Monday, May 10, 2010

waiting. . .

Went to the neuro-center today. Basically nothing new, just went over a lot of the same stuff, just in more detail. I did find out why they are drilling two holes in my head--the first is for the the endoscope to reach the ventricle to create the drain, the second is to access the tumor. Also, I learned the scope is a rigid object. For some reason, I had it in my mind as it being snake-like. Instead, it is a solid hollow tube into which they can insert whichever tool they need at that time--a light, a grabby hand thing (like the kind park cleaners or old people use, I imagine), a suction tool. The doc told me there were around ten or eleven, all told.

I tried to find out as much about his plan as I could. But he basically explained he had to play it as it laid--once he got in there and got a look at the inside of my head, that would dictate what he would do. So I imagine him as a jazz guitarist- a lot of improvising. It's a bit scary, this freestyle surgery.

Vitaz is not exactly a people person. He doesn't look me in the eye when he speaks. He often speaks to me with his eyes closed. But I'm confident now--after plenty of vetting--that he is an excellent surgeon. So who gives a shit about his ability to make me feel good about him. What matters is how good he is at getting a piece of this tumor so we can best figure out what to do next.

So we're trying to schedule the surgery soon. I was hoping tommorrow, but obviously that's not happening. It's also looking like Wednesday won't happen either. I expect to find out more tomorrow.

My father is arriving tonight. He hasn't flown in, I don't know, maybe 35 years. he didn't even have an id. He had to today go to DMV, get a temp id, get an ok from the airline that that would be ok, then booked a flight. He was very nervous about having to change flights. He was very nervous about the whole thing, really.

I hope having my father here will be more of a help than a hindrance. I worry he'll need attention, and I don't have the time or ability to give it right now.

Gotta run. I do not have enough time to write.

Friday, May 7, 2010

the technical view of a Pineal Gland Brain Tumor (a what gland?)

Here's what I know about this tumor.

I have a rare disease! Pineal gland tumors total less than 1 percent of all brain tumors. I always wanted to be special. Luckily for me, it's rare in a good way. I believe it to be more treatable than most brain tumors.

First thing I found out was that the word "tumor" itself comes from "tumescence"--to swell. Up till now, this has always been a desirable thing for men. We take pills to have it; now it's fuck all to get rid of it.

It's not enormous, but it's quite large. 3cm around. Ish. I've referred to it as the golf ball in my head.

This tumor is sitting on a little something called a pineal gland. (Pronounced either PIE-knee-ul or PIN-e-ul.) This gland creates melatonin, but no one really knows for sure what that stuff does. It might help with sleep cycles. It's not clear.

For me, the gland's purpose is to play host to mass of cells I clearly do not need. If I personified them, they'd be party crashers, drinking up my brain booze and clogging up my toilets. If I technofied the tumor, I imagine a possessed xerox machine. My cells are copying themselves endlessly. Either they think they are helping--they think other cells have died and they're honorably taking their places--or they are simply in open revolt.

Perhaps it's a misunderstanding. Mass mis-communication. I would like to talk to them if I could. But at this point, it just may make things worse.

So this tumor sits smack in the middle of my head. When the neurosurgeon first showed me an MRI image of it, I said, "Is it possible for it to be more in the middle of my brain?"
He pointed at a spot an half inch over. "Well, it could. . ." Then he laughed. "No," he said. "I guess not. Yeah. It's pretty much in the middle."

Such audacity! To insinuate yourself into a delicate space where you are clearly not wanted and where you do not belong. This tumor has earned my respect far more than my anger or fear.

The radiologist report said the tumor was "well-marginated," which made me recall all my old workshop manuscripts with corrections or "+" 's all across them. But the radiologist meant the tumor was very smooth and even. Such sense of order--perhaps it's British. This is not a wild prison break, each one breaking off in their own direction. No, these cells are a collective. They're Marxist cells. Perhaps this has been affecting my politics all along?

Really, and this is silly, but I feel proud of my organized cells. They are really like me-you should see my finances. I love tax time. Seriously. I have little folders I keep and when I finish packing them up I run my hand across their covers, lovingly. Everything in its right place, at least sometimes. I like this kinship between me and my tumor.

I talk about my tumor's smoothness on the phone to whichever random friend I haven't spoken to in years is calling me at that moment. "It's grown so evenly," I say. "You should see the pictures."

These cells have respect for uniformity. I believe in finding a personal philosophy and shaping your life according to that philosophy. If you see these cells, man, it's clear they have a vision and they are sticking to it. So many admirable qualities, these cells.

Of course they do complicate things. Remember that clogged toilet metaphor? It's actually quite appropriate. Next to this Pineal gland is the narrow tube that connects some ventricular sacs to my lovely and slightly curved spine. The sacs hold cerebrospinal fluid which--in the overly-literal and latin way of medical terms-- travels from my brain to my spine. It bathes my brain in a nice warm fluid, and provides some nutrients to my back. The tumor has clogged the tube.

It's basically a plumbing issue. The fluid builds up faster than it drips down, and my ventricles keep getting a little bigger and a little bigger to hold more fluid. So there's pressure. That's where the pain stirs when I bend over or strain, or, much more annoyingly, laugh too hard.

My horizontal MRI looks like I have two bananas in my brain. Those are two of my ventricular sacs. They should look more like grapes.

The doctors all think this has been growing for years. They think this because of the size of those bananas. Between them and the golf ball, my head is rather crowded. Stuff is pressing on every part of brain. If I were a pinball machine, we'd be breaking all the high scores.

"Well," one doctor said to me over the phone after looking at my MRI. "You don't sound incoherent." I am expected to be so. I should have double vision. I should be falling over, my limbs shaking involuntarily. The fact that I am not tells them that this has been happening slowly, a bit here, a bit there. My brain has been adapting for years. I'm a bit proud of that too. I am sick, but remarkably well.

So here's what's going to happen. First we have endoscopic surgery. Endoscopy, "to look inside"--once again, those damn literal medical terms--because, it's a mini camera. At this rate, they should just call it a look-insidey machine.

It's a tubular camera armed with a tiny light and, I imagine, a super tiny little knife. They will make two incisions in the front right of my head. (Why two, I failed to ask.) Then the tube goes in, and works it's way into the ventricular sacs. Once there, they will puncture a little hole in the sacs, so that the fluid will drip down, around the tumor, and eventually wend its way into my spine, where it belongs. Blood can complicate things--if I bleed too much, it will block the camera, and the surgeon will be working half blind. Sometimes they have to--for lack of a better term--pull out.

This puncture method beats the hell out of the old way they fixed this, which was to put a shunt--a long plastic tube that would run all the fucking way from my brain to my stomach. There is a small chance--10 to 15 percent, I am told--that this new drain will fail. It can swell up or scar over time. At that point they have to go ahead and make new holes and put a the shunt in anyway, just as a precaution. Brain surgery, small or large, will always linger on the horizon.

After the drain is created, the second order of business is to get a sample of this fucker. The tumor, I mean. There are 15 types of Pineal gland tumors. Most fall into two major categories, of course. Benign or malignant. Oddly, in my case, you want it to be mildly cancerous. Because the mild cancer is very receptive to radiation--like a 90 percent cure rate. So no open brain surgery.

But if it's benign, well, it has to come out. And that would mean a journey to the center of my skull. For that, I'd probably want to find the magic Pineal gland center of the world, if such a thing exists.

My first neurosurgeon felt very confident my tumor was the good cancer kind. My second felt equally assured that it was benign. I guess I'll call it a coin flip.

A New Day

It is Wednesday morning. The sun is barely up, shining through the front window which is covered in a thin red shawl. The shawl serves as a make-shift blind in our make-shift bedroom. It casts everything in magenta. Trudi's leg is lying against mine, and her breath is warm against my face. I'm lying on my side, with my hands tucked into the cool folds of my pillow. There is the steady and soft whooshing of traffic outside. The dogs stir, yawn, climb up from under the covers. I feel one curl against my chest and sigh deeply. Everything feels massively peaceful.

The morning's dreams float away; thin clouds of faces and shapes scudding off. The word "tumor" drifts above me, barely a wisp. I expect it to fade away, like the other dreams. Just another fragment that will become lost, that had meaning just moments ago but now is nothing but a unintelligible sliver of a reality that no longer matters.

All at once, I wake rapidly. I sit up on my elbows, and look at Trudi's face--she's asleep and quite still. The dogs are tired, but their eyes are open, watching me, ready as always for their walk.

I am awake now, and the that word, tumor, is stubborn. It settles in me, on top of me. It covers me. Suddenly, all the memories of the previous day come back. The first neurosurgeon, the second, the procession of pre-op tests, all those phone calls to our parents.

I close my eyes. Just five more minutes, I think. Just five more minutes. But I know it's time to start the day.

Thursday, May 6, 2010

Wills

It was Tuesday, shortly after we had hastily agreed to have surgery the following morning. We were dazed, shuffling along the pre-op test conveyor belt--x-ray to blood test to other samplings I do not recall. I had just successfully peed into a small cup(after downing a mediocre cup of hospital coffee just to make that happen) and placed my urine in a funny little panel in the bathroom wall.
"I just don't want to be in a position where I am unable to do what I need to do to help you," Trudi said as we headed towards the next stage, not clear at all where that was.
Trudi has only asked me for this one favor through all of this. She wants fill out whatever legal document that would give her the power to make any medical calls necessary if I become incapable of doing so myself--a small, but definite possibility.
"Why?" I said. I was angry. "I can't think about this now," I said, as I walked off in the direction of the elevator, leaving her a few paces behind. It was the first time I'd snapped at her in all of this. I heard her take a short tight breath, so I stopped to face her. She looked at me with that face she makes--it's red and sad and a little contorted. It means I've hurt her, but she understands I didn't mean it to hurt her. She's trying to be rational, to not take it personally, to not react, to know there are bigger things going on than her feelings. That's why her face gets like that. That's hard for anyone, and I feel bad for putting her through all this. She nods, and squeezes out a pained smile. We walk off toward the elevator together.

Still, I felt bothered by the idea. I had much more pressing things to think about. The question of whether to "pull a plug" or not meant nothing. Coma, sleep, and death were the same. I would not be conscious. If there was some kind of afterlife, or next life, or portal to another existence (which is how I prefer to think of it, if I'm trying to be positive) then that would be the first thing I would experience. For me, it would be a near timeless transition to either a miraculous recovery or to the next life, or, equally likely, to nothing at all.

I realize now in this writing that this was a selfish line of thinking. Yes, to me it does not matter. (Barring the miraculous recovery part). But to others it would matter. How would my loved ones live out their days with their son, boyfriend, sibling, or friend, breathing away mindlessly in some sanitary and lonely room? How would that feel to them, to always have me hanging there, not dead, not alive? Why would I rob them of the relief of my death? For what? A tiny chance that there might be some miracle?
I have been known to enjoy myself some gambling from time to time, (money comes and goes fast at a Vegas craps table) and I have always been good at calculating odds. You always have to maximize the risks and rewards if you want to have a chance to win anything. So I wouldn't wager everyone else's happiness for a fraction of a shot at a miracle. While the concept of some kind of afterlife may be a gamble as well, I'd take those odds, and feel at ease with the knowledge that the people I loved could have some peace. Which is all that really matters.

The idea of signing something has been brewing for the last day or so. It's now clear that Trudi was right--in that I should fill something out that states my intentions over life support and finances and things like that. I needed to make that decision, or else it would be made for me. I would lose more control--which was what was happening at each turn. I did not want to lose any more.

About that decision:

I love my parents deeply, and do not doubt their love for me for even a second. But I respect no one's rationality more than Trudi's. We've been making nothing but difficult practical decisions together for the last year--mostly involving our unfinished house. I know she would be careful and unemotional in making any decision for me--which is exactly what I would want. I know she would have a strong, generous and loving support group to make any tough decisions as well.

So this morning, I told Trudi to go ahead and set-up a meeting with the lawyer today.

I was lying in bed, eating some McDonalds breakfast I had asked Trudi to get me earlier, while I wrote some e-mails to people I hadn't spoken to in years. Trudi handed me the phone. "The lawyer needs to talk to you," she said, and then left the room to give me privacy. I thought of putting my food down, but I had a right to be rude and eat on the phone--these were tough times.

So there I was, chomping away at an egg and cheese biscuit and a hash brown, and asking some terrible questions. I've had to ask a lot of terrible questions in the last few days. But these felt worse:

Q:So, say I'm in a coma--what document dictates when the plug is pulled?
A: That would be the living will, sir.

Q:What if something happens during surgery? Like say, there's a complication, and they need to ask what to do?
A: Well, if they're in surgery, the doctors will decide. (Okay, that was a stupid question.)

What about money? What is a power of attorney? Does that mean that person get all my money? How do I go about deciding financial maters?

What if I don't die--or if I'm not in a coma. Let's just say I'm alive, but incapable of making decisions for myself. Like brain damaged. What happens then?

Yes, I did say all these things, and quite calmly. I guess this is all starting to become normal.

Wednesday, May 5, 2010

A time line to date

April 17th: I go to see a neurologist, who gives me an EEG and a clean bill of health.

Apr 26th: I go to see a Primary car doc, just to get a check up. He dismisses the EEG, orders an MRI.

Saturday, May 1st: I get my MRI. It makes funny noises that I mostly enjoy.

Monday, May 3rd: Results come back. I am told I have a growth, and will likely need surgery. Referred to Neurosurgeon, Dr. Wayne Villanueva at the Neurological institute of Kentucky.

Tuesday, May 4th, 8:30 am: Go to see Villanueva. He is careful and precise. Trudi and I like him very much. He recommends endoscopic surgery as a first step to deal with the hydrocephalus and to get a biopsy. He refers us to another surgeon at the institute who specializes in endoscopy.

Same day, 1:30 pm: We go to downtown Louisville to meet Dr. Todd Vitaz. He is brief and under some time constraint. He schedules us for surgery the following morning.

4:30: We decide this is too fast and postpone the surgery.

Tuesday, May 4, 2010

A history

Waring: This may not be edifying.

Long shot: Louisville, Kentucky. Suburb. Focus on a manicured house. Cut to: closed bathroom door. Pathetic whimpers coming from inside. That's me--I'm on the bowl. I'm moaning because I've having a bit of trouble, you know, getting it out. That's normal. What is not normal is the pain. It's in my head, which feels like a balloon ready to burst. I stop pushing, grab a hold of the towel rack, and take a series of deep breaths. The pain fades quick as it came. I push again--some things are stubborn--and there's the pain again. Someone's taken a plumber's wrench to my temples. I breathe, pain goes, I push, it comes, and it's getting worse as we go. This lasts a very long and memorable twenty minutes.

My girlfriend, Trudi, stands outside the door and calls my name, wants to know if I'm alright. She's afraid. I feel this with the cracking of her voice. It sounds fragile. I hold the wall for balance and look at myself in the mirror, gasping, flush and weary. I tell her that I am fine, but as the words come out of my mouth I do not know if they are true.

Let me be clear. I am not a man with a history of excessive self-preservation. With the aid of the wondrous array of chemical products available to the modern youth, I have--in my past--enthusiastically propelled myself to the brink of physical and mental decay, despair and despondence. I've even snorted enough powder of various sorts to wrack my nose out of shape (I needed surgery to complete my clean-up). But even at my worst, lowest and most depraved moments of ruin--I've never felt how I feel in this bathroom right now. *Destructible*.