Tomorrow we go back to see the doctors--"The Brain Trust" is how I like to think of them--and get the biopsy results. Tonight, I cannot sleep.
I do not imagine tomorrow. I don't have to push this out of my mind. Instead, I have been awash in self-distraction. (I have always been good at self-distraction. This has spared me a lot of pain and caused me a lot more. There is no point in adding this up, because no one I know has a calculator for such things.)
Today's distractions? I stood in our mess of a kitchen and said to Trudi, "What can we do today to at least make us feel like we're getting somewhere?" And so we spent the day like we had been spending most our days before this tumor nonsense took over--on our hands and knees.
Trudi pulls out staples from the recently uncarpeted wood floors with some pliers and a chisel while I sweat and hammer the end of a crowbar under the thin strips of tack-board that are nailed to the floor all around the corner of the room. Clang, clang, clang, then push down on the crowbar and up pops a few inches of strip. Wedge it in again and clang, clang, clang, then push down and up come a few more inches. I move faster and get sweatier. "Are you alright?" Trudi keeps asking. I am both grateful for and annoyed at the tenacity of her concern. I wipe my forehead, over and over, careful not to touch the wound.
I work this way, rhythmically, thumping, popping, pulling along the edges of what we call "Room 2." We call it this because of its sequential location from the front of the house. Calling this "Room 2" was Trudi's idea--an idea I, at first, scoffed at. Now I recognize its concise genius. It's a family tradition: we had just finished a nine month life-transition-limbo phase, living with Trudi's parents out in Tucson, Az. That wonderfully bright and airy desert house had a "Room X", "Room Y" and a "Room Z". We have "Room 1", "Room 2", and "Room 3."
I found more distractions. This morning, a short and friendly salesman with an African name come to my door and so by this evening I had a surly installer without an African name also come to my door and then drill and wire until we had cable television with a HD-DVR box. Everything moves with such speed, MRIs, endoscopes, DVRs.
TV! I spent the evening watching Being John Malkovitch. The First 48. A documentary about Castro. I did not think about tomorrow.
But the hours rolled on, it was twelve, it was one, it was two. I went to bed, not because I was tired, but because I knew Trudi wanted to cuddle me for a while. I would like that as well.
In bed, once again, I didn't think about tomorrow. I thought about last week, last Saturday night in the hospital. I went over that night, narrating it to myself in the dark.
I would be lying if I said I have not imagined tomorrow at all. I have. Briefly, just in flashes, here and there. They catch me off guard. Sometimes in the shower. Sometimes when I'm hammering.
Here's what I see:
Me, Trudi and the Brain Trust sit at a long and very beautiful conference table. It is dark, but there is some late afternoon sunlight coming in through the windows. The shades are a very offical but mellow seeming dark-blue, and this is the same hue of the darkness. There are several chairs, seating a handful of doctors. I can barely see their faces. They have file folders they finger slowly in front of them. I hear words and phrases about the tumor, most divorced from faces and meaning. I catch something about its "marginality"--how much it sticks to the surrounding brain matter. This is important; it will determine my functioning and suffering. I hear the word "surgery." In my fantasy, this tumor is benign, and this makes me cringe.
As my fantasies tend to go, this is remarkably vague. There's no plot, dialogue. It's all setting. It is a still, not a scene.
Benign: I have imagined the most likely scenario. It's quite practical of me--always go with the better odds. But perhaps I am imagining it because it is the one I am more afraid of. I don't want the fast but risky and painful option. I'll take cancer and its slower, less dramatic chemo and radiation buffet treatments. I can deal with six months of the slow rather than the opening up of the skull. I think.
Thursday, May 27, 2010
Sunday, May 23, 2010
A Normal Sunday
Trudi and I spent this Sunday morning as we had spent our previous Sunday mornings pre-tumor: we went to The Fishhouse, where on weekends they serve New Orleans style beignets and chicory coffee.
This is our first, and so far, favorite local ritual. When I woke this morning and realized through the blinding sunlight (still no real shades) that it was in fact Sunday and that I had someplace I looked forward to going to--I was happy. Excited even.
As I've become older the number of things that stir me to "excitement" dwindles. It's my consequence of aging. Experience loses its sheen. Not necessarily in my experience of it during, or even in my analysis of it after, but mainly in my imagining of it before. Either an event--let's say brunch, for example--becomes familiar enough that I believe I know it well enough that there is little novel reward to expect.
Plus there are always the bad things. When I go to brunch, there are myriad fears lurking--meeting new people if that's part of the agenda, having conversations with those new people which cause me to question the self-delusions I've crafted (those took so long to ferment--such a shame to see them erode away over some over-thought breakfast dish), getting in a life-threatening car accident on the way to such conversations, or even getting lost--which never makes you feel good about your ability to navigate life.
Add to this list the entirety of possibilities which I cannot imagine. Possibilities so remote, so dependent on other possibilities, that trying to imagine them would bring me closer to a paranoid fantasy than a rational thought-line. Still, without going into any details, I factor in the small possibility of these floating, amorphous bad things. (Understood, there is a flip-side, a possibility of unknown and unguessable good things that could happen. I could meet a new friend, find a lotto ticket, things like that. But this is not something that I realistically care about. An unknown fear is something rational to be dealt with, an unknown boost seems a non-consideration.)
All these potential bads, combined with the low-expectation of goods, keep most activities, familiar or not, on the no-thanks-maybe-some-other-time list. (This is a system of thought I often have to manually override. Simply because I know the list is getting too long. If the system had its way, I may, someday sooner than I might expect, be doing nothing at all.)
This whole line of consideration could be placed under the category of "depression and depressive thoughts." But I hate that category, mainly because of how socially contextually driven its existence is. I prefer to leave it out, or only mention it like so.
Which is all to say, maybe I'm feeling a bit "depressed" these days? Which in and of itself is a depressing thought (huh?). I mean, the fact that I can still feel depressed after having this life-frightening event is, well, I don't know. It means things are normal in the good and bad way. It means I'm not dying--yeah! It means I'm not dying, booh!
I still have to deal with the same old same old. Which is partially "depression" and that fact itself feels a bit "depressing."
But this morning, brunch excites me. Sure, I can explain this easily enough by the relatively near-death scare of a brain tumor and brain operation. (I've had brain surgery! Sometimes I still don't really believe it, despite the nine inch laceration that hides behind my new hair line.)
At breakfast: We sat and drank our coffee, while we waited for our beignets and potato cakes to be brought out to us. I cleaned up the coffee that spilled as the table wobbled. I kept looking around us--at each of our sides we were flanked by young families with a single child. The women were fairly attractive, and looked to be about my age. I imagined they still considered themselves sexual beings--as one girl bent over to lift up her son, I could see a full view of her breasts. She looked me in the eyes for a moment, and then back to the kid. She was not unpretty, and while her breasts were remarkable in their fullness, not much more about her stirred me. Still, I thought, women don't put on shirts without knowing how visible their bodies are in them. I imagined her and her husband at parties, drinking, flirting with each other or with other people. Where are the kids when this happens? Does this scene happen at all?
I began scribing a poem to her in my mind: To The Mother In The Blue Dress Barely Containing Your Breasts your face is not so pretty/ your husband has a pony tail/ you want me to fuck you. . . You don't want me/ you want someone you don't know at a brunch house to want to fuck you, because that means you're still doing something right.
I hadn't worked out the line breaks exactly.
"What are you thinking about?" Trudi asked.
"Nothing," I said, in my kid voice.
"Oh, bullshit," she said.
"You're bullshit," I said.
"Why don't you tell me what you're thinking."
"Because I don't know if I want to talk about it. It's nothing, it's just. . I was just noticing how young all these people with kids are."
"They're not really young."
"No, I know, they're not like, especially young or something. I guess they just felt like my age range or so--young like that."
"You're not thinking about having kids are you?"
"Fuck, no, well. . . shit." I said. I stared down into my coffee, and swirled the cup around. "Thanks for ruining it."
"What?"
"Eh, you know, when you're thinking about something but you don't realize you're actually thinking about it. And then when you realize it, it ruins the whole thing."
"Uh. . .not really. But is that what you were thinking about?"
"Well, sort-of, indirectly. I mean, I don't know, but it seems to make sense, I guess, from your perspective--"
"Oh, fuck you," Trudi said, laughing. She put her coffee down. "Me? What, and my ovaries?"
"Oh," I laughed. "That's not what I meant. I just meant, you know, anyone outside of me, how they would see it. But since you react that way, I guess that's something." I smirked, knowing this would burn enough to take the focus off me.
Trudi finished her last gulp of coffee. "I've been thinking about Mandy's kids," she said. "I never realized how much my brother and I learned from our parents. I mean, not so much factual stuff--"
"But how to think about the world." I said.
"Yeah. I guess I thought how we were brought up was how everyone was brought up. But I guess not."
"So you're doing the same thing?"
"What?"
"You're thinking about having kids too?"
"Ah, dammit!" she said.
"See what I mean? Ruins the whole thing."
"Yeah," Trudi said.
I'm seven years older than Trudi. It's something we've both been a little worried about--our difference in age handing us different desires re: children. Of course, there's this tumor thing now, too, which changes stuff. (A brain tumor will change you!)
My primary doc had told me the good news. After he had spoke to me for some long time about brain tumors, he left me alone in his office to go do something or other, I don't remember what. (Me standing there alone in his office feels like the first moment I had a tumor--not when I was told ten or fifteen minutes earlier, and not the first moment I actually had it-because when the hell was that exactly?--but the first moment, after having been told, where I was alone-that was when I first had it.) I stood in his office and looked at his photos. He had one child in the pictures. I thought about two things:
One: I hadn't finished my book. I wasn't angry about this. I didn't feel this was due to any lack of determination or personal integrity or work ethic (as I do right now). I was just busy with other life-things, was how I saw it.
Two: I didn't have a child. I was immediately aware that these two considerations were probably the same--the desire to leave something of myself behind. To feel like I changed the world in a concrete, visible way.
I wondered if I had time to have a kid. I was still completely ignorant of my real situation--I knew nothing of the pineal gland tumors and their treatableness. Unfortunately, neither did my doctor. So while he had tried to make me feel like there were plenty of treatment options, I only heard "brain tumor." Since my next door neighbor and ex-hook-up (same person) had died of a brain tumor and its cancerous origins, it seemed that "brain tumor" = "death." Not immediately, but eventually, after some painful and embarrassing months of "treatment."
But maybe I had a couple of years--who knew? If I did have a few years, I could have Trudi carry my child. I guessed that she would do that for me if I asked. Who could refuse that? I wondered if that would be fair to Trudi, or to this future child. Was this selfish or giving? What would their lives be like after I were gone? I imagined writing him endless letters, or making videos, or audio tapes. (Actually, all this would be digital. Much less fun.) I recalled a movie where a would-be father gets cancer and makes a cache of videos of life-lessons for his child.
The doctor returned. He told me more things about tumors and surgeries. I stopped fantasizing about having a child and started concerning myself with staying alive.
I told Trudi about it later that night at dinner--which, since it still was before I knew I had a better than good chance at living, was my own "last supper."
"I would, you know," she said between bites of thirty-dollar duck. I had hoped the duck was worth it. "If you wanted me to."
I nodded. I was happy to know this. But I didn't want to have a kid. I mean, I wasn't dying or anything.
This is our first, and so far, favorite local ritual. When I woke this morning and realized through the blinding sunlight (still no real shades) that it was in fact Sunday and that I had someplace I looked forward to going to--I was happy. Excited even.
As I've become older the number of things that stir me to "excitement" dwindles. It's my consequence of aging. Experience loses its sheen. Not necessarily in my experience of it during, or even in my analysis of it after, but mainly in my imagining of it before. Either an event--let's say brunch, for example--becomes familiar enough that I believe I know it well enough that there is little novel reward to expect.
Plus there are always the bad things. When I go to brunch, there are myriad fears lurking--meeting new people if that's part of the agenda, having conversations with those new people which cause me to question the self-delusions I've crafted (those took so long to ferment--such a shame to see them erode away over some over-thought breakfast dish), getting in a life-threatening car accident on the way to such conversations, or even getting lost--which never makes you feel good about your ability to navigate life.
Add to this list the entirety of possibilities which I cannot imagine. Possibilities so remote, so dependent on other possibilities, that trying to imagine them would bring me closer to a paranoid fantasy than a rational thought-line. Still, without going into any details, I factor in the small possibility of these floating, amorphous bad things. (Understood, there is a flip-side, a possibility of unknown and unguessable good things that could happen. I could meet a new friend, find a lotto ticket, things like that. But this is not something that I realistically care about. An unknown fear is something rational to be dealt with, an unknown boost seems a non-consideration.)
All these potential bads, combined with the low-expectation of goods, keep most activities, familiar or not, on the no-thanks-maybe-some-other-time list. (This is a system of thought I often have to manually override. Simply because I know the list is getting too long. If the system had its way, I may, someday sooner than I might expect, be doing nothing at all.)
This whole line of consideration could be placed under the category of "depression and depressive thoughts." But I hate that category, mainly because of how socially contextually driven its existence is. I prefer to leave it out, or only mention it like so.
Which is all to say, maybe I'm feeling a bit "depressed" these days? Which in and of itself is a depressing thought (huh?). I mean, the fact that I can still feel depressed after having this life-frightening event is, well, I don't know. It means things are normal in the good and bad way. It means I'm not dying--yeah! It means I'm not dying, booh!
I still have to deal with the same old same old. Which is partially "depression" and that fact itself feels a bit "depressing."
But this morning, brunch excites me. Sure, I can explain this easily enough by the relatively near-death scare of a brain tumor and brain operation. (I've had brain surgery! Sometimes I still don't really believe it, despite the nine inch laceration that hides behind my new hair line.)
At breakfast: We sat and drank our coffee, while we waited for our beignets and potato cakes to be brought out to us. I cleaned up the coffee that spilled as the table wobbled. I kept looking around us--at each of our sides we were flanked by young families with a single child. The women were fairly attractive, and looked to be about my age. I imagined they still considered themselves sexual beings--as one girl bent over to lift up her son, I could see a full view of her breasts. She looked me in the eyes for a moment, and then back to the kid. She was not unpretty, and while her breasts were remarkable in their fullness, not much more about her stirred me. Still, I thought, women don't put on shirts without knowing how visible their bodies are in them. I imagined her and her husband at parties, drinking, flirting with each other or with other people. Where are the kids when this happens? Does this scene happen at all?
I began scribing a poem to her in my mind: To The Mother In The Blue Dress Barely Containing Your Breasts your face is not so pretty/ your husband has a pony tail/ you want me to fuck you. . . You don't want me/ you want someone you don't know at a brunch house to want to fuck you, because that means you're still doing something right.
I hadn't worked out the line breaks exactly.
"What are you thinking about?" Trudi asked.
"Nothing," I said, in my kid voice.
"Oh, bullshit," she said.
"You're bullshit," I said.
"Why don't you tell me what you're thinking."
"Because I don't know if I want to talk about it. It's nothing, it's just. . I was just noticing how young all these people with kids are."
"They're not really young."
"No, I know, they're not like, especially young or something. I guess they just felt like my age range or so--young like that."
"You're not thinking about having kids are you?"
"Fuck, no, well. . . shit." I said. I stared down into my coffee, and swirled the cup around. "Thanks for ruining it."
"What?"
"Eh, you know, when you're thinking about something but you don't realize you're actually thinking about it. And then when you realize it, it ruins the whole thing."
"Uh. . .not really. But is that what you were thinking about?"
"Well, sort-of, indirectly. I mean, I don't know, but it seems to make sense, I guess, from your perspective--"
"Oh, fuck you," Trudi said, laughing. She put her coffee down. "Me? What, and my ovaries?"
"Oh," I laughed. "That's not what I meant. I just meant, you know, anyone outside of me, how they would see it. But since you react that way, I guess that's something." I smirked, knowing this would burn enough to take the focus off me.
Trudi finished her last gulp of coffee. "I've been thinking about Mandy's kids," she said. "I never realized how much my brother and I learned from our parents. I mean, not so much factual stuff--"
"But how to think about the world." I said.
"Yeah. I guess I thought how we were brought up was how everyone was brought up. But I guess not."
"So you're doing the same thing?"
"What?"
"You're thinking about having kids too?"
"Ah, dammit!" she said.
"See what I mean? Ruins the whole thing."
"Yeah," Trudi said.
I'm seven years older than Trudi. It's something we've both been a little worried about--our difference in age handing us different desires re: children. Of course, there's this tumor thing now, too, which changes stuff. (A brain tumor will change you!)
My primary doc had told me the good news. After he had spoke to me for some long time about brain tumors, he left me alone in his office to go do something or other, I don't remember what. (Me standing there alone in his office feels like the first moment I had a tumor--not when I was told ten or fifteen minutes earlier, and not the first moment I actually had it-because when the hell was that exactly?--but the first moment, after having been told, where I was alone-that was when I first had it.) I stood in his office and looked at his photos. He had one child in the pictures. I thought about two things:
One: I hadn't finished my book. I wasn't angry about this. I didn't feel this was due to any lack of determination or personal integrity or work ethic (as I do right now). I was just busy with other life-things, was how I saw it.
Two: I didn't have a child. I was immediately aware that these two considerations were probably the same--the desire to leave something of myself behind. To feel like I changed the world in a concrete, visible way.
I wondered if I had time to have a kid. I was still completely ignorant of my real situation--I knew nothing of the pineal gland tumors and their treatableness. Unfortunately, neither did my doctor. So while he had tried to make me feel like there were plenty of treatment options, I only heard "brain tumor." Since my next door neighbor and ex-hook-up (same person) had died of a brain tumor and its cancerous origins, it seemed that "brain tumor" = "death." Not immediately, but eventually, after some painful and embarrassing months of "treatment."
But maybe I had a couple of years--who knew? If I did have a few years, I could have Trudi carry my child. I guessed that she would do that for me if I asked. Who could refuse that? I wondered if that would be fair to Trudi, or to this future child. Was this selfish or giving? What would their lives be like after I were gone? I imagined writing him endless letters, or making videos, or audio tapes. (Actually, all this would be digital. Much less fun.) I recalled a movie where a would-be father gets cancer and makes a cache of videos of life-lessons for his child.
The doctor returned. He told me more things about tumors and surgeries. I stopped fantasizing about having a child and started concerning myself with staying alive.
I told Trudi about it later that night at dinner--which, since it still was before I knew I had a better than good chance at living, was my own "last supper."
"I would, you know," she said between bites of thirty-dollar duck. I had hoped the duck was worth it. "If you wanted me to."
I nodded. I was happy to know this. But I didn't want to have a kid. I mean, I wasn't dying or anything.
Friday, May 21, 2010
Small good things.
Friday night. Lighting flashes the street outside the window. The thunder infuriates the dogs. They yip, growl, storm from the front of our shotgun house to the back with the hope of wrangling the thunder.
"I rock!" Trudi yells. We're both sitting Indian on our super-sized air mattress. Trudi's cradling a plastic guitar on her lap. "We earned a trophy," she says.
"For what?" I say.
"I really couldn't tell you," she says.
I have a Playstation 3, a fifty-inch plasma and Percoset. There was a time in my life when I considered such a combination the apex of existence. Now, it's a blessed respite.
I've played Guitar Hero once, drunkenly, at a friend's house on New Year's Eve. I never bought it because it was sort of pricey. This was certainly something I considered unessential. Now? All references point to a week ago. Hanging out in an ICU, watching the second hand tick towards the morphine. Holding statue-still, I desperately tried to maintain the seal of numbness--any breath, swallow, or blink leaked in such horrid sensations. So what's pricey?
I try to remember how bad I felt then, how I wasn't sure if the pain would ever go away. I want to hold on to my desperation, my disbelief in the relentlessness of that suffering. Those moments feel too distant. I'm losing something; I can't place what. The last time I felt any serious pain was days ago. I can bend full from the waist to the floor, pick things up without having to stop and take those frightened depressurizing breaths. It's all been too easy to forget.
We meet with the doctors Friday, but I don't want to think about procedures, percentages, recoveries. I want to yell at my dogs for barking at the rain. I want to eat Percocet and watch Trudi score high on Duran Duran's Hungry like the Wolf.
I don't want these moments to end, but I must continuously breathe in their frailty.
"I rock!" Trudi yells. We're both sitting Indian on our super-sized air mattress. Trudi's cradling a plastic guitar on her lap. "We earned a trophy," she says.
"For what?" I say.
"I really couldn't tell you," she says.
I have a Playstation 3, a fifty-inch plasma and Percoset. There was a time in my life when I considered such a combination the apex of existence. Now, it's a blessed respite.
I've played Guitar Hero once, drunkenly, at a friend's house on New Year's Eve. I never bought it because it was sort of pricey. This was certainly something I considered unessential. Now? All references point to a week ago. Hanging out in an ICU, watching the second hand tick towards the morphine. Holding statue-still, I desperately tried to maintain the seal of numbness--any breath, swallow, or blink leaked in such horrid sensations. So what's pricey?
I try to remember how bad I felt then, how I wasn't sure if the pain would ever go away. I want to hold on to my desperation, my disbelief in the relentlessness of that suffering. Those moments feel too distant. I'm losing something; I can't place what. The last time I felt any serious pain was days ago. I can bend full from the waist to the floor, pick things up without having to stop and take those frightened depressurizing breaths. It's all been too easy to forget.
We meet with the doctors Friday, but I don't want to think about procedures, percentages, recoveries. I want to yell at my dogs for barking at the rain. I want to eat Percocet and watch Trudi score high on Duran Duran's Hungry like the Wolf.
I don't want these moments to end, but I must continuously breathe in their frailty.
Thursday, May 20, 2010
A Brain Tumor Will Not Change You
It's hard to believe its been a week since I had my first brain surgery. I saw some video of me, just before I went in, a bit doped up and talking to Trudi. I have this sneaking, bad feeling that I'm gathering some last moments before I die. It's hard to block out morbid thoughts like this--it's like the water that builds up around my foundation when we get hit with a Lousiville rain flash--it always finds its way in.
In the video I joked about how the doctors kept coming in and asking me who the president was every ten minutes. Where am I? They asked me. Who is the president? "Was this a red-state or what?" I asked Trudi. "I can't tell if they're pissed about this or not. Are they blaming me? Are they expecting an apology? Or are they waiting for the fucker to be impeached? Tell them not to ask me anymore."
I wasn't trying to be funny. I was just trying to say whatever things in my mind that I could. I wanted to use my brain in whatever way it would work, and I didn't care what came out of it. Cause for the first time I was afraid I might not get to use it anymore. If they said, what's two plus two-I would have said four but four plus four is eight, so there's four, there's eight, and then there's sixteen--so which were you interested in again?
It's all becoming normal now, though. I keep coming back to the same conversation Trudi and I had in the car just before we got the results. A brain tumor will change you--a brain tumor will not change you. It's two in the morning, and things are the same. I have a bottle of Percocets that I can keep taking. What's the point though? My eyes start flipping out and I can't write and I feel too numb to even notice I'm feeling good. But it's so easy just to pop one, to pop one, but when I don't?
Everything just slows down. Everything is just normal. I have a brain tumor, but I haven't changed, and that is just depressing. I've hit the bad news lotto here, and I'm supposed to get something in return--magic. I'm guaranteed a magic life, a magic sequence of events. That's why they make movies about this stuff and write books about it. It's un-boring. Right?
Well, it started that way. I thought I was going to die, and things started flying real quick. The hospital, the surgery, parental visitations. All these things were way, way out of the norm. And hard not to feel special just then.
But now I'm home. I'm writing and anxious about it and how is that new? I still struggle in the same ways--I'm tired of my voice, tired of having nothing to say, tired of my jealousy, tired of my desire for recognition. When will I transcend all that? Isn't that what brain tumors are for? To gift me some magic writing power? To make everything I think and write suddenly miraculous and instantly everyone should care what I think? So when does that start?
I'm going to take a perc now.
Sometime during the first week, Trudi said, "Good--now you have an excuse to get rid of that editor voice in your head and just write."
"What?" I said. This was madness. "Are you crazy? I can't do that." Indeed, that little editor demon took some speed. His balls are on fire and he won't let a single word, a single connotation pass. (I never said he was particularly smart--he makes lots of errors, especially technical stuff. It's not my fault, this barrage of errors you may find here. Clearly, sue him.)
But tonight? I've passed him a rouffie. I have no intention of fondling him, don't worry. But I might kick him.
My head scar is itchy. I want to pull off the dead skin and eat it.
I was afraid of going back in for open skull surgery. Now I want it. I want open skull, I want chemo, radiation. I want them to make me as sick as they can. I want to be laid out on the table. I do not know why I want this. I probably only want it right now at two am. Ask me tomorrow and I'll tell them all to fuck off.
Why do I want this? Because I want what I've always wanted--to feel special. (A brain tumor will not change you.) Tumors are pretty special. Chemo is special. Open skull surgery is special. The pain, is beyond special. I'm afraid of it. I hate pain. I'm a pain pussy.
In the video I joked about how the doctors kept coming in and asking me who the president was every ten minutes. Where am I? They asked me. Who is the president? "Was this a red-state or what?" I asked Trudi. "I can't tell if they're pissed about this or not. Are they blaming me? Are they expecting an apology? Or are they waiting for the fucker to be impeached? Tell them not to ask me anymore."
I wasn't trying to be funny. I was just trying to say whatever things in my mind that I could. I wanted to use my brain in whatever way it would work, and I didn't care what came out of it. Cause for the first time I was afraid I might not get to use it anymore. If they said, what's two plus two-I would have said four but four plus four is eight, so there's four, there's eight, and then there's sixteen--so which were you interested in again?
It's all becoming normal now, though. I keep coming back to the same conversation Trudi and I had in the car just before we got the results. A brain tumor will change you--a brain tumor will not change you. It's two in the morning, and things are the same. I have a bottle of Percocets that I can keep taking. What's the point though? My eyes start flipping out and I can't write and I feel too numb to even notice I'm feeling good. But it's so easy just to pop one, to pop one, but when I don't?
Everything just slows down. Everything is just normal. I have a brain tumor, but I haven't changed, and that is just depressing. I've hit the bad news lotto here, and I'm supposed to get something in return--magic. I'm guaranteed a magic life, a magic sequence of events. That's why they make movies about this stuff and write books about it. It's un-boring. Right?
Well, it started that way. I thought I was going to die, and things started flying real quick. The hospital, the surgery, parental visitations. All these things were way, way out of the norm. And hard not to feel special just then.
But now I'm home. I'm writing and anxious about it and how is that new? I still struggle in the same ways--I'm tired of my voice, tired of having nothing to say, tired of my jealousy, tired of my desire for recognition. When will I transcend all that? Isn't that what brain tumors are for? To gift me some magic writing power? To make everything I think and write suddenly miraculous and instantly everyone should care what I think? So when does that start?
I'm going to take a perc now.
Sometime during the first week, Trudi said, "Good--now you have an excuse to get rid of that editor voice in your head and just write."
"What?" I said. This was madness. "Are you crazy? I can't do that." Indeed, that little editor demon took some speed. His balls are on fire and he won't let a single word, a single connotation pass. (I never said he was particularly smart--he makes lots of errors, especially technical stuff. It's not my fault, this barrage of errors you may find here. Clearly, sue him.)
But tonight? I've passed him a rouffie. I have no intention of fondling him, don't worry. But I might kick him.
My head scar is itchy. I want to pull off the dead skin and eat it.
I was afraid of going back in for open skull surgery. Now I want it. I want open skull, I want chemo, radiation. I want them to make me as sick as they can. I want to be laid out on the table. I do not know why I want this. I probably only want it right now at two am. Ask me tomorrow and I'll tell them all to fuck off.
Why do I want this? Because I want what I've always wanted--to feel special. (A brain tumor will not change you.) Tumors are pretty special. Chemo is special. Open skull surgery is special. The pain, is beyond special. I'm afraid of it. I hate pain. I'm a pain pussy.
Wednesday, May 19, 2010
Moms and mornings
These days the dogs disappear in the mornings.
"Bums?" I say, fumbling around the blankets.
"Where are they?" Trudi says, her eyes still shut. I smooth my fingertips across her forehead which is damp with bedsweat.
"Upstairs," I say. I can hear their muffled sounds down the hall, the echoes of my mother and the dogs, her voice and footfalls and their jingling dog-chains.
I like the way my mother talks to the dogs. She's always trying to reason with them. "Shoe, slow down. We're going. Have patience! No. Now, Dido, you listen, Dido, or we're not going anywhere. Don't you be aggressive. That doesn't work with me." She gets very serious with the dogs. They really like this; you should see their tails go wild when she does.
"No," she yells, trying to be stern. "Daddy may let you get away with that, but not me. You don't eat that off the ground. Put that down." I close my eyes and smile. It is very easy for me to fall back to sleep like this; It warms me more than I can say.
I am not used to my mother's voice--in real life--anymore. I'm used to it being confined to the small and distant end of a cellphone connection. This voice in the phone is something that usually keeps me from whatever it is I am doing at that moment. Yes,mom. Good to talk to you too, Mom. Miss you too, Mom. Talk to you later, Mom.
But I can't say this feels new exactly. My mother's voice, rising and falling in the distance while putting me to sleep is an age-old scene. It recalls very small times to me. Not only not-yet a man, but not even close. Like an infant that has not yet developed a full-bone skull, the boy I used-to-be was raw, delicate, and vulnerable to any design and impression, benign or otherwise. I can see myself in my single digit ages, protected chiefly by my mother's oft-overwhelming love and attention, and more often than not, too frightened to speak.
As I lie in bed this morning, I breathe in this version of myself which now feels lifetimes away. I doze, and keep one arm locked around Trudi's waist. When I wake, the dogs have been walked, and I feel well. "Want me to cook breakfast?" my mother says. I smile, and feel very strong.
"Bums?" I say, fumbling around the blankets.
"Where are they?" Trudi says, her eyes still shut. I smooth my fingertips across her forehead which is damp with bedsweat.
"Upstairs," I say. I can hear their muffled sounds down the hall, the echoes of my mother and the dogs, her voice and footfalls and their jingling dog-chains.
I like the way my mother talks to the dogs. She's always trying to reason with them. "Shoe, slow down. We're going. Have patience! No. Now, Dido, you listen, Dido, or we're not going anywhere. Don't you be aggressive. That doesn't work with me." She gets very serious with the dogs. They really like this; you should see their tails go wild when she does.
"No," she yells, trying to be stern. "Daddy may let you get away with that, but not me. You don't eat that off the ground. Put that down." I close my eyes and smile. It is very easy for me to fall back to sleep like this; It warms me more than I can say.
I am not used to my mother's voice--in real life--anymore. I'm used to it being confined to the small and distant end of a cellphone connection. This voice in the phone is something that usually keeps me from whatever it is I am doing at that moment. Yes,mom. Good to talk to you too, Mom. Miss you too, Mom. Talk to you later, Mom.
But I can't say this feels new exactly. My mother's voice, rising and falling in the distance while putting me to sleep is an age-old scene. It recalls very small times to me. Not only not-yet a man, but not even close. Like an infant that has not yet developed a full-bone skull, the boy I used-to-be was raw, delicate, and vulnerable to any design and impression, benign or otherwise. I can see myself in my single digit ages, protected chiefly by my mother's oft-overwhelming love and attention, and more often than not, too frightened to speak.
As I lie in bed this morning, I breathe in this version of myself which now feels lifetimes away. I doze, and keep one arm locked around Trudi's waist. When I wake, the dogs have been walked, and I feel well. "Want me to cook breakfast?" my mother says. I smile, and feel very strong.
Tuesday, May 18, 2010
Saturday Night
Saturday night at the hospital, just past midnight. Back in my younger, druggier days, it was a time of night I was very fond of, the excitable and delicate hours between twelve and three. Early: you still had a rational grasp on your debauchery. Late: the exhausted and disappointing end of the day compelled you to find a place dark enough in deed and decor to mask your sickness. Lately, however, I find Trudi and I endure our worst moments in these hours.
"Where do you want me to sleep?" Trudi asks. We are sitting up in a hospital bed. There is an open recliner next to us.
"I don't know, honey." I say. The recliner looks horrendous. It's thin and has wooden arms to hold while the body slides forward.
I'm dying for a little space. I want to write, and I don't want to feel like Trudi's reading over my shoulder. Mostly, she never does, but when she's so close, it still feels that way. Regardless of that, there's the body heat, which I have no taste for right now. There isn't enough air in here as it is. My limbs get tight in any position I'm in for more than a few seconds, so I have to keep shifting, then she must keep shifting, and this is more shifting than I can deal with right now.
But I don't want her to feel like I'm pushing her away. I think about how this must all be for her. Trudi, unlike me, is naturally inclined to worry. (She blames me, partially, for this. It is her opinion that someone must worry, and since I don't, it's always left up to her. I am not naive; there is some truth to this view. Still, she's had plenty of practice worrying before I came along.) These days have provided endless matters, large and small, to fret over. Doctors, families, brain surgeries. This is the third time today I've stopped in the middle of this chaos and tried to track everything Trudi must be going through because of my tumor, but I cannot. I get two seconds into the thought line, and then something else happens, a test here, my parents there.
"Where do you want to sleep?" I say.
Trudi looks at the recliner, then back to me. She starts to cry.
"Trudi," I say, placing my hands on her shoulder. "Listen--listen. You can't let this change the whole tenets of our relationship. I'm not dying. You can still want what you want."
It's been this kind of evening.
"Do you want to be alone?" she says.
"Do I? No, I don't know . . . Do you?" I think, maybe for a little while. Just to have some space.
I feel this is an em-pass that will be difficult to navigate. I look at the recliner sheepishly. I feel bad I cannot just tell her to sleep there. This situation has all been about me. The more I leave things up to her, forcing her to decide when to be generous or when to take what she needs, the more pressure she'll be under. But being strong-willed requires strength, which, since the surgery, has been drained out of me as steadily as the Kool-aid colored sac of cerebrospinal fluid hanging over my head.
"What do you need, Frank?" Trudi says.
I think about that word. Alone. I imagine being really alone in this room. If Trudi were not in my life. . . we've had some difficult moments in the last year; we have spoken about the possibility of ending things. How would we separate our lives? Our furniture? Our dogs? Those issues didn't resolve so much as settle and smooth over. Simpler times came; things did not stay so dire. It turned out to be us imagining worst case scenarios that didn't come to pass.
I can't go there now, I decide. Too much pressure. “Nothing,” I say, calling on some place inside me that is still untouched by the whirlwind panic of these last days. “Everything's fine.” The matter-of-factness I manage surprises me.
She sighs. "It's alright," she says and moves over to the recliner. I stare at my computer as she tries to get comfortable. Finally she settles in, finishes by setting a white hospital blanket over her head. I stare at her like that for a moment, and the ridiculousness of this sight almost makes me laugh—but I stay quiet.
We sit like this with the lights on, me trying to write through a Percocet high that is coming on strong and making me feel sweaty and fast; her trying to fight back tears so as not to disturb me. It's not the prettiest snapshot of our relationship. Every now and again I hear her sob. I pause, consider, then ask her if she is alright. I'm not sure how much we just need some space. Or maybe I'm being cold. It seems every moment is fraught with this question. How can I tell the difference at one thirty in the morning in a hospital room?
My eyes roll, and close a bit as I stare at the same sentence on the screen for some time. How long have I been sitting like this? Did I fall asleep sitting up?
"Baby?" I say. "Baby, you up?"
Trudi grunts under the blanket.
"Come to bed," I say, closing my computer, making room for her in the bed.
Trudi pulls the blanket over her head. She is worn down. I worry she is shivering, but she is holding quite still.
"Where do you want me to sleep?" Trudi asks. We are sitting up in a hospital bed. There is an open recliner next to us.
"I don't know, honey." I say. The recliner looks horrendous. It's thin and has wooden arms to hold while the body slides forward.
I'm dying for a little space. I want to write, and I don't want to feel like Trudi's reading over my shoulder. Mostly, she never does, but when she's so close, it still feels that way. Regardless of that, there's the body heat, which I have no taste for right now. There isn't enough air in here as it is. My limbs get tight in any position I'm in for more than a few seconds, so I have to keep shifting, then she must keep shifting, and this is more shifting than I can deal with right now.
But I don't want her to feel like I'm pushing her away. I think about how this must all be for her. Trudi, unlike me, is naturally inclined to worry. (She blames me, partially, for this. It is her opinion that someone must worry, and since I don't, it's always left up to her. I am not naive; there is some truth to this view. Still, she's had plenty of practice worrying before I came along.) These days have provided endless matters, large and small, to fret over. Doctors, families, brain surgeries. This is the third time today I've stopped in the middle of this chaos and tried to track everything Trudi must be going through because of my tumor, but I cannot. I get two seconds into the thought line, and then something else happens, a test here, my parents there.
"Where do you want to sleep?" I say.
Trudi looks at the recliner, then back to me. She starts to cry.
"Trudi," I say, placing my hands on her shoulder. "Listen--listen. You can't let this change the whole tenets of our relationship. I'm not dying. You can still want what you want."
It's been this kind of evening.
"Do you want to be alone?" she says.
"Do I? No, I don't know . . . Do you?" I think, maybe for a little while. Just to have some space.
I feel this is an em-pass that will be difficult to navigate. I look at the recliner sheepishly. I feel bad I cannot just tell her to sleep there. This situation has all been about me. The more I leave things up to her, forcing her to decide when to be generous or when to take what she needs, the more pressure she'll be under. But being strong-willed requires strength, which, since the surgery, has been drained out of me as steadily as the Kool-aid colored sac of cerebrospinal fluid hanging over my head.
"What do you need, Frank?" Trudi says.
I think about that word. Alone. I imagine being really alone in this room. If Trudi were not in my life. . . we've had some difficult moments in the last year; we have spoken about the possibility of ending things. How would we separate our lives? Our furniture? Our dogs? Those issues didn't resolve so much as settle and smooth over. Simpler times came; things did not stay so dire. It turned out to be us imagining worst case scenarios that didn't come to pass.
I can't go there now, I decide. Too much pressure. “Nothing,” I say, calling on some place inside me that is still untouched by the whirlwind panic of these last days. “Everything's fine.” The matter-of-factness I manage surprises me.
She sighs. "It's alright," she says and moves over to the recliner. I stare at my computer as she tries to get comfortable. Finally she settles in, finishes by setting a white hospital blanket over her head. I stare at her like that for a moment, and the ridiculousness of this sight almost makes me laugh—but I stay quiet.
We sit like this with the lights on, me trying to write through a Percocet high that is coming on strong and making me feel sweaty and fast; her trying to fight back tears so as not to disturb me. It's not the prettiest snapshot of our relationship. Every now and again I hear her sob. I pause, consider, then ask her if she is alright. I'm not sure how much we just need some space. Or maybe I'm being cold. It seems every moment is fraught with this question. How can I tell the difference at one thirty in the morning in a hospital room?
My eyes roll, and close a bit as I stare at the same sentence on the screen for some time. How long have I been sitting like this? Did I fall asleep sitting up?
"Baby?" I say. "Baby, you up?"
Trudi grunts under the blanket.
"Come to bed," I say, closing my computer, making room for her in the bed.
Trudi pulls the blanket over her head. She is worn down. I worry she is shivering, but she is holding quite still.
Sunday, May 16, 2010
Home Again
Sunday afternoon. I lie on my air mattress in my living room, curled into a ball. I am in my new home. My head swims softly; it is not unpleasant. I have not taken any pain medication for some hours--I am trying to stay lucid. ("Jesus," I told Trudi last night. "I must be sick. I just refused Percocet.") Now I float on the air mattress and feel mostly fine. "Why don't you take this upstairs first, Camille," Trudi says to my mother gently. "Then I can pull out all these rugs and vacuum."
"OK," my mom says. "I'll get the rest of the stuff from the car first."
Rugged are unfurled and vacuumed; boxes are emptied and then thrown away; clothes are folded and organized. I fall asleep to this song, not deeply, but easily.
It is strange enough that this tumor business is happening at all, but its happening in the middle of our city relocation and house renovation is something else indeed.
We were just about finished with our kitchen tiles and were about to move on to painting. After the painting, the carpets would get ripped up, and then, the refinishing of the hardwood floors. Landscaping, furniture--we'd figured we'd do piecemeal. Six to eight more weeks of work, till we were . . .well, not done exactly--we have been told incessantly that houses are never really done--but mostly livable.
Of course, tumors intervene. Rafael, sweetly, offered to help with cleaning up the house as much as possible while we were in the hospital. Separately, Trudi's father wanted to give us a tangible gift, and asked--thoughtfully--if it would be okay if he were to hire Rafael to continue to work on the house, at least to get it where we could have a reasonably clean and bright place to recover.
So during the days I spent at the hospital, Rafael and his crew finished much of the work.
Living in the house had been like camping---albeit with a/c and hot water--in a construction site. We had our one 'green room' as I called it, furnished with a large air mattress gifted by my mother, a mini-fridge I acquired through the graces of internet bulletin boards, and a reconditioned old table. The rest of the house was either in a state of decay or growth: plaster, wood trim, new doors, buckets of joint compound (mixed or not), half-ripped up carpets with fleur-de-lis imprints, tools of all sizes, toolboxes, work lamps, saw dust, concrete dust, buckets, lights, tiles, fixtures old and new, nails and screws and sheets of drywall pasted with layers of wallpaper from various decades. Everywhere you looked something was being ripped out or something was being placed in or else it was a tool to do either with.
At the same time, another friend of Trudi's family, who has dealt with her share of health scares, bought us our refrigerator, which we picked out the Monday before surgery and had delivered while my head was being mini-scoped on Thursday.
So my return today was one of exhaustion and gratitude and relief and promise.
It is something I cannot fully place, this feeling of safety, of love provided so seamlessly by those around us. It feels coordinated. My house itself represents--in its state-of-being, in its process of coming to renewal--this showering of warmth and unity. And while this warmth was evident before any magnetic image surfaced, while perhaps we all knew that we cared for each other enough that we would take remarkable actions to make each other feel even a tiny bit better, it took the emergence of some awful thing to bring that goodness into reality.
But I cannot tell you how incredible it is to live inside it. I have received a far greater gift that I could have ever realized I needed: I get to see, everywhere I turn, the absolute proof of the world's compassion.
"OK," my mom says. "I'll get the rest of the stuff from the car first."
Rugged are unfurled and vacuumed; boxes are emptied and then thrown away; clothes are folded and organized. I fall asleep to this song, not deeply, but easily.
It is strange enough that this tumor business is happening at all, but its happening in the middle of our city relocation and house renovation is something else indeed.
We were just about finished with our kitchen tiles and were about to move on to painting. After the painting, the carpets would get ripped up, and then, the refinishing of the hardwood floors. Landscaping, furniture--we'd figured we'd do piecemeal. Six to eight more weeks of work, till we were . . .well, not done exactly--we have been told incessantly that houses are never really done--but mostly livable.
Of course, tumors intervene. Rafael, sweetly, offered to help with cleaning up the house as much as possible while we were in the hospital. Separately, Trudi's father wanted to give us a tangible gift, and asked--thoughtfully--if it would be okay if he were to hire Rafael to continue to work on the house, at least to get it where we could have a reasonably clean and bright place to recover.
So during the days I spent at the hospital, Rafael and his crew finished much of the work.
Living in the house had been like camping---albeit with a/c and hot water--in a construction site. We had our one 'green room' as I called it, furnished with a large air mattress gifted by my mother, a mini-fridge I acquired through the graces of internet bulletin boards, and a reconditioned old table. The rest of the house was either in a state of decay or growth: plaster, wood trim, new doors, buckets of joint compound (mixed or not), half-ripped up carpets with fleur-de-lis imprints, tools of all sizes, toolboxes, work lamps, saw dust, concrete dust, buckets, lights, tiles, fixtures old and new, nails and screws and sheets of drywall pasted with layers of wallpaper from various decades. Everywhere you looked something was being ripped out or something was being placed in or else it was a tool to do either with.
At the same time, another friend of Trudi's family, who has dealt with her share of health scares, bought us our refrigerator, which we picked out the Monday before surgery and had delivered while my head was being mini-scoped on Thursday.
So my return today was one of exhaustion and gratitude and relief and promise.
It is something I cannot fully place, this feeling of safety, of love provided so seamlessly by those around us. It feels coordinated. My house itself represents--in its state-of-being, in its process of coming to renewal--this showering of warmth and unity. And while this warmth was evident before any magnetic image surfaced, while perhaps we all knew that we cared for each other enough that we would take remarkable actions to make each other feel even a tiny bit better, it took the emergence of some awful thing to bring that goodness into reality.
But I cannot tell you how incredible it is to live inside it. I have received a far greater gift that I could have ever realized I needed: I get to see, everywhere I turn, the absolute proof of the world's compassion.
Saturday, May 15, 2010
The upswing
It's 8pm on a Saturday. Yesterday I stood for the first time. Today I walked up and down a flight of stairs. The nausea is gone. The headaches are minor. I have no cognitive malfunctions. Everything feels wonderful because I do not feel horrible. It's negative positivism, but it's working well enough for me.
The good started at around four this morning. That was when the morphine wore off. As I felt the warmth dissipating in my veins, I braced myself for the slow and creeping head nastiness that usually returned an hour after the injection. But it didn't. I checked the clock twice. It was almost three hours after my last morphine, and I felt no pain. It occurred to me maybe, just maybe, I was getting better. That was enough to make me feel better still.
I walk around a lot now, and I like to make small talk with the nurses. I try to be pleasant without being abnormally so. I don't want people to see me as weak. Nor do I want to be seen as a cliche of a impossibly optimistic cancer-fighting patient. (Last night on the phone my father said, 'you're gonna keep fighting this kid,' and it was so tv movie of the week it made me a little nauseous. I feel like a terrible person for writing this. This is a consequence of going to grad school for writing--every thought is up for evaluation, no matter how personal. You might think I'd try to give myself a break. But since I'm writing my way through this, I can't.
The good started at around four this morning. That was when the morphine wore off. As I felt the warmth dissipating in my veins, I braced myself for the slow and creeping head nastiness that usually returned an hour after the injection. But it didn't. I checked the clock twice. It was almost three hours after my last morphine, and I felt no pain. It occurred to me maybe, just maybe, I was getting better. That was enough to make me feel better still.
I walk around a lot now, and I like to make small talk with the nurses. I try to be pleasant without being abnormally so. I don't want people to see me as weak. Nor do I want to be seen as a cliche of a impossibly optimistic cancer-fighting patient. (Last night on the phone my father said, 'you're gonna keep fighting this kid,' and it was so tv movie of the week it made me a little nauseous. I feel like a terrible person for writing this. This is a consequence of going to grad school for writing--every thought is up for evaluation, no matter how personal. You might think I'd try to give myself a break. But since I'm writing my way through this, I can't.
A time line to date, II
April 17th: I go to see a neurologist, who gives me an EEG and a clean bill of health.
Apr 26th: I go to see a Primary car doc, just to get a check up. He dismisses the EEG, orders an MRI.
Saturday, May 1st: I get my MRI. It makes funny noises that I mostly enjoy.
Monday, May 3rd: Results come back. I am told I have a growth, and will likely need surgery. Referred to Neurosurgeon, Dr. Wayne Villanueva at the Neurological institute of Kentucky.
Tuesday, May 4th, 8:30 am: Go to see Villanueva. He is careful and precise. Trudi and I like him very much. He recommends endoscopic surgery as a first step to deal with the hydrocephalus and to get a biopsy. He refers us to another surgeon at the institute who specializes in endoscopy.
Same day, 1:30 pm: We go to downtown Louisville to meet Dr. Todd Vitaz. He is brief and under some time constraint. He schedules us for surgery the following morning.
4:30: We decide this is too fast and postpone the surgery.
May 5-12th: Both my parents come in, with my Aunt Marianne. We spend the week eating, relaxing, and adjusting to the fact that I have a brain tumor.
May 13th, 2010: Endoscopic surgery at Norton Hospital to get biopsy and drain CSF. Slam dunk.
Waiting for biopsy.
Apr 26th: I go to see a Primary car doc, just to get a check up. He dismisses the EEG, orders an MRI.
Saturday, May 1st: I get my MRI. It makes funny noises that I mostly enjoy.
Monday, May 3rd: Results come back. I am told I have a growth, and will likely need surgery. Referred to Neurosurgeon, Dr. Wayne Villanueva at the Neurological institute of Kentucky.
Tuesday, May 4th, 8:30 am: Go to see Villanueva. He is careful and precise. Trudi and I like him very much. He recommends endoscopic surgery as a first step to deal with the hydrocephalus and to get a biopsy. He refers us to another surgeon at the institute who specializes in endoscopy.
Same day, 1:30 pm: We go to downtown Louisville to meet Dr. Todd Vitaz. He is brief and under some time constraint. He schedules us for surgery the following morning.
4:30: We decide this is too fast and postpone the surgery.
May 5-12th: Both my parents come in, with my Aunt Marianne. We spend the week eating, relaxing, and adjusting to the fact that I have a brain tumor.
May 13th, 2010: Endoscopic surgery at Norton Hospital to get biopsy and drain CSF. Slam dunk.
Waiting for biopsy.
Friday, May 14, 2010
first night
I'm siting up in the Intensive Care Unit, awkwardly clacking away at my laptop. It's the first time I've been "up" since the surgery. I am not a pretty picture: I have an iv plugged into the back of each of my hands. There's a white wire with a red light taped around my pointer finger. I have name tags on each wrist, and a red blood id tag. I can barely find the keyboard past the mass of wires that surround my wrists. Am I more android or Frankenstein? A long incision runs across my forehead, and a thin tube leads out of my head and fills a plastic sac with violet fluid that looks uncomfortably like kool-aid. That's my CSF, and there's so much drained out--it's hard to imagine that football-sized sac of fluid fitting into my skull.
My eyes work against me; they are tired and want the dark. Though keeping myself up is hard, I want to get back to writing as soon as possible.
I cannot organize my thoughts well, but there are some moments from the last days that stick with me.
One am, Friday, May 14th:
I begin to lose my ability to deal with the suffering. The medication is wearing off. My head throbs and spasms from inside. It seems there are fault lines along my skull, where i can feel pressure erupting from inside. Trudi sits next to me in the bed, and feeds me tiny ice shards from a spoon. The coolness on my lips masks the pain until the ice melts. I try not to swallow because even a drop wracks me with nausea. When we pause for a moment, I am a desert again.
I have a catheter in me and I'm dying to piss, but cannot. My hands and legs begin to go numb. It's what happens to me when I have panic attacks. I try to relax by closing my eyes and taking a deep breath, but with my eyes closed the pins and needle sensation only feels more overwhelming. I think, I can't, I can't take this anymore, but I know that's a bad path. I have to, I say out loud. I can take it. Yes, you can, Trudi echos, and I'm a little embarrassed.
Trudi looks for anyway to make me feel better. Can I rub your legs? she says. More ice? "Nothing," I say, "no." I look up at the wall, where there's a little blue booklet in a plastic holder that says, "Welcome."
"I don't want this to be real," I say. I choke down tears. "This can't really be happening." Trudi strokes my back. "Ok, baby," she coos. "It's okay."
I was not prepared for this amount of pain. Throughout this whole week--I had not bothered to ask, "why me?" The answer was simple. There is no "why." "Why" is because life isn't perfect, and bodies don't always work right. Because I didn't feel sorry for myself right away, I thought dealing with this was going to be easier than I expected.
(to be cont.)
My eyes work against me; they are tired and want the dark. Though keeping myself up is hard, I want to get back to writing as soon as possible.
I cannot organize my thoughts well, but there are some moments from the last days that stick with me.
One am, Friday, May 14th:
I begin to lose my ability to deal with the suffering. The medication is wearing off. My head throbs and spasms from inside. It seems there are fault lines along my skull, where i can feel pressure erupting from inside. Trudi sits next to me in the bed, and feeds me tiny ice shards from a spoon. The coolness on my lips masks the pain until the ice melts. I try not to swallow because even a drop wracks me with nausea. When we pause for a moment, I am a desert again.
I have a catheter in me and I'm dying to piss, but cannot. My hands and legs begin to go numb. It's what happens to me when I have panic attacks. I try to relax by closing my eyes and taking a deep breath, but with my eyes closed the pins and needle sensation only feels more overwhelming. I think, I can't, I can't take this anymore, but I know that's a bad path. I have to, I say out loud. I can take it. Yes, you can, Trudi echos, and I'm a little embarrassed.
Trudi looks for anyway to make me feel better. Can I rub your legs? she says. More ice? "Nothing," I say, "no." I look up at the wall, where there's a little blue booklet in a plastic holder that says, "Welcome."
"I don't want this to be real," I say. I choke down tears. "This can't really be happening." Trudi strokes my back. "Ok, baby," she coos. "It's okay."
I was not prepared for this amount of pain. Throughout this whole week--I had not bothered to ask, "why me?" The answer was simple. There is no "why." "Why" is because life isn't perfect, and bodies don't always work right. Because I didn't feel sorry for myself right away, I thought dealing with this was going to be easier than I expected.
(to be cont.)
Wednesday, May 12, 2010
Good night.
NOTE FROM TRUDI: This posting has been cut short, because Frank was whisked away to the pre-op MRI. We got to the hospital at 5:30. Surgery -apparently- starts at 11 or 12, and is set to go for around 4 or 5 hours, with a couple of hours in post-op and several days in the hospital under observation. Before he was wheeled off, Frank asked me post this for him. I know how deeply, deeply he has valued the fact that people have been following along with him in this experience. Thank you all, and we'll keep it up.
My head is aching, softly, all around the back of my skull. It has been for a few hours. It isn't anything to worry about. After all, I just had dinner with both my parents and we argued about our politics, a discussion which could hardly have been more polarized and inane. I'm surprised I didn't have a seizure.
I feel confident that the worst scenario will not happen again. I am confident I will land in that 98 percent safe area. Why shouldn't I be? It's 49 times more likely than not. Yet as I'm writing this, I'm musing. . .what if. What if the two percent rules out, and this lousy blog post is the last coherent thing I offer up to the world. This is a morbid line of thought, and forgive me for going there. Perhaps I should just not go there, for my sake and everyone else's. I mean, it's silly, right? It's so damn. . . unlikely.
That's the farthest away I can keep the big-dark-scary right now: "unlikely." I'd prefer it unfathomable, impossible, absurd, uncanny, historical, unexplainable. But it's not. It's simply, "unlikely."
Let me try to embrace that fear. Flip that 98 green to 98 red. What could I say to make feel better about leaving this life tomorrow afternoon?
I might tell my parents I love and forgive them, though I was never able to forgive them nearly much as I would have liked. I would have liked to understand them better.
I am sorry for hurting people. Most of this category falls to ex-lovers. What greater way is there to hurt someone then to sleep with them for a long time? I'm being flip. It's because I'm finishing this post in the hospital, in one of those silly little gowns. The pain I've caused others always stays with me, even after they have moved on.
(We are interrupted again--I have written out a actual will, and there is a chaplain here who is going to notarize that for me. So much precaution we take for this mist of death around us. But it makes me feel more grounded in life, still.
While we wait for Trudi to track down my power of attorney forms and living will, we talk. He's a very round and well groomed man--white beard, white hair. He tells me he's on call. He tells me the children are the worst, he had one this morning, he said. He is not solemn, but plain, and it feels honest. Then he tells me he used to be a corrections officer. I say, "Well, you certainly have found yourself in places where you see some difficult human experience." "Well, yes," he said. Their was a hint of pride, but it seemed it wasn't part of some plan for him. His voice and attitude had a habit of ease. This was just where he wound up, "funny, no?" was what his face said. I wanted to ask him why he thought he wound up in places where people were about to die, did before this in places where their lives were confined by bars and rules. And why do I care?
Cute girls in hospital garb are constantly approaching me.
"Hi, I'm Kathy."
"Hi Kathy--you have a metal object in your hand."
"I do. But the good part is I just put it in your ear."
My head is aching, softly, all around the back of my skull. It has been for a few hours. It isn't anything to worry about. After all, I just had dinner with both my parents and we argued about our politics, a discussion which could hardly have been more polarized and inane. I'm surprised I didn't have a seizure.
I feel confident that the worst scenario will not happen again. I am confident I will land in that 98 percent safe area. Why shouldn't I be? It's 49 times more likely than not. Yet as I'm writing this, I'm musing. . .what if. What if the two percent rules out, and this lousy blog post is the last coherent thing I offer up to the world. This is a morbid line of thought, and forgive me for going there. Perhaps I should just not go there, for my sake and everyone else's. I mean, it's silly, right? It's so damn. . . unlikely.
That's the farthest away I can keep the big-dark-scary right now: "unlikely." I'd prefer it unfathomable, impossible, absurd, uncanny, historical, unexplainable. But it's not. It's simply, "unlikely."
Let me try to embrace that fear. Flip that 98 green to 98 red. What could I say to make feel better about leaving this life tomorrow afternoon?
I might tell my parents I love and forgive them, though I was never able to forgive them nearly much as I would have liked. I would have liked to understand them better.
I am sorry for hurting people. Most of this category falls to ex-lovers. What greater way is there to hurt someone then to sleep with them for a long time? I'm being flip. It's because I'm finishing this post in the hospital, in one of those silly little gowns. The pain I've caused others always stays with me, even after they have moved on.
(We are interrupted again--I have written out a actual will, and there is a chaplain here who is going to notarize that for me. So much precaution we take for this mist of death around us. But it makes me feel more grounded in life, still.
While we wait for Trudi to track down my power of attorney forms and living will, we talk. He's a very round and well groomed man--white beard, white hair. He tells me he's on call. He tells me the children are the worst, he had one this morning, he said. He is not solemn, but plain, and it feels honest. Then he tells me he used to be a corrections officer. I say, "Well, you certainly have found yourself in places where you see some difficult human experience." "Well, yes," he said. Their was a hint of pride, but it seemed it wasn't part of some plan for him. His voice and attitude had a habit of ease. This was just where he wound up, "funny, no?" was what his face said. I wanted to ask him why he thought he wound up in places where people were about to die, did before this in places where their lives were confined by bars and rules. And why do I care?
Cute girls in hospital garb are constantly approaching me.
"Hi, I'm Kathy."
"Hi Kathy--you have a metal object in your hand."
"I do. But the good part is I just put it in your ear."
How to worry
Monday, May 3rd, 2010.
Laying tile: days of tape-measuring, table-sawing ceramic squares into triangles, egg-beating thinset mortar in a five gallon drum, leveling. We've gotten better at this business, but we're sick of it. Everyday we push and pull at these cream tiles, trying to make the joints precise and all the angles perfect.
Since it is our first time, everything takes longer. Tiles laid once have to be set a second time. Concrete has to be chipped off the cement board because we forget to clear it while it is wet. Now we worry the joints--we have left too much concrete in them. The grout will not set well if we leave things like this. Or so we've read. We're trying to do everything by the book--a tile book.
So Trudi and I have been on our knees all morning, each armed with an orange-handled chisel and a hammer. We bang and scrape, scrape and bang. My laptop plays some music we can hardly hear under the shrill clangs of the hammers that make my ears ring lightly but steadily. The dogs watch us from the doorway for a few minutes, but soon they are bored and walk off to the front room to rest.
We don't talk much except to offer little tricks we painstaking discover along the way. "Forget the razor," I say. "It's better with just the chisel."
"Yeah, I found that too," Trudi says. "I'm just working in a line." I look back at her, and feel good--we've come to the same method separately, and feel assured by our mutual discovery.
"Call again," Trudi says after a long silence.
I have forgotten about the test results, losing myself in the rhythmic thumping of the hammers. I lean back, and give my aching back a rest.
"They said they're getting the results later today," I say. I rub the edge of the chisel as I speak, using my nail to clear away scraps of concrete. "I'm sure they'll call when they get them."
"Call them, Frank. This way they know you're waiting and they'll call you back as soon as they come in."
I am bothered by her pushing. This is a personal issue--the years I lived with my father and step-mother often drove me to madness. Their son, my half-brother, fell out of a high chair when he was a baby. Since that day, the two of them have lived in perpetual panic. I was not in their lives at the time of the accident, and so was did not experience the trauma directly, as they did. To them, Everything is an emergency. I grew to detest their panic. While I empathized with their anxiety, I couldn't help but find it needlessly dramatic. So for me, nothing is an emergency. I deny worry unilaterally.
I examine Trudi's logic for a flaw, so I can prove her wrong. But once I think about it, I realize two things--one, she is right about them calling me back sooner. And two, she's much more worried about this test than I am. Getting the results right away will be doing her a big favor, and wouldn't really cost me anything. I swallow, take a breath. "Ok," I say as I dial the office, and only after I start dialing do I realize that I am more worried about this than I've been letting on.
The message my doctor leaves on my voicemail is awkward.
"He really is new," I say to Trudi after listening to it.
"What makes you say that?" she says.
"His message. He was like, 'So, I got your test results, and uh, well, you can call me, and then we can, yeah, talk.' You know, very start and stop. It's like he doesn't know the protocol for doctor-patient messages." I found this to be cute, and sort of sweet. The doctor had told me when we met that he was new to the office and didn't have a lot of patients there yet.
"Interesting," Trudi says.
It's not until the doctor calls me back a bit later and tells me to come into his office that I begin to ask questions.
"It's a bit weird, right? Him asking me to come in today?"
Trudi shrugs, but the redness about her face belies her attempt at nonchalance.
"Whatever," I say. "I'm sure it's fine," and we both go back to chipping away at the concrete.
I drive to the Doctor's office. Trudi is gnawing away at her fingers. I take her hand and pull it from her mouth, place it in her lap. "Sorry," she says.
My cell phone rings--it is Trudi's mother, Penelope.
"It's a bit weird, his asking me to come in," I say.
"It's totally normal," she says. "You know, no doctors will give results over the phone."
"Yeah, you're right," I say, but it occurs to me that I have no idea if this is true. Then I think--if it isn't true, Penelope is probably not misinformed about this. She's trying to make me feel better. It's the first hint of what's to come, of what it's like to be the sick one: People behave towards you how they think you need them to. Even when it is the best way, you know it, and all the caring duplicity can make you feel very isolated.
"That was your mom," I tell Trudi. "She says it's normal, that doctors don't like to discuss results on the phone." I say this confidently, and Trudi nods, reassured by her mother's factualness. We both nod and try to focus on this.
We drive on for a while, not speaking, listening to NPR tell us about the mammoth dome they're building in the gulf to prevent oil from killing everything in sight. Trudi turns the radio off.
"I have to say something. Nothing that happens in there will change how I feel about you. Nothing they tell you will cause me to not want to be with you." She puts her hand on my shoulder. Nothing."
"I know, I know," I say, pushing her hand off me. "I'm sure it's fine," I say, and pat her hand onto her thigh, then give it a squeeze.
"I know," she says. "I just want you to know that."
I look out the window. It occurs to me, again, how wonderfully lush Kentucky is. We've been living in the south western and Californian desert for so long, the green of Louisville spring feels Eden-like.
"It's weird, though," I say. "It's one of those moments where everything can change."
"I think that's wrong. I think it's a common mistake people make, about these types of things. That somehow you become a different person because of being diagnosed with an illness. No matter what they tell us, you're still the same person."
"I know what you're saying. But it would change you. If I go in there and they tell me I'm going to die or something--how could that not change me? All experiences changes us. Everything changes us, every moment. Especially something as dramatic as, you know, near-death stuff."
"Well, yes, I know that," she says. "It's just not going to change who you really are."
This is a common trajectory for our conversations--we start off in the real world, and fly away into philosophical fancy, getting more abstract, and often landing in the same disagreement we took off from. This conversation is still mostly theoretical. Just another opportunity for us to bounce our views of the world off each other.
but as I play out this scenario, this is as serious as I imagine it. Trudi and I would imagine our worst case scenario for a little while, have our little death-fantasy, try to learn something about it. Then we would go inside, get the results, and we would find out--as one always does--that their worst fear was nothing more than that--a fear. This conversation would stay an abstraction, and we could go back to happily worrying about our tile, about our dogs, about getting the rest of the house in living order. We could laugh at our silly fears, and maybe find ourselves closer together for it.
I think about this car ride a lot these days.
Laying tile: days of tape-measuring, table-sawing ceramic squares into triangles, egg-beating thinset mortar in a five gallon drum, leveling. We've gotten better at this business, but we're sick of it. Everyday we push and pull at these cream tiles, trying to make the joints precise and all the angles perfect.
Since it is our first time, everything takes longer. Tiles laid once have to be set a second time. Concrete has to be chipped off the cement board because we forget to clear it while it is wet. Now we worry the joints--we have left too much concrete in them. The grout will not set well if we leave things like this. Or so we've read. We're trying to do everything by the book--a tile book.
So Trudi and I have been on our knees all morning, each armed with an orange-handled chisel and a hammer. We bang and scrape, scrape and bang. My laptop plays some music we can hardly hear under the shrill clangs of the hammers that make my ears ring lightly but steadily. The dogs watch us from the doorway for a few minutes, but soon they are bored and walk off to the front room to rest.
We don't talk much except to offer little tricks we painstaking discover along the way. "Forget the razor," I say. "It's better with just the chisel."
"Yeah, I found that too," Trudi says. "I'm just working in a line." I look back at her, and feel good--we've come to the same method separately, and feel assured by our mutual discovery.
"Call again," Trudi says after a long silence.
I have forgotten about the test results, losing myself in the rhythmic thumping of the hammers. I lean back, and give my aching back a rest.
"They said they're getting the results later today," I say. I rub the edge of the chisel as I speak, using my nail to clear away scraps of concrete. "I'm sure they'll call when they get them."
"Call them, Frank. This way they know you're waiting and they'll call you back as soon as they come in."
I am bothered by her pushing. This is a personal issue--the years I lived with my father and step-mother often drove me to madness. Their son, my half-brother, fell out of a high chair when he was a baby. Since that day, the two of them have lived in perpetual panic. I was not in their lives at the time of the accident, and so was did not experience the trauma directly, as they did. To them, Everything is an emergency. I grew to detest their panic. While I empathized with their anxiety, I couldn't help but find it needlessly dramatic. So for me, nothing is an emergency. I deny worry unilaterally.
I examine Trudi's logic for a flaw, so I can prove her wrong. But once I think about it, I realize two things--one, she is right about them calling me back sooner. And two, she's much more worried about this test than I am. Getting the results right away will be doing her a big favor, and wouldn't really cost me anything. I swallow, take a breath. "Ok," I say as I dial the office, and only after I start dialing do I realize that I am more worried about this than I've been letting on.
The message my doctor leaves on my voicemail is awkward.
"He really is new," I say to Trudi after listening to it.
"What makes you say that?" she says.
"His message. He was like, 'So, I got your test results, and uh, well, you can call me, and then we can, yeah, talk.' You know, very start and stop. It's like he doesn't know the protocol for doctor-patient messages." I found this to be cute, and sort of sweet. The doctor had told me when we met that he was new to the office and didn't have a lot of patients there yet.
"Interesting," Trudi says.
It's not until the doctor calls me back a bit later and tells me to come into his office that I begin to ask questions.
"It's a bit weird, right? Him asking me to come in today?"
Trudi shrugs, but the redness about her face belies her attempt at nonchalance.
"Whatever," I say. "I'm sure it's fine," and we both go back to chipping away at the concrete.
I drive to the Doctor's office. Trudi is gnawing away at her fingers. I take her hand and pull it from her mouth, place it in her lap. "Sorry," she says.
My cell phone rings--it is Trudi's mother, Penelope.
"It's a bit weird, his asking me to come in," I say.
"It's totally normal," she says. "You know, no doctors will give results over the phone."
"Yeah, you're right," I say, but it occurs to me that I have no idea if this is true. Then I think--if it isn't true, Penelope is probably not misinformed about this. She's trying to make me feel better. It's the first hint of what's to come, of what it's like to be the sick one: People behave towards you how they think you need them to. Even when it is the best way, you know it, and all the caring duplicity can make you feel very isolated.
"That was your mom," I tell Trudi. "She says it's normal, that doctors don't like to discuss results on the phone." I say this confidently, and Trudi nods, reassured by her mother's factualness. We both nod and try to focus on this.
We drive on for a while, not speaking, listening to NPR tell us about the mammoth dome they're building in the gulf to prevent oil from killing everything in sight. Trudi turns the radio off.
"I have to say something. Nothing that happens in there will change how I feel about you. Nothing they tell you will cause me to not want to be with you." She puts her hand on my shoulder. Nothing."
"I know, I know," I say, pushing her hand off me. "I'm sure it's fine," I say, and pat her hand onto her thigh, then give it a squeeze.
"I know," she says. "I just want you to know that."
I look out the window. It occurs to me, again, how wonderfully lush Kentucky is. We've been living in the south western and Californian desert for so long, the green of Louisville spring feels Eden-like.
"It's weird, though," I say. "It's one of those moments where everything can change."
"I think that's wrong. I think it's a common mistake people make, about these types of things. That somehow you become a different person because of being diagnosed with an illness. No matter what they tell us, you're still the same person."
"I know what you're saying. But it would change you. If I go in there and they tell me I'm going to die or something--how could that not change me? All experiences changes us. Everything changes us, every moment. Especially something as dramatic as, you know, near-death stuff."
"Well, yes, I know that," she says. "It's just not going to change who you really are."
This is a common trajectory for our conversations--we start off in the real world, and fly away into philosophical fancy, getting more abstract, and often landing in the same disagreement we took off from. This conversation is still mostly theoretical. Just another opportunity for us to bounce our views of the world off each other.
but as I play out this scenario, this is as serious as I imagine it. Trudi and I would imagine our worst case scenario for a little while, have our little death-fantasy, try to learn something about it. Then we would go inside, get the results, and we would find out--as one always does--that their worst fear was nothing more than that--a fear. This conversation would stay an abstraction, and we could go back to happily worrying about our tile, about our dogs, about getting the rest of the house in living order. We could laugh at our silly fears, and maybe find ourselves closer together for it.
I think about this car ride a lot these days.
Tuesday, May 11, 2010
Phone call
Things are feeling very fast to me now.
10:30 am Tuesday.
I was in the middle of writing when I got a call asking me to confirm an MRI appointment on Thursday. Since I have to have one of those before the surgery, I assumed they were scheduling me then.
"Am I scheduled for surgery?" I asked.
"I do see an endoscopy," the voice said.
"For what time?"
"Well, it doesn't say. But the MRI is for eight, so you need to be here earlier.
"When?"
"Let me put you through to scheduling."
After being on hold for a few moments, I enjoyed some awkward dialogue with the next female I was connected to: "Yes, I'm scheduled--I mean, I think I'm scheduled for surgery--actually, I trying to find out if i am, or not-scheduled--yet. Or for what time. I mean I'm scheduled for an MRI, so i assumed. . .
"Call your doctor," she finally said.
"I need the number," I said to Trudi. "You have my wallet? The card's in there."
"I don't see it," Trudi said as she unloaded the contents of my small zip wallet.
"Shit," I said. "I couldn't find it yesterday. I lost the card. Goddammit."
"We're going to have to look it up- you want me to do it?"
"No no," I said, and the annoyance in my voice surprised me. I have been handling things in stride until this point. But it's all beginning to feel wobbly. My voice just isn't right. I am trying to hide it, to suppress it, to keep moving ahead rationally.
But I feel very porous. Things keep invading my space. All morning, it was knocks on the door for the house--Rafael and the painters came, but I asked him to give me some time to write and have quiet. Then the plumber came to fix the hot water issue. I have been glad we have been keeping things moving with the house; it's helped to me look ahead-to remind myself in the most concrete and practical ways that there will be a future. But this morning it felt like I was surrounded, and just as I finally got to sit and write, bam, the call about an MRI. I shouldn't have gotten that call--the schedule isn't confirmed yet because they're waiting on insurance confirmation. Needless confusion and angst. But it doesn't matter.
Trudi walked over, stood over where I was lying in the bed with my laptop. She held out her palm with two little pills.
"I want you to take these," she said.
"what's that?" but I knew they were her anxiety pills.
"Xanax and Klonopin. You're getting too upset, it's not good for you. You need to relax."
I took a second before i spoke.
"I'm fine," I said. "I just need some time to sit and write. If I have that, I'll be fine."
Trudi made her bullshit face. "You've had two hours--"
"No I haven't," I said, my voice getting louder. "It's been the plumbing, Rafeal, picking paint this morning--I just sat down to write at ten--it hasn't even been forty minutes." I could picture it, the peace I am sometimes able to feel when I can really write something, when I can access some piece of information, some idea, some feeling that I couldn't access before I sat down. That's all I want.
I need to try to get it without the drugs. It could be a remnant of my drug history, my fear that I am running away from life and into chemicals. Sometimes that fear can do me harm, and this could be one of those moments--where I make myself needlessly suffer. But I am afraid of being wiped out. I'm afraid killing the anxiety will kill the experience. I don't want to miss out on anything right now.
"Look, here's what we'll do, I said. "The doctor gave me that script for Adavan. Go fill that for me, it's not as strong as the Xanax. Get me those, and I'll take a half--"
"take a whole."
"I"ll take a half and if it doesn't work in a hour or so I'll take another one, okay?"
"Okay."
I went back to writing. Before Trudi left, I told her I was sorry if I got snippy with her.
"It's ok," she said, calmly, though her voice was more tired than warm. "It doesn't matter."
10:30 am Tuesday.
I was in the middle of writing when I got a call asking me to confirm an MRI appointment on Thursday. Since I have to have one of those before the surgery, I assumed they were scheduling me then.
"Am I scheduled for surgery?" I asked.
"I do see an endoscopy," the voice said.
"For what time?"
"Well, it doesn't say. But the MRI is for eight, so you need to be here earlier.
"When?"
"Let me put you through to scheduling."
After being on hold for a few moments, I enjoyed some awkward dialogue with the next female I was connected to: "Yes, I'm scheduled--I mean, I think I'm scheduled for surgery--actually, I trying to find out if i am, or not-scheduled--yet. Or for what time. I mean I'm scheduled for an MRI, so i assumed. . .
"Call your doctor," she finally said.
"I need the number," I said to Trudi. "You have my wallet? The card's in there."
"I don't see it," Trudi said as she unloaded the contents of my small zip wallet.
"Shit," I said. "I couldn't find it yesterday. I lost the card. Goddammit."
"We're going to have to look it up- you want me to do it?"
"No no," I said, and the annoyance in my voice surprised me. I have been handling things in stride until this point. But it's all beginning to feel wobbly. My voice just isn't right. I am trying to hide it, to suppress it, to keep moving ahead rationally.
But I feel very porous. Things keep invading my space. All morning, it was knocks on the door for the house--Rafael and the painters came, but I asked him to give me some time to write and have quiet. Then the plumber came to fix the hot water issue. I have been glad we have been keeping things moving with the house; it's helped to me look ahead-to remind myself in the most concrete and practical ways that there will be a future. But this morning it felt like I was surrounded, and just as I finally got to sit and write, bam, the call about an MRI. I shouldn't have gotten that call--the schedule isn't confirmed yet because they're waiting on insurance confirmation. Needless confusion and angst. But it doesn't matter.
Trudi walked over, stood over where I was lying in the bed with my laptop. She held out her palm with two little pills.
"I want you to take these," she said.
"what's that?" but I knew they were her anxiety pills.
"Xanax and Klonopin. You're getting too upset, it's not good for you. You need to relax."
I took a second before i spoke.
"I'm fine," I said. "I just need some time to sit and write. If I have that, I'll be fine."
Trudi made her bullshit face. "You've had two hours--"
"No I haven't," I said, my voice getting louder. "It's been the plumbing, Rafeal, picking paint this morning--I just sat down to write at ten--it hasn't even been forty minutes." I could picture it, the peace I am sometimes able to feel when I can really write something, when I can access some piece of information, some idea, some feeling that I couldn't access before I sat down. That's all I want.
I need to try to get it without the drugs. It could be a remnant of my drug history, my fear that I am running away from life and into chemicals. Sometimes that fear can do me harm, and this could be one of those moments--where I make myself needlessly suffer. But I am afraid of being wiped out. I'm afraid killing the anxiety will kill the experience. I don't want to miss out on anything right now.
"Look, here's what we'll do, I said. "The doctor gave me that script for Adavan. Go fill that for me, it's not as strong as the Xanax. Get me those, and I'll take a half--"
"take a whole."
"I"ll take a half and if it doesn't work in a hour or so I'll take another one, okay?"
"Okay."
I went back to writing. Before Trudi left, I told her I was sorry if I got snippy with her.
"It's ok," she said, calmly, though her voice was more tired than warm. "It doesn't matter."
Monday, May 10, 2010
waiting. . .
Went to the neuro-center today. Basically nothing new, just went over a lot of the same stuff, just in more detail. I did find out why they are drilling two holes in my head--the first is for the the endoscope to reach the ventricle to create the drain, the second is to access the tumor. Also, I learned the scope is a rigid object. For some reason, I had it in my mind as it being snake-like. Instead, it is a solid hollow tube into which they can insert whichever tool they need at that time--a light, a grabby hand thing (like the kind park cleaners or old people use, I imagine), a suction tool. The doc told me there were around ten or eleven, all told.
I tried to find out as much about his plan as I could. But he basically explained he had to play it as it laid--once he got in there and got a look at the inside of my head, that would dictate what he would do. So I imagine him as a jazz guitarist- a lot of improvising. It's a bit scary, this freestyle surgery.
Vitaz is not exactly a people person. He doesn't look me in the eye when he speaks. He often speaks to me with his eyes closed. But I'm confident now--after plenty of vetting--that he is an excellent surgeon. So who gives a shit about his ability to make me feel good about him. What matters is how good he is at getting a piece of this tumor so we can best figure out what to do next.
So we're trying to schedule the surgery soon. I was hoping tommorrow, but obviously that's not happening. It's also looking like Wednesday won't happen either. I expect to find out more tomorrow.
My father is arriving tonight. He hasn't flown in, I don't know, maybe 35 years. he didn't even have an id. He had to today go to DMV, get a temp id, get an ok from the airline that that would be ok, then booked a flight. He was very nervous about having to change flights. He was very nervous about the whole thing, really.
I hope having my father here will be more of a help than a hindrance. I worry he'll need attention, and I don't have the time or ability to give it right now.
Gotta run. I do not have enough time to write.
I tried to find out as much about his plan as I could. But he basically explained he had to play it as it laid--once he got in there and got a look at the inside of my head, that would dictate what he would do. So I imagine him as a jazz guitarist- a lot of improvising. It's a bit scary, this freestyle surgery.
Vitaz is not exactly a people person. He doesn't look me in the eye when he speaks. He often speaks to me with his eyes closed. But I'm confident now--after plenty of vetting--that he is an excellent surgeon. So who gives a shit about his ability to make me feel good about him. What matters is how good he is at getting a piece of this tumor so we can best figure out what to do next.
So we're trying to schedule the surgery soon. I was hoping tommorrow, but obviously that's not happening. It's also looking like Wednesday won't happen either. I expect to find out more tomorrow.
My father is arriving tonight. He hasn't flown in, I don't know, maybe 35 years. he didn't even have an id. He had to today go to DMV, get a temp id, get an ok from the airline that that would be ok, then booked a flight. He was very nervous about having to change flights. He was very nervous about the whole thing, really.
I hope having my father here will be more of a help than a hindrance. I worry he'll need attention, and I don't have the time or ability to give it right now.
Gotta run. I do not have enough time to write.
Friday, May 7, 2010
the technical view of a Pineal Gland Brain Tumor (a what gland?)
Here's what I know about this tumor.
I have a rare disease! Pineal gland tumors total less than 1 percent of all brain tumors. I always wanted to be special. Luckily for me, it's rare in a good way. I believe it to be more treatable than most brain tumors.
First thing I found out was that the word "tumor" itself comes from "tumescence"--to swell. Up till now, this has always been a desirable thing for men. We take pills to have it; now it's fuck all to get rid of it.
It's not enormous, but it's quite large. 3cm around. Ish. I've referred to it as the golf ball in my head.
This tumor is sitting on a little something called a pineal gland. (Pronounced either PIE-knee-ul or PIN-e-ul.) This gland creates melatonin, but no one really knows for sure what that stuff does. It might help with sleep cycles. It's not clear.
For me, the gland's purpose is to play host to mass of cells I clearly do not need. If I personified them, they'd be party crashers, drinking up my brain booze and clogging up my toilets. If I technofied the tumor, I imagine a possessed xerox machine. My cells are copying themselves endlessly. Either they think they are helping--they think other cells have died and they're honorably taking their places--or they are simply in open revolt.
Perhaps it's a misunderstanding. Mass mis-communication. I would like to talk to them if I could. But at this point, it just may make things worse.
So this tumor sits smack in the middle of my head. When the neurosurgeon first showed me an MRI image of it, I said, "Is it possible for it to be more in the middle of my brain?"
He pointed at a spot an half inch over. "Well, it could. . ." Then he laughed. "No," he said. "I guess not. Yeah. It's pretty much in the middle."
Such audacity! To insinuate yourself into a delicate space where you are clearly not wanted and where you do not belong. This tumor has earned my respect far more than my anger or fear.
The radiologist report said the tumor was "well-marginated," which made me recall all my old workshop manuscripts with corrections or "+" 's all across them. But the radiologist meant the tumor was very smooth and even. Such sense of order--perhaps it's British. This is not a wild prison break, each one breaking off in their own direction. No, these cells are a collective. They're Marxist cells. Perhaps this has been affecting my politics all along?
Really, and this is silly, but I feel proud of my organized cells. They are really like me-you should see my finances. I love tax time. Seriously. I have little folders I keep and when I finish packing them up I run my hand across their covers, lovingly. Everything in its right place, at least sometimes. I like this kinship between me and my tumor.
I talk about my tumor's smoothness on the phone to whichever random friend I haven't spoken to in years is calling me at that moment. "It's grown so evenly," I say. "You should see the pictures."
These cells have respect for uniformity. I believe in finding a personal philosophy and shaping your life according to that philosophy. If you see these cells, man, it's clear they have a vision and they are sticking to it. So many admirable qualities, these cells.
Of course they do complicate things. Remember that clogged toilet metaphor? It's actually quite appropriate. Next to this Pineal gland is the narrow tube that connects some ventricular sacs to my lovely and slightly curved spine. The sacs hold cerebrospinal fluid which--in the overly-literal and latin way of medical terms-- travels from my brain to my spine. It bathes my brain in a nice warm fluid, and provides some nutrients to my back. The tumor has clogged the tube.
It's basically a plumbing issue. The fluid builds up faster than it drips down, and my ventricles keep getting a little bigger and a little bigger to hold more fluid. So there's pressure. That's where the pain stirs when I bend over or strain, or, much more annoyingly, laugh too hard.
My horizontal MRI looks like I have two bananas in my brain. Those are two of my ventricular sacs. They should look more like grapes.
The doctors all think this has been growing for years. They think this because of the size of those bananas. Between them and the golf ball, my head is rather crowded. Stuff is pressing on every part of brain. If I were a pinball machine, we'd be breaking all the high scores.
"Well," one doctor said to me over the phone after looking at my MRI. "You don't sound incoherent." I am expected to be so. I should have double vision. I should be falling over, my limbs shaking involuntarily. The fact that I am not tells them that this has been happening slowly, a bit here, a bit there. My brain has been adapting for years. I'm a bit proud of that too. I am sick, but remarkably well.
So here's what's going to happen. First we have endoscopic surgery. Endoscopy, "to look inside"--once again, those damn literal medical terms--because, it's a mini camera. At this rate, they should just call it a look-insidey machine.
It's a tubular camera armed with a tiny light and, I imagine, a super tiny little knife. They will make two incisions in the front right of my head. (Why two, I failed to ask.) Then the tube goes in, and works it's way into the ventricular sacs. Once there, they will puncture a little hole in the sacs, so that the fluid will drip down, around the tumor, and eventually wend its way into my spine, where it belongs. Blood can complicate things--if I bleed too much, it will block the camera, and the surgeon will be working half blind. Sometimes they have to--for lack of a better term--pull out.
This puncture method beats the hell out of the old way they fixed this, which was to put a shunt--a long plastic tube that would run all the fucking way from my brain to my stomach. There is a small chance--10 to 15 percent, I am told--that this new drain will fail. It can swell up or scar over time. At that point they have to go ahead and make new holes and put a the shunt in anyway, just as a precaution. Brain surgery, small or large, will always linger on the horizon.
After the drain is created, the second order of business is to get a sample of this fucker. The tumor, I mean. There are 15 types of Pineal gland tumors. Most fall into two major categories, of course. Benign or malignant. Oddly, in my case, you want it to be mildly cancerous. Because the mild cancer is very receptive to radiation--like a 90 percent cure rate. So no open brain surgery.
But if it's benign, well, it has to come out. And that would mean a journey to the center of my skull. For that, I'd probably want to find the magic Pineal gland center of the world, if such a thing exists.
My first neurosurgeon felt very confident my tumor was the good cancer kind. My second felt equally assured that it was benign. I guess I'll call it a coin flip.
I have a rare disease! Pineal gland tumors total less than 1 percent of all brain tumors. I always wanted to be special. Luckily for me, it's rare in a good way. I believe it to be more treatable than most brain tumors.
First thing I found out was that the word "tumor" itself comes from "tumescence"--to swell. Up till now, this has always been a desirable thing for men. We take pills to have it; now it's fuck all to get rid of it.
It's not enormous, but it's quite large. 3cm around. Ish. I've referred to it as the golf ball in my head.
This tumor is sitting on a little something called a pineal gland. (Pronounced either PIE-knee-ul or PIN-e-ul.) This gland creates melatonin, but no one really knows for sure what that stuff does. It might help with sleep cycles. It's not clear.
For me, the gland's purpose is to play host to mass of cells I clearly do not need. If I personified them, they'd be party crashers, drinking up my brain booze and clogging up my toilets. If I technofied the tumor, I imagine a possessed xerox machine. My cells are copying themselves endlessly. Either they think they are helping--they think other cells have died and they're honorably taking their places--or they are simply in open revolt.
Perhaps it's a misunderstanding. Mass mis-communication. I would like to talk to them if I could. But at this point, it just may make things worse.
So this tumor sits smack in the middle of my head. When the neurosurgeon first showed me an MRI image of it, I said, "Is it possible for it to be more in the middle of my brain?"
He pointed at a spot an half inch over. "Well, it could. . ." Then he laughed. "No," he said. "I guess not. Yeah. It's pretty much in the middle."
Such audacity! To insinuate yourself into a delicate space where you are clearly not wanted and where you do not belong. This tumor has earned my respect far more than my anger or fear.
The radiologist report said the tumor was "well-marginated," which made me recall all my old workshop manuscripts with corrections or "+" 's all across them. But the radiologist meant the tumor was very smooth and even. Such sense of order--perhaps it's British. This is not a wild prison break, each one breaking off in their own direction. No, these cells are a collective. They're Marxist cells. Perhaps this has been affecting my politics all along?
Really, and this is silly, but I feel proud of my organized cells. They are really like me-you should see my finances. I love tax time. Seriously. I have little folders I keep and when I finish packing them up I run my hand across their covers, lovingly. Everything in its right place, at least sometimes. I like this kinship between me and my tumor.
I talk about my tumor's smoothness on the phone to whichever random friend I haven't spoken to in years is calling me at that moment. "It's grown so evenly," I say. "You should see the pictures."
These cells have respect for uniformity. I believe in finding a personal philosophy and shaping your life according to that philosophy. If you see these cells, man, it's clear they have a vision and they are sticking to it. So many admirable qualities, these cells.
Of course they do complicate things. Remember that clogged toilet metaphor? It's actually quite appropriate. Next to this Pineal gland is the narrow tube that connects some ventricular sacs to my lovely and slightly curved spine. The sacs hold cerebrospinal fluid which--in the overly-literal and latin way of medical terms-- travels from my brain to my spine. It bathes my brain in a nice warm fluid, and provides some nutrients to my back. The tumor has clogged the tube.
It's basically a plumbing issue. The fluid builds up faster than it drips down, and my ventricles keep getting a little bigger and a little bigger to hold more fluid. So there's pressure. That's where the pain stirs when I bend over or strain, or, much more annoyingly, laugh too hard.
My horizontal MRI looks like I have two bananas in my brain. Those are two of my ventricular sacs. They should look more like grapes.
The doctors all think this has been growing for years. They think this because of the size of those bananas. Between them and the golf ball, my head is rather crowded. Stuff is pressing on every part of brain. If I were a pinball machine, we'd be breaking all the high scores.
"Well," one doctor said to me over the phone after looking at my MRI. "You don't sound incoherent." I am expected to be so. I should have double vision. I should be falling over, my limbs shaking involuntarily. The fact that I am not tells them that this has been happening slowly, a bit here, a bit there. My brain has been adapting for years. I'm a bit proud of that too. I am sick, but remarkably well.
So here's what's going to happen. First we have endoscopic surgery. Endoscopy, "to look inside"--once again, those damn literal medical terms--because, it's a mini camera. At this rate, they should just call it a look-insidey machine.
It's a tubular camera armed with a tiny light and, I imagine, a super tiny little knife. They will make two incisions in the front right of my head. (Why two, I failed to ask.) Then the tube goes in, and works it's way into the ventricular sacs. Once there, they will puncture a little hole in the sacs, so that the fluid will drip down, around the tumor, and eventually wend its way into my spine, where it belongs. Blood can complicate things--if I bleed too much, it will block the camera, and the surgeon will be working half blind. Sometimes they have to--for lack of a better term--pull out.
This puncture method beats the hell out of the old way they fixed this, which was to put a shunt--a long plastic tube that would run all the fucking way from my brain to my stomach. There is a small chance--10 to 15 percent, I am told--that this new drain will fail. It can swell up or scar over time. At that point they have to go ahead and make new holes and put a the shunt in anyway, just as a precaution. Brain surgery, small or large, will always linger on the horizon.
After the drain is created, the second order of business is to get a sample of this fucker. The tumor, I mean. There are 15 types of Pineal gland tumors. Most fall into two major categories, of course. Benign or malignant. Oddly, in my case, you want it to be mildly cancerous. Because the mild cancer is very receptive to radiation--like a 90 percent cure rate. So no open brain surgery.
But if it's benign, well, it has to come out. And that would mean a journey to the center of my skull. For that, I'd probably want to find the magic Pineal gland center of the world, if such a thing exists.
My first neurosurgeon felt very confident my tumor was the good cancer kind. My second felt equally assured that it was benign. I guess I'll call it a coin flip.
A New Day
It is Wednesday morning. The sun is barely up, shining through the front window which is covered in a thin red shawl. The shawl serves as a make-shift blind in our make-shift bedroom. It casts everything in magenta. Trudi's leg is lying against mine, and her breath is warm against my face. I'm lying on my side, with my hands tucked into the cool folds of my pillow. There is the steady and soft whooshing of traffic outside. The dogs stir, yawn, climb up from under the covers. I feel one curl against my chest and sigh deeply. Everything feels massively peaceful.
The morning's dreams float away; thin clouds of faces and shapes scudding off. The word "tumor" drifts above me, barely a wisp. I expect it to fade away, like the other dreams. Just another fragment that will become lost, that had meaning just moments ago but now is nothing but a unintelligible sliver of a reality that no longer matters.
All at once, I wake rapidly. I sit up on my elbows, and look at Trudi's face--she's asleep and quite still. The dogs are tired, but their eyes are open, watching me, ready as always for their walk.
I am awake now, and the that word, tumor, is stubborn. It settles in me, on top of me. It covers me. Suddenly, all the memories of the previous day come back. The first neurosurgeon, the second, the procession of pre-op tests, all those phone calls to our parents.
I close my eyes. Just five more minutes, I think. Just five more minutes. But I know it's time to start the day.
The morning's dreams float away; thin clouds of faces and shapes scudding off. The word "tumor" drifts above me, barely a wisp. I expect it to fade away, like the other dreams. Just another fragment that will become lost, that had meaning just moments ago but now is nothing but a unintelligible sliver of a reality that no longer matters.
All at once, I wake rapidly. I sit up on my elbows, and look at Trudi's face--she's asleep and quite still. The dogs are tired, but their eyes are open, watching me, ready as always for their walk.
I am awake now, and the that word, tumor, is stubborn. It settles in me, on top of me. It covers me. Suddenly, all the memories of the previous day come back. The first neurosurgeon, the second, the procession of pre-op tests, all those phone calls to our parents.
I close my eyes. Just five more minutes, I think. Just five more minutes. But I know it's time to start the day.
Thursday, May 6, 2010
Wills
It was Tuesday, shortly after we had hastily agreed to have surgery the following morning. We were dazed, shuffling along the pre-op test conveyor belt--x-ray to blood test to other samplings I do not recall. I had just successfully peed into a small cup(after downing a mediocre cup of hospital coffee just to make that happen) and placed my urine in a funny little panel in the bathroom wall.
"I just don't want to be in a position where I am unable to do what I need to do to help you," Trudi said as we headed towards the next stage, not clear at all where that was.
Trudi has only asked me for this one favor through all of this. She wants fill out whatever legal document that would give her the power to make any medical calls necessary if I become incapable of doing so myself--a small, but definite possibility.
"Why?" I said. I was angry. "I can't think about this now," I said, as I walked off in the direction of the elevator, leaving her a few paces behind. It was the first time I'd snapped at her in all of this. I heard her take a short tight breath, so I stopped to face her. She looked at me with that face she makes--it's red and sad and a little contorted. It means I've hurt her, but she understands I didn't mean it to hurt her. She's trying to be rational, to not take it personally, to not react, to know there are bigger things going on than her feelings. That's why her face gets like that. That's hard for anyone, and I feel bad for putting her through all this. She nods, and squeezes out a pained smile. We walk off toward the elevator together.
Still, I felt bothered by the idea. I had much more pressing things to think about. The question of whether to "pull a plug" or not meant nothing. Coma, sleep, and death were the same. I would not be conscious. If there was some kind of afterlife, or next life, or portal to another existence (which is how I prefer to think of it, if I'm trying to be positive) then that would be the first thing I would experience. For me, it would be a near timeless transition to either a miraculous recovery or to the next life, or, equally likely, to nothing at all.
I realize now in this writing that this was a selfish line of thinking. Yes, to me it does not matter. (Barring the miraculous recovery part). But to others it would matter. How would my loved ones live out their days with their son, boyfriend, sibling, or friend, breathing away mindlessly in some sanitary and lonely room? How would that feel to them, to always have me hanging there, not dead, not alive? Why would I rob them of the relief of my death? For what? A tiny chance that there might be some miracle?
I have been known to enjoy myself some gambling from time to time, (money comes and goes fast at a Vegas craps table) and I have always been good at calculating odds. You always have to maximize the risks and rewards if you want to have a chance to win anything. So I wouldn't wager everyone else's happiness for a fraction of a shot at a miracle. While the concept of some kind of afterlife may be a gamble as well, I'd take those odds, and feel at ease with the knowledge that the people I loved could have some peace. Which is all that really matters.
The idea of signing something has been brewing for the last day or so. It's now clear that Trudi was right--in that I should fill something out that states my intentions over life support and finances and things like that. I needed to make that decision, or else it would be made for me. I would lose more control--which was what was happening at each turn. I did not want to lose any more.
About that decision:
I love my parents deeply, and do not doubt their love for me for even a second. But I respect no one's rationality more than Trudi's. We've been making nothing but difficult practical decisions together for the last year--mostly involving our unfinished house. I know she would be careful and unemotional in making any decision for me--which is exactly what I would want. I know she would have a strong, generous and loving support group to make any tough decisions as well.
So this morning, I told Trudi to go ahead and set-up a meeting with the lawyer today.
I was lying in bed, eating some McDonalds breakfast I had asked Trudi to get me earlier, while I wrote some e-mails to people I hadn't spoken to in years. Trudi handed me the phone. "The lawyer needs to talk to you," she said, and then left the room to give me privacy. I thought of putting my food down, but I had a right to be rude and eat on the phone--these were tough times.
So there I was, chomping away at an egg and cheese biscuit and a hash brown, and asking some terrible questions. I've had to ask a lot of terrible questions in the last few days. But these felt worse:
Q:So, say I'm in a coma--what document dictates when the plug is pulled?
A: That would be the living will, sir.
Q:What if something happens during surgery? Like say, there's a complication, and they need to ask what to do?
A: Well, if they're in surgery, the doctors will decide. (Okay, that was a stupid question.)
What about money? What is a power of attorney? Does that mean that person get all my money? How do I go about deciding financial maters?
What if I don't die--or if I'm not in a coma. Let's just say I'm alive, but incapable of making decisions for myself. Like brain damaged. What happens then?
Yes, I did say all these things, and quite calmly. I guess this is all starting to become normal.
"I just don't want to be in a position where I am unable to do what I need to do to help you," Trudi said as we headed towards the next stage, not clear at all where that was.
Trudi has only asked me for this one favor through all of this. She wants fill out whatever legal document that would give her the power to make any medical calls necessary if I become incapable of doing so myself--a small, but definite possibility.
"Why?" I said. I was angry. "I can't think about this now," I said, as I walked off in the direction of the elevator, leaving her a few paces behind. It was the first time I'd snapped at her in all of this. I heard her take a short tight breath, so I stopped to face her. She looked at me with that face she makes--it's red and sad and a little contorted. It means I've hurt her, but she understands I didn't mean it to hurt her. She's trying to be rational, to not take it personally, to not react, to know there are bigger things going on than her feelings. That's why her face gets like that. That's hard for anyone, and I feel bad for putting her through all this. She nods, and squeezes out a pained smile. We walk off toward the elevator together.
Still, I felt bothered by the idea. I had much more pressing things to think about. The question of whether to "pull a plug" or not meant nothing. Coma, sleep, and death were the same. I would not be conscious. If there was some kind of afterlife, or next life, or portal to another existence (which is how I prefer to think of it, if I'm trying to be positive) then that would be the first thing I would experience. For me, it would be a near timeless transition to either a miraculous recovery or to the next life, or, equally likely, to nothing at all.
I realize now in this writing that this was a selfish line of thinking. Yes, to me it does not matter. (Barring the miraculous recovery part). But to others it would matter. How would my loved ones live out their days with their son, boyfriend, sibling, or friend, breathing away mindlessly in some sanitary and lonely room? How would that feel to them, to always have me hanging there, not dead, not alive? Why would I rob them of the relief of my death? For what? A tiny chance that there might be some miracle?
I have been known to enjoy myself some gambling from time to time, (money comes and goes fast at a Vegas craps table) and I have always been good at calculating odds. You always have to maximize the risks and rewards if you want to have a chance to win anything. So I wouldn't wager everyone else's happiness for a fraction of a shot at a miracle. While the concept of some kind of afterlife may be a gamble as well, I'd take those odds, and feel at ease with the knowledge that the people I loved could have some peace. Which is all that really matters.
The idea of signing something has been brewing for the last day or so. It's now clear that Trudi was right--in that I should fill something out that states my intentions over life support and finances and things like that. I needed to make that decision, or else it would be made for me. I would lose more control--which was what was happening at each turn. I did not want to lose any more.
About that decision:
I love my parents deeply, and do not doubt their love for me for even a second. But I respect no one's rationality more than Trudi's. We've been making nothing but difficult practical decisions together for the last year--mostly involving our unfinished house. I know she would be careful and unemotional in making any decision for me--which is exactly what I would want. I know she would have a strong, generous and loving support group to make any tough decisions as well.
So this morning, I told Trudi to go ahead and set-up a meeting with the lawyer today.
I was lying in bed, eating some McDonalds breakfast I had asked Trudi to get me earlier, while I wrote some e-mails to people I hadn't spoken to in years. Trudi handed me the phone. "The lawyer needs to talk to you," she said, and then left the room to give me privacy. I thought of putting my food down, but I had a right to be rude and eat on the phone--these were tough times.
So there I was, chomping away at an egg and cheese biscuit and a hash brown, and asking some terrible questions. I've had to ask a lot of terrible questions in the last few days. But these felt worse:
Q:So, say I'm in a coma--what document dictates when the plug is pulled?
A: That would be the living will, sir.
Q:What if something happens during surgery? Like say, there's a complication, and they need to ask what to do?
A: Well, if they're in surgery, the doctors will decide. (Okay, that was a stupid question.)
What about money? What is a power of attorney? Does that mean that person get all my money? How do I go about deciding financial maters?
What if I don't die--or if I'm not in a coma. Let's just say I'm alive, but incapable of making decisions for myself. Like brain damaged. What happens then?
Yes, I did say all these things, and quite calmly. I guess this is all starting to become normal.
Wednesday, May 5, 2010
A time line to date
April 17th: I go to see a neurologist, who gives me an EEG and a clean bill of health.
Apr 26th: I go to see a Primary car doc, just to get a check up. He dismisses the EEG, orders an MRI.
Saturday, May 1st: I get my MRI. It makes funny noises that I mostly enjoy.
Monday, May 3rd: Results come back. I am told I have a growth, and will likely need surgery. Referred to Neurosurgeon, Dr. Wayne Villanueva at the Neurological institute of Kentucky.
Tuesday, May 4th, 8:30 am: Go to see Villanueva. He is careful and precise. Trudi and I like him very much. He recommends endoscopic surgery as a first step to deal with the hydrocephalus and to get a biopsy. He refers us to another surgeon at the institute who specializes in endoscopy.
Same day, 1:30 pm: We go to downtown Louisville to meet Dr. Todd Vitaz. He is brief and under some time constraint. He schedules us for surgery the following morning.
4:30: We decide this is too fast and postpone the surgery.
Apr 26th: I go to see a Primary car doc, just to get a check up. He dismisses the EEG, orders an MRI.
Saturday, May 1st: I get my MRI. It makes funny noises that I mostly enjoy.
Monday, May 3rd: Results come back. I am told I have a growth, and will likely need surgery. Referred to Neurosurgeon, Dr. Wayne Villanueva at the Neurological institute of Kentucky.
Tuesday, May 4th, 8:30 am: Go to see Villanueva. He is careful and precise. Trudi and I like him very much. He recommends endoscopic surgery as a first step to deal with the hydrocephalus and to get a biopsy. He refers us to another surgeon at the institute who specializes in endoscopy.
Same day, 1:30 pm: We go to downtown Louisville to meet Dr. Todd Vitaz. He is brief and under some time constraint. He schedules us for surgery the following morning.
4:30: We decide this is too fast and postpone the surgery.
Tuesday, May 4, 2010
A history
Waring: This may not be edifying.
Long shot: Louisville, Kentucky. Suburb. Focus on a manicured house. Cut to: closed bathroom door. Pathetic whimpers coming from inside. That's me--I'm on the bowl. I'm moaning because I've having a bit of trouble, you know, getting it out. That's normal. What is not normal is the pain. It's in my head, which feels like a balloon ready to burst. I stop pushing, grab a hold of the towel rack, and take a series of deep breaths. The pain fades quick as it came. I push again--some things are stubborn--and there's the pain again. Someone's taken a plumber's wrench to my temples. I breathe, pain goes, I push, it comes, and it's getting worse as we go. This lasts a very long and memorable twenty minutes.
My girlfriend, Trudi, stands outside the door and calls my name, wants to know if I'm alright. She's afraid. I feel this with the cracking of her voice. It sounds fragile. I hold the wall for balance and look at myself in the mirror, gasping, flush and weary. I tell her that I am fine, but as the words come out of my mouth I do not know if they are true.
Let me be clear. I am not a man with a history of excessive self-preservation. With the aid of the wondrous array of chemical products available to the modern youth, I have--in my past--enthusiastically propelled myself to the brink of physical and mental decay, despair and despondence. I've even snorted enough powder of various sorts to wrack my nose out of shape (I needed surgery to complete my clean-up). But even at my worst, lowest and most depraved moments of ruin--I've never felt how I feel in this bathroom right now. *Destructible*.
Long shot: Louisville, Kentucky. Suburb. Focus on a manicured house. Cut to: closed bathroom door. Pathetic whimpers coming from inside. That's me--I'm on the bowl. I'm moaning because I've having a bit of trouble, you know, getting it out. That's normal. What is not normal is the pain. It's in my head, which feels like a balloon ready to burst. I stop pushing, grab a hold of the towel rack, and take a series of deep breaths. The pain fades quick as it came. I push again--some things are stubborn--and there's the pain again. Someone's taken a plumber's wrench to my temples. I breathe, pain goes, I push, it comes, and it's getting worse as we go. This lasts a very long and memorable twenty minutes.
My girlfriend, Trudi, stands outside the door and calls my name, wants to know if I'm alright. She's afraid. I feel this with the cracking of her voice. It sounds fragile. I hold the wall for balance and look at myself in the mirror, gasping, flush and weary. I tell her that I am fine, but as the words come out of my mouth I do not know if they are true.
Let me be clear. I am not a man with a history of excessive self-preservation. With the aid of the wondrous array of chemical products available to the modern youth, I have--in my past--enthusiastically propelled myself to the brink of physical and mental decay, despair and despondence. I've even snorted enough powder of various sorts to wrack my nose out of shape (I needed surgery to complete my clean-up). But even at my worst, lowest and most depraved moments of ruin--I've never felt how I feel in this bathroom right now. *Destructible*.
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