, works on my senses, as each second ticks by, spiteful, deliberate--that stupid light fixture is a tiny, but blessed, relief.
The memories quickly turn to imaginings. Imaginings of the next surgery. How will I be able to rest when the back of my head is the wound? Will I have to lie on my stomach? Or will they give me some special pillow with a firm outside and big empty hole in the middle? The pain, I understand, will be worse. The recovery longer. I have never liked pain much. I still feel pretty strongly about that.
This memory/projection is a common flight-of-thought. But tonight I do not even get past the the little door. I stop right there, aware of where my thoughts are heading. And I just notice it--the thought--like I had noticed all the other thoughts before it.
Then--like this was a surprise--I thought, "Oh. . .I'm afraid. I'm afraid of having this surgery." And then I began to feel a burning in my chest. I was shuddering a bit. Not tears, but almost.
I really was afraid. Of course I was. Silly, maybe, not to realize it. But for all the nights my mind had run through those thoughts, idly, almost meaninglessly, like one might run through their grocery list, and for all the moments I told myself in an offhand way, "Yes, I'm sure I must, at some level, be afraid of this," I hadn't really felt it--or believed it--all too much.
But for a few moments, tonight, I did.
I went back to meditating. The crying sensation passed pretty quick. I was lucid again, staring blankly at my wall. Then, more thoughts--I was noticing how the paint job was uneven, and began wondering how to deal with the crown moulding--should I paint it first? How did it fasten to the wall?
Of course--my house. Still quite unfinished, any place I look is a vision of worry and work. Having these things--toolboxes, moulding--cluttering my mind as much as my house, is so common, so constant, it's normally not even something to notice. It's as consistent as my breath. But I am noticing my breath. This is the point.
Of course I am worried about my house. How could I not? I am afraid. I am worried. But weirdly, I have been detached from the awareness of these simple facts, despite how obvious they may be.
Tonight, for a few moments, I felt I was watching myself from above. I saw myself afraid of a major surgery, worried about a ton of work I still had left on my house, and I was OK with that. It was nice to be above it all for a just a few moments, to see myself from the outside. A tiny, but blessed, relief.
I was liking this feeling, this awareness. I wanted to keep going. What else was I feeling, doing? I realized, very quickly, I had almost no other thoughts. Which was because when I wasn't thinking about the house or my head, I was taking pain and anxiety pills and watching TV. When I wasn't doing that, I was feeling bad about the fact that I was not being more productive.
This picture now made sense. My mind is active, alert, but alternatively filled with dread and frustration. After a while, I can't deal with that anymore. So I shut down, become depressed. This is drudgery; it is awful. But at least my mind is quiet. Still, I can only take so much of that, especially since I've been there so many times in the past. So I chastise myself, recognizing that shutting down is making me miserable. Be productive, Frank! Do something! My mind kicks back into gear. I'm reading some, writing some. But soon the thoughts of head and house come back, and we begin again.
Fun!
But I am feeling better. It feels good to have a little grasp of all this.
Wednesday, June 23, 2010
Friday, June 4, 2010
After the results
Short version: Last week I got the biopsy results and they came back benign. This means that radiation will be ineffective, so the move is open-skull surgery. The goal is to completely remove the tumor, and hope for a 100 percent cure--snip, snip, suck and done.
It is a tricky lay; the tumor is in the middle of my head. The plan, as it was showed to me on computer screens, is to position me on my stomach, then cut a nice square of bone out of the back of my skull. Then they reach in, cradle my thalamus, snip and tie-off a few arteries, then dislodge my thalamus enough so that they can gain access to the channel leading to the Center of My Brain and the sneaky little tumor hiding there.
Then they take out as much of the tumor as possible. Knifes, suckers, snippers, grabbers. I imagine they look like miniature versions of my house tools.
The snag is that the tumor sits on my brain stem, and that last one percent of tumor bit that's attached to the stem could be very dangerous to remove. So sometimes they will leave that bit--the doctor would not want to risk doing any real damage, like leaving me paralyzed or in a coma. The risk, however, in leaving that last bit is that it might eventually decide to grow again, and some day, we'll have to go through this show again. Still, that's better than poking the inside of my stem and turning me into a breathing sponge.
How tricky this will be will only reveal itself during the surgery. It's one of the many calls the neurosurgeon cannot prepare for. All things are decided while my head is open and I am in that fast and deep anesthetic sleep.
Other facts:
It's an eight to ten hour surgery. The rehab will be more significant than the last surgery, which was quite easy. This time I will have to go to a rehab center and stay for a week or two. There will probably be some balance and coordination issues that might take some months to get back to 100 percent. Everyone is different, is what they tell me. So there's no telling precisely how easy or hard this will be.
There is good news in all this--the doctor did seem to feel that there was a 2 percent of less chance of anything going Very Wrong. (This is the death, coma, permanent disability type-stuff). Going into this, with the research Trudi and I had done, we had found a meta-study of this type of surgery, and in it the red zone percentages were closer to 10 percent. Hence why I've been so afraid of having this surgery.
But our doctor explained that those numbers included all cases--severe or desperate(did he call them hopeless?) cases who were most likely to die anyway, and old people, all of which makes a significant difference in the morbidity numbers. For me, he said, ten percent is not a realistic number. So, in the way of catastrophic possibilities, it's the same as the first procedure--2 percent. Frightening, but doable. So we roll the dice again.
Now, it's a matter of choosing when and where and with whom to have this surgery. I am unable to make any such decisions right now, or indeed, think about things like that at all.
Since Friday I have been very anxious and lethargic. I sleep a lot and do not answer my phone. I don't know why exactly--I was told almost exactly what I expected I would be told.
The previous stage- waiting for the biopsy results--was a safe place. I had made it through the first surgery, and though I knew that more difficult things were to come, I still felt some sense of strength. I had brain surgery; I was fine. I could sit and wait. I could watch TV, play guitar hero, watch movies, walk the dogs, even start a small amount of house work again.
And then the biopsy results. I am filled with tremors. I can feel them in my stomach, in my hands. I have these itches, which I can't place. They're in my hands, but I can't scratch them. They're inside my skin, in places I can't find.
I find it difficult to sit still. I want to do things with the house, but I find that even thinking about a choice, any choice--buy a desk? from where? for how much? Where will I put it? What about the sofa? and when are we doing the painting in the kitchen? did we buy the paint already?
All these things were so easy to deal with before. They were nothing. They were just questions. I thought them over, talked about it with Trudi, weighed the pros and cons and Blam--made a choice. So simple. Things got done.
Now? I feel everything--any one question and its many possibilities, the possibilities of what I could choose, or what it all could become. The possibilities come like an hammering waterfall, pressing and beating on me.
It's been hard to write, hence the week-plus layoff. I start something, then stop, then start again. I cannot finish.
My parents are also filled with anxiety, and talking to them makes my arms itch and I want to hang up the phone.
Here's an example from the house. We have an impressive barge of trash floating in our yard--our discarded carpets, sheet rock, boxes and boxes and tons of bags filled with all manner of house debris. I've been waiting for the pile to accumulate enough to hire a dumpster, and then get rid of it in one big shot.
Well, the other day we had some local boys--not boys by their age but by their good-ole sounding demeanor--who wanted to trim our lawn which had grown up to knee-height in some spots, and also offered to move our trash out to the edge of our property in the alley behind our house. They wanted ten bucks to move this mountain of trash. "Nah," I said. I said no because I had seen what happened to our neighbors who had put a few trash bags at the end of their property line in the alley--someone came along and dumped a ton of crap on them--furniture, bags, boxes, moldy mattresses. I didn't want to see this to happen to me. So I told the guy not to move the trash over. Plus I didn't think that the city would pick up that stuff anyway, and I'd still have to hire a dumpster. What was the point?
This morning, brush and bulky came, and like magic, with a mini-crane, they lifted all the neighbor's trash away. Trudi had called me over, ecstatic to watch. "Wow, look at that!" she said. She clapped and giggled. "It's like the prize game at arcades, where you have to grab the toy with the mechanical arm." We watched it lift a small dresser, hover it over the dumpster, then crush it flat in one squeeze.
"Isn't that cool?" she said.
I sighed. "Fuck, fuck."
"What's the matter."
"Nothing," I said. "It's just I could have had those guys take all this trash out there." I looked at the twin piles of garbage in my yard, just outside my back windows, sixty feet away from the mobile dumpster passing through our alley. It was too late.
"I could have had those guys drag all this out there. We could have been rid of all this stuff. Goddammit. Why didn't I let them take it out?"
Trudi looked at me. I could tell she was shocked. This is not my normal self. I have learned some good ways of dealing with things in life. Partly from learning to deal with my rageing father as a child, partly from twelve step stuff when I was older. But I have learned how to deal with these little life things, how to not let them derail me. It's simple--there's no sense in regretting something's that's done. Learn from it for next time, then move on. I was a pro at this. Not only was the whole garbage situation upsetting, but I understood my reaction to it to be a regression of sorts. I could not handle things I used to handle. I knew better than to be upset over this. I made a choice, it was a mistake, but nothing I couldn't fix. So I'd just have to hire a dumpster and clean it out myself. I knew it wasn't a big deal.
But it felt like it was. I had fucked up. I had not thought things through correctly. I had made things harder on myself, things I would have to deal with in the future.
I walked away from the kitchen, not wanting to see the pile of junk sitting in the backyard.
Trudi came up behind me quick, and gave me her positive thinking stuff. "It's fine, it's no big deal." Of course, I knew this. Which angered me more. I knew this, yet still felt crippled with regret over such a little thing. I wanted to run away from that backyard, get it out of my sight.
I know this is all about the tumor. I know I am afraid if might make the wrong choice, an inefficient choice, like I did here--what would this mean for my life? This place, where I live now, is not as easy a place as it once was.
It is a tricky lay; the tumor is in the middle of my head. The plan, as it was showed to me on computer screens, is to position me on my stomach, then cut a nice square of bone out of the back of my skull. Then they reach in, cradle my thalamus, snip and tie-off a few arteries, then dislodge my thalamus enough so that they can gain access to the channel leading to the Center of My Brain and the sneaky little tumor hiding there.
Then they take out as much of the tumor as possible. Knifes, suckers, snippers, grabbers. I imagine they look like miniature versions of my house tools.
The snag is that the tumor sits on my brain stem, and that last one percent of tumor bit that's attached to the stem could be very dangerous to remove. So sometimes they will leave that bit--the doctor would not want to risk doing any real damage, like leaving me paralyzed or in a coma. The risk, however, in leaving that last bit is that it might eventually decide to grow again, and some day, we'll have to go through this show again. Still, that's better than poking the inside of my stem and turning me into a breathing sponge.
How tricky this will be will only reveal itself during the surgery. It's one of the many calls the neurosurgeon cannot prepare for. All things are decided while my head is open and I am in that fast and deep anesthetic sleep.
Other facts:
It's an eight to ten hour surgery. The rehab will be more significant than the last surgery, which was quite easy. This time I will have to go to a rehab center and stay for a week or two. There will probably be some balance and coordination issues that might take some months to get back to 100 percent. Everyone is different, is what they tell me. So there's no telling precisely how easy or hard this will be.
There is good news in all this--the doctor did seem to feel that there was a 2 percent of less chance of anything going Very Wrong. (This is the death, coma, permanent disability type-stuff). Going into this, with the research Trudi and I had done, we had found a meta-study of this type of surgery, and in it the red zone percentages were closer to 10 percent. Hence why I've been so afraid of having this surgery.
But our doctor explained that those numbers included all cases--severe or desperate(did he call them hopeless?) cases who were most likely to die anyway, and old people, all of which makes a significant difference in the morbidity numbers. For me, he said, ten percent is not a realistic number. So, in the way of catastrophic possibilities, it's the same as the first procedure--2 percent. Frightening, but doable. So we roll the dice again.
Now, it's a matter of choosing when and where and with whom to have this surgery. I am unable to make any such decisions right now, or indeed, think about things like that at all.
Since Friday I have been very anxious and lethargic. I sleep a lot and do not answer my phone. I don't know why exactly--I was told almost exactly what I expected I would be told.
The previous stage- waiting for the biopsy results--was a safe place. I had made it through the first surgery, and though I knew that more difficult things were to come, I still felt some sense of strength. I had brain surgery; I was fine. I could sit and wait. I could watch TV, play guitar hero, watch movies, walk the dogs, even start a small amount of house work again.
And then the biopsy results. I am filled with tremors. I can feel them in my stomach, in my hands. I have these itches, which I can't place. They're in my hands, but I can't scratch them. They're inside my skin, in places I can't find.
I find it difficult to sit still. I want to do things with the house, but I find that even thinking about a choice, any choice--buy a desk? from where? for how much? Where will I put it? What about the sofa? and when are we doing the painting in the kitchen? did we buy the paint already?
All these things were so easy to deal with before. They were nothing. They were just questions. I thought them over, talked about it with Trudi, weighed the pros and cons and Blam--made a choice. So simple. Things got done.
Now? I feel everything--any one question and its many possibilities, the possibilities of what I could choose, or what it all could become. The possibilities come like an hammering waterfall, pressing and beating on me.
It's been hard to write, hence the week-plus layoff. I start something, then stop, then start again. I cannot finish.
My parents are also filled with anxiety, and talking to them makes my arms itch and I want to hang up the phone.
Here's an example from the house. We have an impressive barge of trash floating in our yard--our discarded carpets, sheet rock, boxes and boxes and tons of bags filled with all manner of house debris. I've been waiting for the pile to accumulate enough to hire a dumpster, and then get rid of it in one big shot.
Well, the other day we had some local boys--not boys by their age but by their good-ole sounding demeanor--who wanted to trim our lawn which had grown up to knee-height in some spots, and also offered to move our trash out to the edge of our property in the alley behind our house. They wanted ten bucks to move this mountain of trash. "Nah," I said. I said no because I had seen what happened to our neighbors who had put a few trash bags at the end of their property line in the alley--someone came along and dumped a ton of crap on them--furniture, bags, boxes, moldy mattresses. I didn't want to see this to happen to me. So I told the guy not to move the trash over. Plus I didn't think that the city would pick up that stuff anyway, and I'd still have to hire a dumpster. What was the point?
This morning, brush and bulky came, and like magic, with a mini-crane, they lifted all the neighbor's trash away. Trudi had called me over, ecstatic to watch. "Wow, look at that!" she said. She clapped and giggled. "It's like the prize game at arcades, where you have to grab the toy with the mechanical arm." We watched it lift a small dresser, hover it over the dumpster, then crush it flat in one squeeze.
"Isn't that cool?" she said.
I sighed. "Fuck, fuck."
"What's the matter."
"Nothing," I said. "It's just I could have had those guys take all this trash out there." I looked at the twin piles of garbage in my yard, just outside my back windows, sixty feet away from the mobile dumpster passing through our alley. It was too late.
"I could have had those guys drag all this out there. We could have been rid of all this stuff. Goddammit. Why didn't I let them take it out?"
Trudi looked at me. I could tell she was shocked. This is not my normal self. I have learned some good ways of dealing with things in life. Partly from learning to deal with my rageing father as a child, partly from twelve step stuff when I was older. But I have learned how to deal with these little life things, how to not let them derail me. It's simple--there's no sense in regretting something's that's done. Learn from it for next time, then move on. I was a pro at this. Not only was the whole garbage situation upsetting, but I understood my reaction to it to be a regression of sorts. I could not handle things I used to handle. I knew better than to be upset over this. I made a choice, it was a mistake, but nothing I couldn't fix. So I'd just have to hire a dumpster and clean it out myself. I knew it wasn't a big deal.
But it felt like it was. I had fucked up. I had not thought things through correctly. I had made things harder on myself, things I would have to deal with in the future.
I walked away from the kitchen, not wanting to see the pile of junk sitting in the backyard.
Trudi came up behind me quick, and gave me her positive thinking stuff. "It's fine, it's no big deal." Of course, I knew this. Which angered me more. I knew this, yet still felt crippled with regret over such a little thing. I wanted to run away from that backyard, get it out of my sight.
I know this is all about the tumor. I know I am afraid if might make the wrong choice, an inefficient choice, like I did here--what would this mean for my life? This place, where I live now, is not as easy a place as it once was.
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