First day of radiation

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.

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.

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.

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.

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.

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.

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.