Day one, as expected was the roughest.
I'm not usually one for references, literary or otherwise, but this is impossible to resist. Radiation is Inferno plus 2001: A space Odyssey with a splash of Frankenstein.
First there was the guide. He called me out from the waiting room, yellow medical folder in hand, a photo of me on its cover. The file contained everything pertinent about my brain. He opened the fogged glass door, the portal I'd been seen other people enter once a speaker-boxed voice called their names from above, and held it open for me to pass through.
Inside, we descended a long ramp. As we walked,he told me what to do each day I came. Sign in, wait for my name to be called on the loudspeaker, come down the ramp, and wait by the chairs until someone comes for me. He could hardly have been gentler--the bleakness of tone is all mine.
We turned the corner and down another ramp. At the end of that, we stood before two open doorways, separated by a large and tastefully decorated tree. Next to each doorway was a little control room, each with a large bay window looking onto something I couldn't see. Inside, a few technicians looked at screens. He told me mostly I would go in left door, but sometimes in the right. They did the same thing, he said. Ready?
We entered the left passageway--as we passed, I noted the door, which looked like a bank vault lock--a movable wall of metal, thick as a cinder block. On its face was the radiation symbol: a circle surrounded by three trapezoids with curved sides. The little circle, I thought, was my head. The trapezoids were the radiation shooting in; or, they were my thoughts shooting out; or, they were like the squiggly lines of a cartoonist to indicate some emotion--grief, fear, anger, but these were the mechanical forms of the emotions, since the lines were not squiggly at all but smooth and delineated geometric shapes. The caption read: Danger, high radiation area.
We descended still another long ramp, and as we approached the bottom, I heard music, indistinct at first, but as we neared I judged it soothing. It bouncing off the walls and up the corridor, but could not make it as far as the thick door. It got clearer as we reached the turn, and I could make out a voice. On the counter was a small CD player.
I turned to take in the room and there was the machine.
I wasn't prepared for it. I imagined something small, something like the photon guns of the sci-fi movies I'd seen. This was not a tool--this was an entity. It took up most of the room--everything was drawn to it, no matter where you stood, it remained the center. Silent and still as a statue, it seemed to brood over something it could never express or solve. Its body gave it bravado--an enormous rectangular box of flat metal jutting out from the wall into the middle of the room. The body had none of the delicacy I expected from sharp-edge technology, having instead the air of a brutish printing press, pistons and hydrolics hiding under its metal skin.
But the head was really the wonder: two sets of thick arms, also dark gray, formed a cross, jaws open, leaving a large square mouth in the center. In this middle of this mouth was a target board--there, at last, evidence of its sophistication: a circular digital screen with orange numbers, all single digits with one decimal place, some negative, some positive.
Only a few feet in front of its waiting mouth was the hard bed I was to be laid on. "That's where you stay," one of the two technicians said. They moved back and forth from the counters to the bed, then from the bed to the machine, from the machine back to the counters. They worked devoutly, reverently, in silent symbiosis with the machine, knowing what it needed when it needed it without a signifier passed between them.
On the bed there was a black molding in the shape of human shoulders and neck, and a plastic bowl where the back of my head would fit. The other technician was holding the white plastic mask of my head.
"You should feel the same when you leave as when you came in," one tech said. "You ready? Sit right up here. Now, scoot up a bit, a bit more. That's good. Now when you come out, don't get up right away, because you'll be up in the air, the table moves around up and down, will turn at some points so the machine can reach at different angles. Alright?"
The back of my head hurt because of the metal plate there. The white mask came over my head, and each technician stood on one side of me, locking the mask into place, tighter, and tighter with each snap, until I was frozen in place. A laser light from above hit just under my left eye, and the bottom of my vision there was bathed in a soft glow of red light.
"If you need us, just wave, we'll be watching from up there, in the window. But most people don't need anything, but just in case, so you know, we'll be right there, ok?"
I imagine they sealed the vault after they left me in the mouth of the machine.
Tuesday, December 14, 2010
Thursday, December 2, 2010
Tests
Another MRI: Six in the morning, 30 degrees and dark. Lie me on the white slab, stuff yellow plugs in my ears, lower the hockey mask to keep me in place. "Hold this ball and squeeze it if you need me." What could I possibly need? I'm swallowed by the plastic tube.
This place is familiar.
Deep magnetic vibrations rumble through me, and beeps blare like apocalyptic car alarms, catastrophic computer errors. Everything's wrong, Everything's wrong! they scream, inches from my ears. The sounds repeat, and repeat, in the same pattern for minutes,and minutes, and soon these warnings soothe like gentle coos. It's the repetition that provides the relief. Five beeps, pause, five clicks, pause. After each pause the sounds move down my head, a centimeter at a time. Five beeps, pause, five clicks pause. Sometimes the magnets vibrate my chest, my stomach. A voice chimes from a speaker behind me that I cannot see, "Doing great, four more."
This one is chatty, I think. My last MRI techs were more of the set-it-and-forget-it, stick-em-in-and-ciya-in-a-half-hour variety. This lady checks in every few tests. There is a mirror above my eyes, slanted at a forty-five degree angle so that I can see out of the tube at the operator in the booth. I wonder why this is there. It's nice, I guess, for people who are freaked out, who need a smiling face, who need to be reminded that there are still humans in the world, that no nuclear bomb has eradicated the landscape, that no sudden plague has descended and wiped out half the population while they lay, safe, crooned into a trance by magnetic rays. It is easy to forget the rest of the world, ten minutes into that plastic tube, with the constant humming and whirring of magnets, scanning, seeing. . .but I prefer to be forgotten, isolated, prefer to have my communion with the tube and its hidden magnets, its smooth skin and moving parts I can hear but cannot see, connected to very wise computers that can map all the secret parts of my less-than-perfect brain.
I see the woman, safely behind the glass booth. I watch her, through a mirror, through the glass on whose surface reflects the image of my plastic tomb--I can see the circular hole, and the bottom of my feet. I think of half-eaten alligator victims. I can see the technician drinking her coffee, going to the bathroom, then sitting to start another test.
Another test. This time it's just beeps, beeps, high pitched, no deep hums, no clicks. It repeats, and repeats, and soon I hear it as a song--some noises from the left, some from the right, and it's steady. I listen closer, longer. . .more sounds emerge, sounds lurking inside the other sounds, sounds that emerge between the other sounds, that feel like a wave floating back and forth between my ears. As I understand its music, it feels safe. I like this place more and more, my little safe yellow-white tube.
I am pulled out, injected with "contrast," sent back in. I like this place because it's not the next place, where they radiate you. Me. I do not like that verb," radiate." It should only be used as a metaphor. Never literal. I am frightened of the brain frying I have agreed to, have signed for on a tiny digital signature box with a plastic wired pen, my name was barely legible, scratchy and jumpy--was it me or the machine? I still have time to change my mind, I assure myself. Nothing is happening yet. Five clicks, pause, five beeps, pause. Nothing is happening.
Upstairs, in radiation central, a nurse goes over side effects again--even with my eyepatch, I can see her compassion. Every time she states a side effect, "hair loss, headaches. . ." she makes a face, a face I can't describe except to say that it reveals that this is not easy for her, her face tells me her heart sears every time she explains these things to someone--which is likely often--every time she has to look at the fear and disbelief on another human's face, sitting two feet from her. That is all that separates us: two feet, and millions of miles.
Next they make the mask--my new attendant is blond with a constant and tall mid-western smile. Her compassion is hidden--or replaced--by lavish niceness. "And how are you today?" A different approach to the patient. I preferred the believable compassion route, but I'm sure that if everyone treated me that way, I'd wretch on an empty stomach.
"Patient," by the way, is a wonderful name. In as much as my life has changed, so has my profession. At the moment, "patient," is my career, my daily worry and reward, and "patience," perhaps the flickering human quality that best predicts success or failure--not of health necessarily, but of happiness and sanity. I can only do well or poorly in relation to this job; everything else in life flattens, looses a dimension, as a sphere to a circle; everything else becomes a banal, facile narrative of humdrum unsickness.
Of course, I say to myself, this is not true. The rest of my life does matter, and it some ways, it only matters all the more. It is not only my health that matters. So says the foolish babbling of the good old head, while the heart screams its maligned and unwanted bits of truth.
The mask--I lie in front of another tube, this time with a black rack for my head. The niceness keeps coming,"Winter's here, eh?" as she guides me down,and tells me each thing that will happen, very slowly, very clearly, how someone speaks to kindergartners: I am going to put you in this mask, I am going to press it on your face, it is going to be warm, then it will get very tight as it cools. She sounds deeply thrilled about this. She props up my legs with a bright red foam pillow, tells me to hold still.
I finally have a job. This mask is used to lock me down, hold me in a precise point in space, so that the radiation can line up where it needs to, so its rays find their mark. This is the middle of my brain--think snipers, not napalm carpet bombers. Precision. Precision. At this technical wizardry, I am amazed and horrified. I feel lucky, and jinxed. Precision, I think. Don't move, don't swallow. If there's anything I can do to save myself, any part I can play in this drama, this is it: don't move.
She presses the mask down on my face, and it is like a hot warm plastic bath. As it cools, it feels like a snake slowly constricting around my face. Soon, the plastic has hardened and I have a new face, a new skin. I am scanned again, this time with the mask. I wonder what I look like from the outside, with this white plastic mask with its consistent pattern of holes. I can breath through this, I think. I don't know why this is surprising, but it is. I can breath through this.
This place is familiar.
Deep magnetic vibrations rumble through me, and beeps blare like apocalyptic car alarms, catastrophic computer errors. Everything's wrong, Everything's wrong! they scream, inches from my ears. The sounds repeat, and repeat, in the same pattern for minutes,and minutes, and soon these warnings soothe like gentle coos. It's the repetition that provides the relief. Five beeps, pause, five clicks, pause. After each pause the sounds move down my head, a centimeter at a time. Five beeps, pause, five clicks pause. Sometimes the magnets vibrate my chest, my stomach. A voice chimes from a speaker behind me that I cannot see, "Doing great, four more."
This one is chatty, I think. My last MRI techs were more of the set-it-and-forget-it, stick-em-in-and-ciya-in-a-half-hour variety. This lady checks in every few tests. There is a mirror above my eyes, slanted at a forty-five degree angle so that I can see out of the tube at the operator in the booth. I wonder why this is there. It's nice, I guess, for people who are freaked out, who need a smiling face, who need to be reminded that there are still humans in the world, that no nuclear bomb has eradicated the landscape, that no sudden plague has descended and wiped out half the population while they lay, safe, crooned into a trance by magnetic rays. It is easy to forget the rest of the world, ten minutes into that plastic tube, with the constant humming and whirring of magnets, scanning, seeing. . .but I prefer to be forgotten, isolated, prefer to have my communion with the tube and its hidden magnets, its smooth skin and moving parts I can hear but cannot see, connected to very wise computers that can map all the secret parts of my less-than-perfect brain.
I see the woman, safely behind the glass booth. I watch her, through a mirror, through the glass on whose surface reflects the image of my plastic tomb--I can see the circular hole, and the bottom of my feet. I think of half-eaten alligator victims. I can see the technician drinking her coffee, going to the bathroom, then sitting to start another test.
Another test. This time it's just beeps, beeps, high pitched, no deep hums, no clicks. It repeats, and repeats, and soon I hear it as a song--some noises from the left, some from the right, and it's steady. I listen closer, longer. . .more sounds emerge, sounds lurking inside the other sounds, sounds that emerge between the other sounds, that feel like a wave floating back and forth between my ears. As I understand its music, it feels safe. I like this place more and more, my little safe yellow-white tube.
I am pulled out, injected with "contrast," sent back in. I like this place because it's not the next place, where they radiate you. Me. I do not like that verb," radiate." It should only be used as a metaphor. Never literal. I am frightened of the brain frying I have agreed to, have signed for on a tiny digital signature box with a plastic wired pen, my name was barely legible, scratchy and jumpy--was it me or the machine? I still have time to change my mind, I assure myself. Nothing is happening yet. Five clicks, pause, five beeps, pause. Nothing is happening.
Upstairs, in radiation central, a nurse goes over side effects again--even with my eyepatch, I can see her compassion. Every time she states a side effect, "hair loss, headaches. . ." she makes a face, a face I can't describe except to say that it reveals that this is not easy for her, her face tells me her heart sears every time she explains these things to someone--which is likely often--every time she has to look at the fear and disbelief on another human's face, sitting two feet from her. That is all that separates us: two feet, and millions of miles.
Next they make the mask--my new attendant is blond with a constant and tall mid-western smile. Her compassion is hidden--or replaced--by lavish niceness. "And how are you today?" A different approach to the patient. I preferred the believable compassion route, but I'm sure that if everyone treated me that way, I'd wretch on an empty stomach.
"Patient," by the way, is a wonderful name. In as much as my life has changed, so has my profession. At the moment, "patient," is my career, my daily worry and reward, and "patience," perhaps the flickering human quality that best predicts success or failure--not of health necessarily, but of happiness and sanity. I can only do well or poorly in relation to this job; everything else in life flattens, looses a dimension, as a sphere to a circle; everything else becomes a banal, facile narrative of humdrum unsickness.
Of course, I say to myself, this is not true. The rest of my life does matter, and it some ways, it only matters all the more. It is not only my health that matters. So says the foolish babbling of the good old head, while the heart screams its maligned and unwanted bits of truth.
The mask--I lie in front of another tube, this time with a black rack for my head. The niceness keeps coming,"Winter's here, eh?" as she guides me down,and tells me each thing that will happen, very slowly, very clearly, how someone speaks to kindergartners: I am going to put you in this mask, I am going to press it on your face, it is going to be warm, then it will get very tight as it cools. She sounds deeply thrilled about this. She props up my legs with a bright red foam pillow, tells me to hold still.
I finally have a job. This mask is used to lock me down, hold me in a precise point in space, so that the radiation can line up where it needs to, so its rays find their mark. This is the middle of my brain--think snipers, not napalm carpet bombers. Precision. Precision. At this technical wizardry, I am amazed and horrified. I feel lucky, and jinxed. Precision, I think. Don't move, don't swallow. If there's anything I can do to save myself, any part I can play in this drama, this is it: don't move.
She presses the mask down on my face, and it is like a hot warm plastic bath. As it cools, it feels like a snake slowly constricting around my face. Soon, the plastic has hardened and I have a new face, a new skin. I am scanned again, this time with the mask. I wonder what I look like from the outside, with this white plastic mask with its consistent pattern of holes. I can breath through this, I think. I don't know why this is surprising, but it is. I can breath through this.
Sunday, November 28, 2010
Radiation pre-tests
After speaking to another Doctor out in Tucson, who generously went over my case with another oncologist who handed me the same opinion I had been handed twice already, (though he was decidedly more optimistic than my other doctors had been), I decided to have the radiation. He left me with this: "You should feel good--you've done your due diligence." I laughed, because I didn't feel good at all. After we hung up, that phrase kept repeating, due diligence, due diligence. That was all I could do. It felt pathetic.
I spent the week depressed, and ultimately, resigned- I called and scheduled my appointment for radiation therapy. Preparations: a ct scan to make the mask, (I don't have the details of this, but I'll get them) and an MRI. This is happening Thursday morning. I do not know when the actual radiating begins.
I have decided to start taking anti depressants, because I feel I've been mired in something for some time. It's been ten days of that, and I'm feeling better already. I am writing a lot, and reading a lot, and composing some music. I feel engaged, still, and not totally lost in tumor world, in short. I feel more optimistic. I am trying to be realistic about my situation, about my health. But the focus--last week it was on the fear, the negatives--and I am still,now, very much afraid--yet I am beginning to feel much more positive. I can let go, for a while, of my worries about dying, or of further brain damage. It has been important for me to deal with these anxieties head on, accept them as they are, and not wish them away. I'm sure they will come back--they are more probable to return than the tumor is.
I am resting a bit easier with my "due diligence."
Side bit: I was just back in NY for thanksgiving. My youngest brother, James, had asked if he could come out and visit me, as we'd been talking about for some time, but having the plans consistently pushed off by the tumor.
"Well," I said. "I have to have radiation treatment. I might not be feeling too well for a while." I've been laughing at that phrase, "radiation treatment." Shock treatment. The imbalance of these words, stuck together,improbable and ghastly yet absurdly commonplace.
"Radiation?" he said. "What's that?"
Maybe I should not have said anything, but I always err on the side of being too honest, with James at least, because I know, too well, the pain of being lied to as a child. I don't want to lie to him, but I've been careful not to upset him either. I don't want to spoil his innocence with adult worries. He has too many of those for an eleven-year-old. I continue,"Well, they take a machine and shoot radiation at--"
"They shoot you?" he said, a little panicked. Bad word.
"No, no, they won't shoot me. Aim," I said. "They aim it at me--it doesn't matter. It's just to make sure it doesn't come back. Then I'll be fine. Then you can come visit."
He was excited and happy about this, as was I. And I was glad to get out of the conversation without lying and without frightening him--too much.
But to do so, I had to resort to the thing that has bothered me the most in this tumor business--the often repeated assurance of well-intentioned friends and family: "You'll be fine, I know it, everything will be fine." Sometimes this assurance is couched in religion, sometimes it is not.
I do not share this feeling. I do not believe in a conscious, conspiring god. I do believe that a central importance of my existence is self-awareness. Wishing away my actual situation--hardly secure or definite, a relentless doubt casting its shadow over whatever I look upon--with an hopeful but inaccurate and ultimately self-deceiving narrative--well, it doesn't do me any good. I understand good intentions, and the fact that everyone deals with things differently. My "differently" is focused on being honest and realistic with myself. Yes, the danger is that can spill over to some form of despair. I am watchful. When I hear these assurances, I feel quite alone.
I am glad to receive those warm wishes, still.
I spent the week depressed, and ultimately, resigned- I called and scheduled my appointment for radiation therapy. Preparations: a ct scan to make the mask, (I don't have the details of this, but I'll get them) and an MRI. This is happening Thursday morning. I do not know when the actual radiating begins.
I have decided to start taking anti depressants, because I feel I've been mired in something for some time. It's been ten days of that, and I'm feeling better already. I am writing a lot, and reading a lot, and composing some music. I feel engaged, still, and not totally lost in tumor world, in short. I feel more optimistic. I am trying to be realistic about my situation, about my health. But the focus--last week it was on the fear, the negatives--and I am still,now, very much afraid--yet I am beginning to feel much more positive. I can let go, for a while, of my worries about dying, or of further brain damage. It has been important for me to deal with these anxieties head on, accept them as they are, and not wish them away. I'm sure they will come back--they are more probable to return than the tumor is.
I am resting a bit easier with my "due diligence."
Side bit: I was just back in NY for thanksgiving. My youngest brother, James, had asked if he could come out and visit me, as we'd been talking about for some time, but having the plans consistently pushed off by the tumor.
"Well," I said. "I have to have radiation treatment. I might not be feeling too well for a while." I've been laughing at that phrase, "radiation treatment." Shock treatment. The imbalance of these words, stuck together,improbable and ghastly yet absurdly commonplace.
"Radiation?" he said. "What's that?"
Maybe I should not have said anything, but I always err on the side of being too honest, with James at least, because I know, too well, the pain of being lied to as a child. I don't want to lie to him, but I've been careful not to upset him either. I don't want to spoil his innocence with adult worries. He has too many of those for an eleven-year-old. I continue,"Well, they take a machine and shoot radiation at--"
"They shoot you?" he said, a little panicked. Bad word.
"No, no, they won't shoot me. Aim," I said. "They aim it at me--it doesn't matter. It's just to make sure it doesn't come back. Then I'll be fine. Then you can come visit."
He was excited and happy about this, as was I. And I was glad to get out of the conversation without lying and without frightening him--too much.
But to do so, I had to resort to the thing that has bothered me the most in this tumor business--the often repeated assurance of well-intentioned friends and family: "You'll be fine, I know it, everything will be fine." Sometimes this assurance is couched in religion, sometimes it is not.
I do not share this feeling. I do not believe in a conscious, conspiring god. I do believe that a central importance of my existence is self-awareness. Wishing away my actual situation--hardly secure or definite, a relentless doubt casting its shadow over whatever I look upon--with an hopeful but inaccurate and ultimately self-deceiving narrative--well, it doesn't do me any good. I understand good intentions, and the fact that everyone deals with things differently. My "differently" is focused on being honest and realistic with myself. Yes, the danger is that can spill over to some form of despair. I am watchful. When I hear these assurances, I feel quite alone.
I am glad to receive those warm wishes, still.
Tuesday, November 16, 2010
Tumor gone. . . and now.
Three months later. The surgery was a success. We achieved the main goal, total resection. Known in the med literature, which I am becoming familiar with these days, as GTR. (Gross total resection.) It means they took out all of the tumor they could see. It is the best indicator for future prognosis. So that's good.
There are some lingering side effects, and since this was a trans-occipital surgery, the problems are visual, which sucks. I'll get into those later.
Yes, the tumor is, as best we can observe via Ct scan, gone. So done, right? Life can start going back to "normal", that is, once I can see clearly again. Well, I thought so. But this week has been a bit rough, because I've been coming to understand that things may be a bit more complicated than that.
Since we got the whole tumor, we were now able to get a better pathology report on what kind of tumor it was: an ependymoma.
Ah, of course you say! One of those. Your first guess, eh? This morning, someone actually bothered to explain to me what this thing is--that someone is my potential future oncologist, a Dr. Spalding. I'm not sure why I haven't had a sit down with some doctor telling me, hey, by the way, this is what was in your head, and this is what it means for the rest of your life. To be fair to Gutin and the Sloan Kettering folks, when I staggered into his office two weeks post-op with a googly post-operative eye, well doped on pain killers, looking more like a trauma victim than a patient, I suppose it wasn't exactly the best time to hit me with a dossier on the history of ependy--ependa. . . what's that, again?
And for my part, I didn't want to know. The surgery was over. It hadn't hurt nearly as much as I'd feared it would; it wasn't nearly as awful an experience as my first had been, for whatever combination of reasons. I had more residuals defects, however. I had a visual field cut--I could not see anything in the left half of both my eyes. (When I tracked my right hand across my face it disappeared as it passed my nose.) And double vision to boot. My vision would get better, they said. They couldn't guarantee it, but since the surgery went as well as they could have hoped, they had no reason to believe I'd suffered any damage. (Two months later, I now have some reason to believe there may be permanent damage, since my CT scan does show some damage in my occipital lobe. But hey, that's brain surgery.)
So I was happy to recover quietly--take walks, take pain killers to keep the headaches at bay, and lament my shitty vision, which was improving, but so slowly, it was hard to measure.
It was at that post-op meeting back in September that the word radiation was first mentioned. It might be recommended, Gutin said. But he seemed doubtful. So I was doubtful. I couldn't worry about that, so I didn't. He told me to call him in a few weeks, after the pediatric board would meet and look at my file, and they'd make an advisement.
So I came home, and started to try to adjust back to living again, now with an eye patch.
Finally, the board met, and recommended I have radiation treatment to prevent any recurrence. I was very upset about this. Six weeks, five days a week, and some nasty side effects. Why did I need it? There wasn't hard evidence, Gutin said, no controled, double blind studies. Just "soft" evidence. Some case studies of ependymomas showing that people did better with radiation than without. He didn't sound convinced, though he said if it were him, he'd have the radiation. But he also said, I didn't have to have it done.
I sat on this knowledge for a while. He sent me the one of the studies, but I didn't read it for two weeks.
Finally, I went to see a neuro ophthalmologist--this past Thursday--and I caught him up on my case history. "Radiation's a big deal," he said. "I just had a meeting with someone with the same type of tumor. He had GTR, then radiation therapy after. The tumor hasn't come back," he said, "but he's having serious problems from the radiation. Cognitive problems. I'm not recomending you don't have radiation. I'm just telling you there are serious risks. You have to know what the rewards are if you're going to do this."
Oh, and by the way, he said--you have some damage here on your ct scan, where they went *through* your occipital lobe.
"No,no," I said, "that's a mistake, they didn't go through it, they went around it. They drained the fluid so that part of the brain shrunk and worked around it."
"Yeah, well, just look here," he said, and turned his flat screen monitor so it faced me. He clicked the down arrow on the computer so it cycled through horizontal slices of my head. "See those circles?" he said. "That's all fluid. There's fluid there because those cells are dead." Then he looked me in the eyes, so that I would really get it, and he said, "Those cells are not going to come back."
I felt cold, and aware that I had lost something, just there, after he said that.
"How could that happened?" I said. "If they went around it, like they said?"
"It could have happened in a lot of ways," he said. "When they drained it, if it gets cut off from blood flow. It's like a mini-stroke. it can only go so long without oxygen. Or when it was filling back up? It's all very delicate. This is what I'm saying--neurosurgeons are great at what they do, but they usually underestimate the damage that happens in and around surgeries. It the same with radiation. Don't let anyone tell you there is little risk involved with these things. They say 2 percent, but that's just wrong. It's a lot more than that. It's better than your other options, but you need to understand this before you go ahead and make any decisions."
I felt like a glass of cold water was dumped on my head.
And those black spots on the Ct scan. Two dark little circles. That area controls my vision. Fuck. My vision. And what if we had gone, instead, supra-cerebellum? The other route that was suggested and debated before the surgery? I began to say this to the doctor. It reminded me of my father and all his gambling buddies, lamenting their bets after the game was over, if they had only saw this, if they had only bet how they felt or made some choice, if only, if only. "We can't look at that," the doctor said. "There's no point to it." I knew that, I knew it. But what if we had gone a different way? Would I be able to see now?
So I read the article. I had questions--how sure were they of my pathology- that is was the tumor they believed it to be? And if they was any uncertainty, did that parlay into uncertainty about how the tumor would react to radiation, and how likely it was to recur?
And now, comign full curcle, back to ependymomas--they seem to be more common in children--90 percent of cases are under 18. Was this a confounding factor, that made me different than the poeple in the studies? Also, the placement was slightly different--did that matter? Maybe that made me better off also.
Fien questions, and they were all answered today by the oncologist.
Since ependymomas are a very specific type of tumor, and being that Sloan-Kettering is maybe the best brain tumor hospital in the world, the pathology is as correct as any pathology right can be. (Since they are all educated guess at made up categories.)
Fine. And the age? As best we know, ependymoma act the same in adults as they do in children. Hmm. Okay. Placement?
Dr. Spalding drew a picture. "up here, near the top is your ventrical sac. It where your body store your cerebrospinal (CSF) fluid. All along the walls of the ventrical are ependymoma cells. we call these cells "little faucets" because they create--are the faucets--for the CSF. They even line the tubes, which carry the CSF down your spine. This," he said as he inked a dark circula spot," is your pineal gland. There's a tube right next to it. That's where your tumor was. When the cells grow, and form a mass, we call it an ependymoma." God, it felt good to hear him say all that. It was a small consice explanation, and while it didn't change a thing, it made me feel a tiny bit better.
Then he wrote down more things.
He wrote, and spoke, as he wrote: Total section, and monitoring. Recurrence rate of seventy to eighty percent.
I guessed, from the reading I'd done, it was fairly high. I hadn't guess that fucking high.
He kept writing.
Total resection, he said, with radiation therpay, recurrance rates are 15 to 20 percent.
"To the best of our knowledge," he said.
Of course, this was all to the best of our knowledge.
This is all at 10 years. We rarely have data after ten years.
And radiation?
30 treatments. 5 days a week for 6 weeks.
And how much radiation do we need," I said, "to prevent it? On average?"
"On a scale of one to ten?" he said.
"Sure."
He paused only a mili-second. "Eight."
Fuck.
There are short term and long term effects. he said. Short term, he said, as he wrote the same words down on the back of a paper: hair loss, headache, vomiting, vision problems, fatigue. The fatigue can be debilitating.
Long term: tumor growth. It is possible to get a tumor, a non-ependymoma, from radiation. One in maybe 10,000. You can suffer other damage to different parts of the brain. Hearing loss, speech, functioning, learning impairment. This happens in less than five percent of the cases.
Five percent. I haven't exactly been feeling all that lucky lately.
He says I need to decide before Thanksgiving, because it' already two months out of surgery and we don't want to miss our chance at radiation. If it comes back, it's already too late.
And yes, the tumor is more insidious once it comes back. It tends to become more entwined in brain matter. Surgery in the same region is more tricky, since there is scar tissue in the same regions.
The idea is to prevent the sucker from coming back before that can happen. He was unequivocal about his opinion--the best outcome is with radiation therapy.
I won't think about it too long.
There are some lingering side effects, and since this was a trans-occipital surgery, the problems are visual, which sucks. I'll get into those later.
Yes, the tumor is, as best we can observe via Ct scan, gone. So done, right? Life can start going back to "normal", that is, once I can see clearly again. Well, I thought so. But this week has been a bit rough, because I've been coming to understand that things may be a bit more complicated than that.
Since we got the whole tumor, we were now able to get a better pathology report on what kind of tumor it was: an ependymoma.
Ah, of course you say! One of those. Your first guess, eh? This morning, someone actually bothered to explain to me what this thing is--that someone is my potential future oncologist, a Dr. Spalding. I'm not sure why I haven't had a sit down with some doctor telling me, hey, by the way, this is what was in your head, and this is what it means for the rest of your life. To be fair to Gutin and the Sloan Kettering folks, when I staggered into his office two weeks post-op with a googly post-operative eye, well doped on pain killers, looking more like a trauma victim than a patient, I suppose it wasn't exactly the best time to hit me with a dossier on the history of ependy--ependa. . . what's that, again?
And for my part, I didn't want to know. The surgery was over. It hadn't hurt nearly as much as I'd feared it would; it wasn't nearly as awful an experience as my first had been, for whatever combination of reasons. I had more residuals defects, however. I had a visual field cut--I could not see anything in the left half of both my eyes. (When I tracked my right hand across my face it disappeared as it passed my nose.) And double vision to boot. My vision would get better, they said. They couldn't guarantee it, but since the surgery went as well as they could have hoped, they had no reason to believe I'd suffered any damage. (Two months later, I now have some reason to believe there may be permanent damage, since my CT scan does show some damage in my occipital lobe. But hey, that's brain surgery.)
So I was happy to recover quietly--take walks, take pain killers to keep the headaches at bay, and lament my shitty vision, which was improving, but so slowly, it was hard to measure.
It was at that post-op meeting back in September that the word radiation was first mentioned. It might be recommended, Gutin said. But he seemed doubtful. So I was doubtful. I couldn't worry about that, so I didn't. He told me to call him in a few weeks, after the pediatric board would meet and look at my file, and they'd make an advisement.
So I came home, and started to try to adjust back to living again, now with an eye patch.
Finally, the board met, and recommended I have radiation treatment to prevent any recurrence. I was very upset about this. Six weeks, five days a week, and some nasty side effects. Why did I need it? There wasn't hard evidence, Gutin said, no controled, double blind studies. Just "soft" evidence. Some case studies of ependymomas showing that people did better with radiation than without. He didn't sound convinced, though he said if it were him, he'd have the radiation. But he also said, I didn't have to have it done.
I sat on this knowledge for a while. He sent me the one of the studies, but I didn't read it for two weeks.
Finally, I went to see a neuro ophthalmologist--this past Thursday--and I caught him up on my case history. "Radiation's a big deal," he said. "I just had a meeting with someone with the same type of tumor. He had GTR, then radiation therapy after. The tumor hasn't come back," he said, "but he's having serious problems from the radiation. Cognitive problems. I'm not recomending you don't have radiation. I'm just telling you there are serious risks. You have to know what the rewards are if you're going to do this."
Oh, and by the way, he said--you have some damage here on your ct scan, where they went *through* your occipital lobe.
"No,no," I said, "that's a mistake, they didn't go through it, they went around it. They drained the fluid so that part of the brain shrunk and worked around it."
"Yeah, well, just look here," he said, and turned his flat screen monitor so it faced me. He clicked the down arrow on the computer so it cycled through horizontal slices of my head. "See those circles?" he said. "That's all fluid. There's fluid there because those cells are dead." Then he looked me in the eyes, so that I would really get it, and he said, "Those cells are not going to come back."
I felt cold, and aware that I had lost something, just there, after he said that.
"How could that happened?" I said. "If they went around it, like they said?"
"It could have happened in a lot of ways," he said. "When they drained it, if it gets cut off from blood flow. It's like a mini-stroke. it can only go so long without oxygen. Or when it was filling back up? It's all very delicate. This is what I'm saying--neurosurgeons are great at what they do, but they usually underestimate the damage that happens in and around surgeries. It the same with radiation. Don't let anyone tell you there is little risk involved with these things. They say 2 percent, but that's just wrong. It's a lot more than that. It's better than your other options, but you need to understand this before you go ahead and make any decisions."
I felt like a glass of cold water was dumped on my head.
And those black spots on the Ct scan. Two dark little circles. That area controls my vision. Fuck. My vision. And what if we had gone, instead, supra-cerebellum? The other route that was suggested and debated before the surgery? I began to say this to the doctor. It reminded me of my father and all his gambling buddies, lamenting their bets after the game was over, if they had only saw this, if they had only bet how they felt or made some choice, if only, if only. "We can't look at that," the doctor said. "There's no point to it." I knew that, I knew it. But what if we had gone a different way? Would I be able to see now?
So I read the article. I had questions--how sure were they of my pathology- that is was the tumor they believed it to be? And if they was any uncertainty, did that parlay into uncertainty about how the tumor would react to radiation, and how likely it was to recur?
And now, comign full curcle, back to ependymomas--they seem to be more common in children--90 percent of cases are under 18. Was this a confounding factor, that made me different than the poeple in the studies? Also, the placement was slightly different--did that matter? Maybe that made me better off also.
Fien questions, and they were all answered today by the oncologist.
Since ependymomas are a very specific type of tumor, and being that Sloan-Kettering is maybe the best brain tumor hospital in the world, the pathology is as correct as any pathology right can be. (Since they are all educated guess at made up categories.)
Fine. And the age? As best we know, ependymoma act the same in adults as they do in children. Hmm. Okay. Placement?
Dr. Spalding drew a picture. "up here, near the top is your ventrical sac. It where your body store your cerebrospinal (CSF) fluid. All along the walls of the ventrical are ependymoma cells. we call these cells "little faucets" because they create--are the faucets--for the CSF. They even line the tubes, which carry the CSF down your spine. This," he said as he inked a dark circula spot," is your pineal gland. There's a tube right next to it. That's where your tumor was. When the cells grow, and form a mass, we call it an ependymoma." God, it felt good to hear him say all that. It was a small consice explanation, and while it didn't change a thing, it made me feel a tiny bit better.
Then he wrote down more things.
He wrote, and spoke, as he wrote: Total section, and monitoring. Recurrence rate of seventy to eighty percent.
I guessed, from the reading I'd done, it was fairly high. I hadn't guess that fucking high.
He kept writing.
Total resection, he said, with radiation therpay, recurrance rates are 15 to 20 percent.
"To the best of our knowledge," he said.
Of course, this was all to the best of our knowledge.
This is all at 10 years. We rarely have data after ten years.
And radiation?
30 treatments. 5 days a week for 6 weeks.
And how much radiation do we need," I said, "to prevent it? On average?"
"On a scale of one to ten?" he said.
"Sure."
He paused only a mili-second. "Eight."
Fuck.
There are short term and long term effects. he said. Short term, he said, as he wrote the same words down on the back of a paper: hair loss, headache, vomiting, vision problems, fatigue. The fatigue can be debilitating.
Long term: tumor growth. It is possible to get a tumor, a non-ependymoma, from radiation. One in maybe 10,000. You can suffer other damage to different parts of the brain. Hearing loss, speech, functioning, learning impairment. This happens in less than five percent of the cases.
Five percent. I haven't exactly been feeling all that lucky lately.
He says I need to decide before Thanksgiving, because it' already two months out of surgery and we don't want to miss our chance at radiation. If it comes back, it's already too late.
And yes, the tumor is more insidious once it comes back. It tends to become more entwined in brain matter. Surgery in the same region is more tricky, since there is scar tissue in the same regions.
The idea is to prevent the sucker from coming back before that can happen. He was unequivocal about his opinion--the best outcome is with radiation therapy.
I won't think about it too long.
Tuesday, August 10, 2010
A long break
I cannot believe it has been over six weeks since my last entry.
I must be forgiven. Excuses for not writing always abound. But we'll stop for none of that now, only fill-ins of important facts and data and brain tumor happenings from here out.
My last meeting with Dr. Vitaz, my neurosurgeon here in Louisville, well back at end of May, established that it was, unfortunately, inevitable that the tumor come up and out. What was left to be figured was where and how this would happen. There are two approaches, he told me--above the cerebellum, the lower path, or trans-ocular, the high road. Trans-ocular, as you will readily guess, means he must go through the area in the back of the head which deals with vision. Obviously, this is not ideal, so Dr. Vitaz said he would opt for the Cerebellum route. Cerebellum, mostly dealing with balance and coordination, a much less delicate area than vision. I naturally agreed with this logic. As to where: He understood I had family in New York, and so he gave me the names of doctors there, at Memorial Sloan Kettering Hospital, in case I wanted to be near my family. However, he felt completely confident in his ability to perform the surgery. One of the doctors he recommended in NY, should I go that route, normally does pediatric surgeries--my pineal gland tumor is often found in children. (It has even been theorized that my tumor *may* have been growing since I was a boy. Alas, no way to know--no telltale rings.)
And so, after a few weeks of being horribly anxious and fearful and medicating that anxiety and fear with a steady stream, few at-a-time-pills (pain-killing, anxiety-killing, supposedly), Trudi made some phone calls for me (I found myself helplessly, and understandably, unable to deal with any of the pragmatic issues regrading this next surgery) and soon I had an appointment in NYC, at Sloan Kettering, with a Dr. Phil Gutin. We drove up to New York, fourteen hours of dogs sleeping in laps, CDs on repeat, and just that fast we were in the mid-July of NYC. This was no pleasure trip, though, and for my part, not too many social calls. Mostly just the business of the brain, and the doctor.
I liked him. He certainly looked me in the eyes, the ability to do which is a definite asset in a brain surgeon, I've learned, and he even went out of his way to touch my shoulder a few times. My father came and sat in as well, tried to follow along. Trudi came with an arsenal of good questions. I was flanked on either side by support.
What he said was that he would not go the Cerebllum route--that he would, instead, go trans-ocular. This was a surprise. He didn't want to go into details just yet, he said. He wanted to go over it fully with the other doctors. He explained that he and a Dr Soweidane would perform the surgery in tandem. Two for the price of one. I wasn't sure how to feel about this, but it was interesting, at least. He had to speak to Dr. Soweidane and the rest of the board, and then he would get back to me within a few days.
When Dr. Gutin called back the next day, my father and I were browsing around Barnes and Nobles (which my father sometimes calls, to my amused horror, 'the library' "Hey frank, drive me down to the library," he'd said, and for a moment, I thought I'd been teleported straight into some other family). I ran out into the heat and midday bright sunlight of Union Turnpike, plugging a finger into my open ear, trying to block all that Queens nonsense of buses and kids and noise. I was desperate to know something, but what I wasn't sure. I wanted to hear something that would tell me where to have this surgery, one way or the other.
Gutin told me, as he had before, that trans-ocular was the way to go. He gave me three reasons: one, my shoulders were pretty big. Funny. But they'd get in the way if they were doing the cerebellum. Second reason had to do with the angle of my head. It made the supra cerebellum path a bit tighter then was ideal. Finally, he said, Dr. Soweidane felt that the place the tumor was most likely attached would be very difficult to get at from the cerebellum route. And then Gutin said--knowing that I was contemplating surgery in Louisville and that my surgeon here was going to go through the cerebellum--he said, in quite a clear way, that they did NOT feel this was a matter of debate, nor preference. To them, this was the only correct medical option, despite the inherent risks of trans-ocular. My particular case, they felt, was safer this way. Gutin was telling me, in a most professional manner, that my other doctor's opinion was not the correct one.
Vitaz trained in Sloan Kettering. While very good, he did not, to my feeling, have the same level of expertise as the doctors at Sloan Kettering. The level of detail that was presented to me over the phone told me that much at least. It felt as though I had little to debate at this point. I trusted Gutin, and though I'm afraid of anyone touching anything that has to do with my vision, I believe this to be the safest option.
Surgery was scheduled for September 9th, which was the earliest both doctors are available.
Now the only little thing to deal with is the insurance. Which is a whole other story.
I must be forgiven. Excuses for not writing always abound. But we'll stop for none of that now, only fill-ins of important facts and data and brain tumor happenings from here out.
My last meeting with Dr. Vitaz, my neurosurgeon here in Louisville, well back at end of May, established that it was, unfortunately, inevitable that the tumor come up and out. What was left to be figured was where and how this would happen. There are two approaches, he told me--above the cerebellum, the lower path, or trans-ocular, the high road. Trans-ocular, as you will readily guess, means he must go through the area in the back of the head which deals with vision. Obviously, this is not ideal, so Dr. Vitaz said he would opt for the Cerebellum route. Cerebellum, mostly dealing with balance and coordination, a much less delicate area than vision. I naturally agreed with this logic. As to where: He understood I had family in New York, and so he gave me the names of doctors there, at Memorial Sloan Kettering Hospital, in case I wanted to be near my family. However, he felt completely confident in his ability to perform the surgery. One of the doctors he recommended in NY, should I go that route, normally does pediatric surgeries--my pineal gland tumor is often found in children. (It has even been theorized that my tumor *may* have been growing since I was a boy. Alas, no way to know--no telltale rings.)
And so, after a few weeks of being horribly anxious and fearful and medicating that anxiety and fear with a steady stream, few at-a-time-pills (pain-killing, anxiety-killing, supposedly), Trudi made some phone calls for me (I found myself helplessly, and understandably, unable to deal with any of the pragmatic issues regrading this next surgery) and soon I had an appointment in NYC, at Sloan Kettering, with a Dr. Phil Gutin. We drove up to New York, fourteen hours of dogs sleeping in laps, CDs on repeat, and just that fast we were in the mid-July of NYC. This was no pleasure trip, though, and for my part, not too many social calls. Mostly just the business of the brain, and the doctor.
I liked him. He certainly looked me in the eyes, the ability to do which is a definite asset in a brain surgeon, I've learned, and he even went out of his way to touch my shoulder a few times. My father came and sat in as well, tried to follow along. Trudi came with an arsenal of good questions. I was flanked on either side by support.
What he said was that he would not go the Cerebllum route--that he would, instead, go trans-ocular. This was a surprise. He didn't want to go into details just yet, he said. He wanted to go over it fully with the other doctors. He explained that he and a Dr Soweidane would perform the surgery in tandem. Two for the price of one. I wasn't sure how to feel about this, but it was interesting, at least. He had to speak to Dr. Soweidane and the rest of the board, and then he would get back to me within a few days.
When Dr. Gutin called back the next day, my father and I were browsing around Barnes and Nobles (which my father sometimes calls, to my amused horror, 'the library' "Hey frank, drive me down to the library," he'd said, and for a moment, I thought I'd been teleported straight into some other family). I ran out into the heat and midday bright sunlight of Union Turnpike, plugging a finger into my open ear, trying to block all that Queens nonsense of buses and kids and noise. I was desperate to know something, but what I wasn't sure. I wanted to hear something that would tell me where to have this surgery, one way or the other.
Gutin told me, as he had before, that trans-ocular was the way to go. He gave me three reasons: one, my shoulders were pretty big. Funny. But they'd get in the way if they were doing the cerebellum. Second reason had to do with the angle of my head. It made the supra cerebellum path a bit tighter then was ideal. Finally, he said, Dr. Soweidane felt that the place the tumor was most likely attached would be very difficult to get at from the cerebellum route. And then Gutin said--knowing that I was contemplating surgery in Louisville and that my surgeon here was going to go through the cerebellum--he said, in quite a clear way, that they did NOT feel this was a matter of debate, nor preference. To them, this was the only correct medical option, despite the inherent risks of trans-ocular. My particular case, they felt, was safer this way. Gutin was telling me, in a most professional manner, that my other doctor's opinion was not the correct one.
Vitaz trained in Sloan Kettering. While very good, he did not, to my feeling, have the same level of expertise as the doctors at Sloan Kettering. The level of detail that was presented to me over the phone told me that much at least. It felt as though I had little to debate at this point. I trusted Gutin, and though I'm afraid of anyone touching anything that has to do with my vision, I believe this to be the safest option.
Surgery was scheduled for September 9th, which was the earliest both doctors are available.
Now the only little thing to deal with is the insurance. Which is a whole other story.
Wednesday, June 23, 2010
When Things Fall Apart
Tonight I was reading a book by a Buddhist nun, called, *When things Fall Apart*. A close friend mailed it to me after she'd heard about my brain tumor.
It occurred to me while I was reading that I hadn't actually meditated in some years. Since I was liking this book, and since the book kept coming back to meditation and how it did and did not work, I figured now was a fine time to just sit and actually meditate.
I was fairly relaxed. I found my mind pretty quiet for the first minute or so. A few thoughts came, but I let them pass.
Then I thought about the surgery. I was imagining--as I often do--the little square they'll cut out of the back of my head. I can feel it open up like a little door.
This thought is not remarkable. I have it a lot; I find myself sometimes, often late at night, imagining the hole. I feel it there, under my hair. Then I think back to the first surgery. The light fixture in the hospital room is covered with a screen print of blue sky. Some leaves playfully creep out of the corner. At first I think it silly. But as the pain, piercing and precise, works on my senses, as each second ticks by, spiteful, deliberate--that stupid light fixture is a tiny, but blessed, relief.
The memories quickly turn to imaginings. Imaginings of the next surgery. How will I be able to rest when the back of my head is the wound? Will I have to lie on my stomach? Or will they give me some special pillow with a firm outside and big empty hole in the middle? The pain, I understand, will be worse. The recovery longer. I have never liked pain much. I still feel pretty strongly about that.
This memory/projection is a common flight-of-thought. But tonight I do not even get past the the little door. I stop right there, aware of where my thoughts are heading. And I just notice it--the thought--like I had noticed all the other thoughts before it.
Then--like this was a surprise--I thought, "Oh. . .I'm afraid. I'm afraid of having this surgery." And then I began to feel a burning in my chest. I was shuddering a bit. Not tears, but almost.
I really was afraid. Of course I was. Silly, maybe, not to realize it. But for all the nights my mind had run through those thoughts, idly, almost meaninglessly, like one might run through their grocery list, and for all the moments I told myself in an offhand way, "Yes, I'm sure I must, at some level, be afraid of this," I hadn't really felt it--or believed it--all too much.
But for a few moments, tonight, I did.
I went back to meditating. The crying sensation passed pretty quick. I was lucid again, staring blankly at my wall. Then, more thoughts--I was noticing how the paint job was uneven, and began wondering how to deal with the crown moulding--should I paint it first? How did it fasten to the wall?
Of course--my house. Still quite unfinished, any place I look is a vision of worry and work. Having these things--toolboxes, moulding--cluttering my mind as much as my house, is so common, so constant, it's normally not even something to notice. It's as consistent as my breath. But I am noticing my breath. This is the point.
Of course I am worried about my house. How could I not? I am afraid. I am worried. But weirdly, I have been detached from the awareness of these simple facts, despite how obvious they may be.
Tonight, for a few moments, I felt I was watching myself from above. I saw myself afraid of a major surgery, worried about a ton of work I still had left on my house, and I was OK with that. It was nice to be above it all for a just a few moments, to see myself from the outside. A tiny, but blessed, relief.
I was liking this feeling, this awareness. I wanted to keep going. What else was I feeling, doing? I realized, very quickly, I had almost no other thoughts. Which was because when I wasn't thinking about the house or my head, I was taking pain and anxiety pills and watching TV. When I wasn't doing that, I was feeling bad about the fact that I was not being more productive.
This picture now made sense. My mind is active, alert, but alternatively filled with dread and frustration. After a while, I can't deal with that anymore. So I shut down, become depressed. This is drudgery; it is awful. But at least my mind is quiet. Still, I can only take so much of that, especially since I've been there so many times in the past. So I chastise myself, recognizing that shutting down is making me miserable. Be productive, Frank! Do something! My mind kicks back into gear. I'm reading some, writing some. But soon the thoughts of head and house come back, and we begin again.
Fun!
But I am feeling better. It feels good to have a little grasp of all this.
It occurred to me while I was reading that I hadn't actually meditated in some years. Since I was liking this book, and since the book kept coming back to meditation and how it did and did not work, I figured now was a fine time to just sit and actually meditate.
I was fairly relaxed. I found my mind pretty quiet for the first minute or so. A few thoughts came, but I let them pass.
Then I thought about the surgery. I was imagining--as I often do--the little square they'll cut out of the back of my head. I can feel it open up like a little door.
This thought is not remarkable. I have it a lot; I find myself sometimes, often late at night, imagining the hole. I feel it there, under my hair. Then I think back to the first surgery. The light fixture in the hospital room is covered with a screen print of blue sky. Some leaves playfully creep out of the corner. At first I think it silly. But as the pain, piercing and precise, works on my senses, as each second ticks by, spiteful, deliberate--that stupid light fixture is a tiny, but blessed, relief.
The memories quickly turn to imaginings. Imaginings of the next surgery. How will I be able to rest when the back of my head is the wound? Will I have to lie on my stomach? Or will they give me some special pillow with a firm outside and big empty hole in the middle? The pain, I understand, will be worse. The recovery longer. I have never liked pain much. I still feel pretty strongly about that.
This memory/projection is a common flight-of-thought. But tonight I do not even get past the the little door. I stop right there, aware of where my thoughts are heading. And I just notice it--the thought--like I had noticed all the other thoughts before it.
Then--like this was a surprise--I thought, "Oh. . .I'm afraid. I'm afraid of having this surgery." And then I began to feel a burning in my chest. I was shuddering a bit. Not tears, but almost.
I really was afraid. Of course I was. Silly, maybe, not to realize it. But for all the nights my mind had run through those thoughts, idly, almost meaninglessly, like one might run through their grocery list, and for all the moments I told myself in an offhand way, "Yes, I'm sure I must, at some level, be afraid of this," I hadn't really felt it--or believed it--all too much.
But for a few moments, tonight, I did.
I went back to meditating. The crying sensation passed pretty quick. I was lucid again, staring blankly at my wall. Then, more thoughts--I was noticing how the paint job was uneven, and began wondering how to deal with the crown moulding--should I paint it first? How did it fasten to the wall?
Of course--my house. Still quite unfinished, any place I look is a vision of worry and work. Having these things--toolboxes, moulding--cluttering my mind as much as my house, is so common, so constant, it's normally not even something to notice. It's as consistent as my breath. But I am noticing my breath. This is the point.
Of course I am worried about my house. How could I not? I am afraid. I am worried. But weirdly, I have been detached from the awareness of these simple facts, despite how obvious they may be.
Tonight, for a few moments, I felt I was watching myself from above. I saw myself afraid of a major surgery, worried about a ton of work I still had left on my house, and I was OK with that. It was nice to be above it all for a just a few moments, to see myself from the outside. A tiny, but blessed, relief.
I was liking this feeling, this awareness. I wanted to keep going. What else was I feeling, doing? I realized, very quickly, I had almost no other thoughts. Which was because when I wasn't thinking about the house or my head, I was taking pain and anxiety pills and watching TV. When I wasn't doing that, I was feeling bad about the fact that I was not being more productive.
This picture now made sense. My mind is active, alert, but alternatively filled with dread and frustration. After a while, I can't deal with that anymore. So I shut down, become depressed. This is drudgery; it is awful. But at least my mind is quiet. Still, I can only take so much of that, especially since I've been there so many times in the past. So I chastise myself, recognizing that shutting down is making me miserable. Be productive, Frank! Do something! My mind kicks back into gear. I'm reading some, writing some. But soon the thoughts of head and house come back, and we begin again.
Fun!
But I am feeling better. It feels good to have a little grasp of all this.
Friday, June 4, 2010
After the results
Short version: Last week I got the biopsy results and they came back benign. This means that radiation will be ineffective, so the move is open-skull surgery. The goal is to completely remove the tumor, and hope for a 100 percent cure--snip, snip, suck and done.
It is a tricky lay; the tumor is in the middle of my head. The plan, as it was showed to me on computer screens, is to position me on my stomach, then cut a nice square of bone out of the back of my skull. Then they reach in, cradle my thalamus, snip and tie-off a few arteries, then dislodge my thalamus enough so that they can gain access to the channel leading to the Center of My Brain and the sneaky little tumor hiding there.
Then they take out as much of the tumor as possible. Knifes, suckers, snippers, grabbers. I imagine they look like miniature versions of my house tools.
The snag is that the tumor sits on my brain stem, and that last one percent of tumor bit that's attached to the stem could be very dangerous to remove. So sometimes they will leave that bit--the doctor would not want to risk doing any real damage, like leaving me paralyzed or in a coma. The risk, however, in leaving that last bit is that it might eventually decide to grow again, and some day, we'll have to go through this show again. Still, that's better than poking the inside of my stem and turning me into a breathing sponge.
How tricky this will be will only reveal itself during the surgery. It's one of the many calls the neurosurgeon cannot prepare for. All things are decided while my head is open and I am in that fast and deep anesthetic sleep.
Other facts:
It's an eight to ten hour surgery. The rehab will be more significant than the last surgery, which was quite easy. This time I will have to go to a rehab center and stay for a week or two. There will probably be some balance and coordination issues that might take some months to get back to 100 percent. Everyone is different, is what they tell me. So there's no telling precisely how easy or hard this will be.
There is good news in all this--the doctor did seem to feel that there was a 2 percent of less chance of anything going Very Wrong. (This is the death, coma, permanent disability type-stuff). Going into this, with the research Trudi and I had done, we had found a meta-study of this type of surgery, and in it the red zone percentages were closer to 10 percent. Hence why I've been so afraid of having this surgery.
But our doctor explained that those numbers included all cases--severe or desperate(did he call them hopeless?) cases who were most likely to die anyway, and old people, all of which makes a significant difference in the morbidity numbers. For me, he said, ten percent is not a realistic number. So, in the way of catastrophic possibilities, it's the same as the first procedure--2 percent. Frightening, but doable. So we roll the dice again.
Now, it's a matter of choosing when and where and with whom to have this surgery. I am unable to make any such decisions right now, or indeed, think about things like that at all.
Since Friday I have been very anxious and lethargic. I sleep a lot and do not answer my phone. I don't know why exactly--I was told almost exactly what I expected I would be told.
The previous stage- waiting for the biopsy results--was a safe place. I had made it through the first surgery, and though I knew that more difficult things were to come, I still felt some sense of strength. I had brain surgery; I was fine. I could sit and wait. I could watch TV, play guitar hero, watch movies, walk the dogs, even start a small amount of house work again.
And then the biopsy results. I am filled with tremors. I can feel them in my stomach, in my hands. I have these itches, which I can't place. They're in my hands, but I can't scratch them. They're inside my skin, in places I can't find.
I find it difficult to sit still. I want to do things with the house, but I find that even thinking about a choice, any choice--buy a desk? from where? for how much? Where will I put it? What about the sofa? and when are we doing the painting in the kitchen? did we buy the paint already?
All these things were so easy to deal with before. They were nothing. They were just questions. I thought them over, talked about it with Trudi, weighed the pros and cons and Blam--made a choice. So simple. Things got done.
Now? I feel everything--any one question and its many possibilities, the possibilities of what I could choose, or what it all could become. The possibilities come like an hammering waterfall, pressing and beating on me.
It's been hard to write, hence the week-plus layoff. I start something, then stop, then start again. I cannot finish.
My parents are also filled with anxiety, and talking to them makes my arms itch and I want to hang up the phone.
Here's an example from the house. We have an impressive barge of trash floating in our yard--our discarded carpets, sheet rock, boxes and boxes and tons of bags filled with all manner of house debris. I've been waiting for the pile to accumulate enough to hire a dumpster, and then get rid of it in one big shot.
Well, the other day we had some local boys--not boys by their age but by their good-ole sounding demeanor--who wanted to trim our lawn which had grown up to knee-height in some spots, and also offered to move our trash out to the edge of our property in the alley behind our house. They wanted ten bucks to move this mountain of trash. "Nah," I said. I said no because I had seen what happened to our neighbors who had put a few trash bags at the end of their property line in the alley--someone came along and dumped a ton of crap on them--furniture, bags, boxes, moldy mattresses. I didn't want to see this to happen to me. So I told the guy not to move the trash over. Plus I didn't think that the city would pick up that stuff anyway, and I'd still have to hire a dumpster. What was the point?
This morning, brush and bulky came, and like magic, with a mini-crane, they lifted all the neighbor's trash away. Trudi had called me over, ecstatic to watch. "Wow, look at that!" she said. She clapped and giggled. "It's like the prize game at arcades, where you have to grab the toy with the mechanical arm." We watched it lift a small dresser, hover it over the dumpster, then crush it flat in one squeeze.
"Isn't that cool?" she said.
I sighed. "Fuck, fuck."
"What's the matter."
"Nothing," I said. "It's just I could have had those guys take all this trash out there." I looked at the twin piles of garbage in my yard, just outside my back windows, sixty feet away from the mobile dumpster passing through our alley. It was too late.
"I could have had those guys drag all this out there. We could have been rid of all this stuff. Goddammit. Why didn't I let them take it out?"
Trudi looked at me. I could tell she was shocked. This is not my normal self. I have learned some good ways of dealing with things in life. Partly from learning to deal with my rageing father as a child, partly from twelve step stuff when I was older. But I have learned how to deal with these little life things, how to not let them derail me. It's simple--there's no sense in regretting something's that's done. Learn from it for next time, then move on. I was a pro at this. Not only was the whole garbage situation upsetting, but I understood my reaction to it to be a regression of sorts. I could not handle things I used to handle. I knew better than to be upset over this. I made a choice, it was a mistake, but nothing I couldn't fix. So I'd just have to hire a dumpster and clean it out myself. I knew it wasn't a big deal.
But it felt like it was. I had fucked up. I had not thought things through correctly. I had made things harder on myself, things I would have to deal with in the future.
I walked away from the kitchen, not wanting to see the pile of junk sitting in the backyard.
Trudi came up behind me quick, and gave me her positive thinking stuff. "It's fine, it's no big deal." Of course, I knew this. Which angered me more. I knew this, yet still felt crippled with regret over such a little thing. I wanted to run away from that backyard, get it out of my sight.
I know this is all about the tumor. I know I am afraid if might make the wrong choice, an inefficient choice, like I did here--what would this mean for my life? This place, where I live now, is not as easy a place as it once was.
It is a tricky lay; the tumor is in the middle of my head. The plan, as it was showed to me on computer screens, is to position me on my stomach, then cut a nice square of bone out of the back of my skull. Then they reach in, cradle my thalamus, snip and tie-off a few arteries, then dislodge my thalamus enough so that they can gain access to the channel leading to the Center of My Brain and the sneaky little tumor hiding there.
Then they take out as much of the tumor as possible. Knifes, suckers, snippers, grabbers. I imagine they look like miniature versions of my house tools.
The snag is that the tumor sits on my brain stem, and that last one percent of tumor bit that's attached to the stem could be very dangerous to remove. So sometimes they will leave that bit--the doctor would not want to risk doing any real damage, like leaving me paralyzed or in a coma. The risk, however, in leaving that last bit is that it might eventually decide to grow again, and some day, we'll have to go through this show again. Still, that's better than poking the inside of my stem and turning me into a breathing sponge.
How tricky this will be will only reveal itself during the surgery. It's one of the many calls the neurosurgeon cannot prepare for. All things are decided while my head is open and I am in that fast and deep anesthetic sleep.
Other facts:
It's an eight to ten hour surgery. The rehab will be more significant than the last surgery, which was quite easy. This time I will have to go to a rehab center and stay for a week or two. There will probably be some balance and coordination issues that might take some months to get back to 100 percent. Everyone is different, is what they tell me. So there's no telling precisely how easy or hard this will be.
There is good news in all this--the doctor did seem to feel that there was a 2 percent of less chance of anything going Very Wrong. (This is the death, coma, permanent disability type-stuff). Going into this, with the research Trudi and I had done, we had found a meta-study of this type of surgery, and in it the red zone percentages were closer to 10 percent. Hence why I've been so afraid of having this surgery.
But our doctor explained that those numbers included all cases--severe or desperate(did he call them hopeless?) cases who were most likely to die anyway, and old people, all of which makes a significant difference in the morbidity numbers. For me, he said, ten percent is not a realistic number. So, in the way of catastrophic possibilities, it's the same as the first procedure--2 percent. Frightening, but doable. So we roll the dice again.
Now, it's a matter of choosing when and where and with whom to have this surgery. I am unable to make any such decisions right now, or indeed, think about things like that at all.
Since Friday I have been very anxious and lethargic. I sleep a lot and do not answer my phone. I don't know why exactly--I was told almost exactly what I expected I would be told.
The previous stage- waiting for the biopsy results--was a safe place. I had made it through the first surgery, and though I knew that more difficult things were to come, I still felt some sense of strength. I had brain surgery; I was fine. I could sit and wait. I could watch TV, play guitar hero, watch movies, walk the dogs, even start a small amount of house work again.
And then the biopsy results. I am filled with tremors. I can feel them in my stomach, in my hands. I have these itches, which I can't place. They're in my hands, but I can't scratch them. They're inside my skin, in places I can't find.
I find it difficult to sit still. I want to do things with the house, but I find that even thinking about a choice, any choice--buy a desk? from where? for how much? Where will I put it? What about the sofa? and when are we doing the painting in the kitchen? did we buy the paint already?
All these things were so easy to deal with before. They were nothing. They were just questions. I thought them over, talked about it with Trudi, weighed the pros and cons and Blam--made a choice. So simple. Things got done.
Now? I feel everything--any one question and its many possibilities, the possibilities of what I could choose, or what it all could become. The possibilities come like an hammering waterfall, pressing and beating on me.
It's been hard to write, hence the week-plus layoff. I start something, then stop, then start again. I cannot finish.
My parents are also filled with anxiety, and talking to them makes my arms itch and I want to hang up the phone.
Here's an example from the house. We have an impressive barge of trash floating in our yard--our discarded carpets, sheet rock, boxes and boxes and tons of bags filled with all manner of house debris. I've been waiting for the pile to accumulate enough to hire a dumpster, and then get rid of it in one big shot.
Well, the other day we had some local boys--not boys by their age but by their good-ole sounding demeanor--who wanted to trim our lawn which had grown up to knee-height in some spots, and also offered to move our trash out to the edge of our property in the alley behind our house. They wanted ten bucks to move this mountain of trash. "Nah," I said. I said no because I had seen what happened to our neighbors who had put a few trash bags at the end of their property line in the alley--someone came along and dumped a ton of crap on them--furniture, bags, boxes, moldy mattresses. I didn't want to see this to happen to me. So I told the guy not to move the trash over. Plus I didn't think that the city would pick up that stuff anyway, and I'd still have to hire a dumpster. What was the point?
This morning, brush and bulky came, and like magic, with a mini-crane, they lifted all the neighbor's trash away. Trudi had called me over, ecstatic to watch. "Wow, look at that!" she said. She clapped and giggled. "It's like the prize game at arcades, where you have to grab the toy with the mechanical arm." We watched it lift a small dresser, hover it over the dumpster, then crush it flat in one squeeze.
"Isn't that cool?" she said.
I sighed. "Fuck, fuck."
"What's the matter."
"Nothing," I said. "It's just I could have had those guys take all this trash out there." I looked at the twin piles of garbage in my yard, just outside my back windows, sixty feet away from the mobile dumpster passing through our alley. It was too late.
"I could have had those guys drag all this out there. We could have been rid of all this stuff. Goddammit. Why didn't I let them take it out?"
Trudi looked at me. I could tell she was shocked. This is not my normal self. I have learned some good ways of dealing with things in life. Partly from learning to deal with my rageing father as a child, partly from twelve step stuff when I was older. But I have learned how to deal with these little life things, how to not let them derail me. It's simple--there's no sense in regretting something's that's done. Learn from it for next time, then move on. I was a pro at this. Not only was the whole garbage situation upsetting, but I understood my reaction to it to be a regression of sorts. I could not handle things I used to handle. I knew better than to be upset over this. I made a choice, it was a mistake, but nothing I couldn't fix. So I'd just have to hire a dumpster and clean it out myself. I knew it wasn't a big deal.
But it felt like it was. I had fucked up. I had not thought things through correctly. I had made things harder on myself, things I would have to deal with in the future.
I walked away from the kitchen, not wanting to see the pile of junk sitting in the backyard.
Trudi came up behind me quick, and gave me her positive thinking stuff. "It's fine, it's no big deal." Of course, I knew this. Which angered me more. I knew this, yet still felt crippled with regret over such a little thing. I wanted to run away from that backyard, get it out of my sight.
I know this is all about the tumor. I know I am afraid if might make the wrong choice, an inefficient choice, like I did here--what would this mean for my life? This place, where I live now, is not as easy a place as it once was.
Thursday, May 27, 2010
Anticipation
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.
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.
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."
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