Gimme Toro, Gimme Some More

Once the date was set, things went pretty fast. My wife's mom and sister, who are a hell of a lot of fun and completely wonderful, said they'd come up while I went into the hospital. My folks, who were equally excellent, offered to take me out for a meal at a restaurant of my choosing before I went in.

Since I had surgery and chemo ahead of me, I opted for sushi. I wouldn't be able to eat raw fish for a while, so off we went. I knew that neither of my folks were all that thrilled with sushi (they ended up going with some baked fish and rice), but it was a heartfelt show of support.

A few days later my mother and sister-in-law arrived. The night before the surgery, neither I nor my wife could sleep. We got up around three and went downstairs to talk.

At this point I thought there was a ten percent chance that I'd die on the table. My wife later told me it was closer to thirty. Regardless, we went over a few things. I wrote down all the usernames and passwords for our assorted online accounts and we talked about my final wishes.

That didn't take long. Mainly because I didn't have any elaborate or dramatic wishes other than "let people take whatever they want to remember me by." To me, it seemed a little pompous to put all this weight on possessions that ultimately didn't mean anything. I thought it'd mean more to my friends and family if they could pick something that reminded them of me. When my grandma died, the one thing I took that reminded me most of her was a funky TV tray with bongos on it. I'd eaten many a Thanksgiving meal off that tray and it was something I always associated with going to Grandma's. I didn't want to deprive someone else of that opportunity to take something.

What's more it still seemed abstract and surreal. I felt like I was watching a movie. I was a little nervous about the operation, but there really wasn't anything to do. There was nothing I could do other than go forward, and crying or worrying wasn't going to make things any better.

Point and Click

After all the tests and back and forth, my neurologist and oncologist agreed that they'd need to do a biopsy on the tumor so the oncologist would know exactly what he was dealing with. They'd been reading up on my special snowflake of a tumor, which was remarkably rare. Par. In order to get that biopsy, they'd have to do brain surgery. The date was set for a morning in June. I had two weeks to get ready.

Since the tumor was in such a delicate spot, they'd go in and get a small chunk of it for the pathologist to study. Then, they'd use that info to determine the best way to get rid of the thing. They'd literally be going through my brain in order to get to it. I would be awake the whole time.

Naturally, I had questions. Would this hurt? Would I be able to feel anything? Would I shit my pants whenever I heard a doorbell for the rest of my life?

Thanfully, the answer was 'no' to all these questions. The brain has no nerve endings, so there'd be no pain and I likely wouldn't feel anything. Your brain is more permeable than you'd think -- the fibers of the tissue have some give and would allow the needle/instrument to go right into my brain without cutting or puncturing any of the surrounding tissue. It'd be like when you insert your hand into a tree or bush -- you can touch the center of it, but when you remove your hand the tree's fine. It's in the exact same shape it was before you put your hand into it. It'd be the same thing with my brain.

However. There was a 30% chance I could die. On top of that, since the tumor was right up against my optic nerve, there was a chance I could go blind. Not the greatest odds, but I didn't have much of a choice. The tumor was growing by the day, and had shown no signs of slowing.

I had a lot of faith in the doctor who'd be performing the surgery, so we set a date. I had a couple weeks to get ready.

Tortilla Flats

As soon as they found the tumor I got started on a regular dose of steroids. It was a small orange pill I took times a day, and the dosage gradually increased. The theory was that it’d help to delay or slow the growth of the tumor.

What they didn’t tell me was that the steroids would screw with my sleep, make me ravenously hungry, gain weight and turn into a raging asshole at the slightest provocation.

I was effectively turned into Dick Cheney but with more hair.

All these things increased in severity as my dosage increased, but it was the sleep deprivation that was the hardest initially. No matter what I’d done during the day – exercised, read before bed, had wine at dinner, abstained from alcohol – and no matter what time I’d go to bed I’d wake up between 2 and 4 and be up for the day.
And as I was losing sleep I became more and more irritable. I wasn’t driving as much since my vision was getting worse. That was probably a good thing, since I’m sure I would’ve wound up in a fight or accident.

But as time wore on, the anger became harder to control. Sometimes I’d be angry for absolutely no reason at all – just a black mood. Other times I’d fly off the handle at the smallest thing. Scariest of all was the loss of control I felt when it would happen sometimes. At its zenith it was like an out-of-body experience; I felt as if I was watching myself behave like a two year old.

Even on a good day, I’ve never been a fan of the public. Factor in the steroids and it made for a bad combination.

One afternoon my wife and I were at the grocery store, looking for tortilla chips. She’d mentioned that we should swing by the health food section of the store. I was tired, feeling lousy and cranky as usual. A young woman was busy stocking chips, and smiled and asked if she could help us. Most of the chips in the bags I picked up had been smashed to bits. My wife said “Oh, we’re just looking for some tortilla chips” and I interjected “Yeah, do you have any bags that haven’t been sat on yet?”

Now, in my defense, the vast majority of the bags had been beat to shit, with small shards of chips clogging the windows of most of them. But still, this woman hadn’t done it. That gave me no right to act like a complete asshole, especially when she was trying to be helpful. As soon as the words left my mouth I felt bad about it, but let my wife do the apologizing. Needless to say, we wrapped our shopping shortly thereafter.

The Wind at Your Back

It's a cliche, but you really can't fight cancer by yourself. It truly does take a team. Not only of doctors, nurses and support staff, but friends and family. Their love and support can truly make a difference in ways you can't expect or even imagine.

But the most important person on your team, and one not everyone's lucky enough to have, is someone that's your advocate. Someone who will fight for you when the doctors are going down the wrong path. Someone to tell well-wishers that you've had enough for the day and need to rest. Someone who insists you need to rest. Someone to complain to. Someone to cry with. Someone who will make that midnight run for popsicles.  Someone that will sit with you as you writhe in bed with a roaring fever from the fucking chemo.

In my case, that person was my wife.

More cliches: marriage is a journey. Marriage is a union. Blah blah blah. Yeah, it's those things, but it's easy to be happy and content and in love when things are going good. That's the easy part. That's coasting. The real test is when the shit not only hits the proverbial fan but keeps hitting it. That's when you find out what both you and your partner are made of.

I was extremely lucky. I married someone who's smart, strong, caring, empathetic and has a strong bullshit detector. Over the course of my treatment, all those attributes came into play. There were peaks and valleys. People I didn't expect anything from came through in ways that were unbelievable. Others I thought I could count on failed spectacularly. My wife was there for every small victory as well as every little defeat.

Not everyone has that. Keep that in mind the next time you hear about someone who's sick. A serious illness in not only a downer, it's a fucking grind for all involved. It gets old. It loses its novelty. The phone calls and cards slow to a trickle after a few weeks, but the illness is still there. Often worse than before. Having an advocate; a partner who stands by you is worth their weight in gold. They deserve just as much recognition for all the bravery you're saluted for as you do. Maybe more. 

And so do your team of supporters. Their goodwill, positivity and smiles -- often the simplest things -- make a bad day bearable and a good day outstanding.

But that's a topic for another post.

Home Sweet Home*

As time went on I felt worse and worse. This was a different kind of discomfort -- an almost indescribable combination of headache, upset stomach, general soreness and that ominous feeling of impending illness you get before you officially come down with the flu.

I felt like Nikki Sixx's liver.

After a couple days of screaming headaches that slowly subsided, I gradually felt better. Just in time to get the results from the spinal tap. There were signs of another tumor in my spinal fluid. Great.

The doctors huddled together. The game had changed.

Now, Dr. Thompson was adamant that a biopsy be performed so he'd know exactly what he was dealing with. That meant surgery. Dr. Greene wasn't thrilled about that -- all along he'd been clear about his preference for avoiding surgery if it was at all possible. But he reluctantly agreed. He'd need to perform a biopsy -- cutting open my skull and harvesting a sample of the tumor so the pathologist could study it -- in order to get a better understanding of the tumor.

Up to now, this had all been a rather academic exercise. I knew I had a tumor and my sight was getting worse and worse, but it didn't really feel "real" until this moment.

* Yes, I know that "Home, Sweet Home" is on the Theater of Pain album, but Shout at the Devil is so much better.

Tiny Bubbles

The spinal tap didn't hurt at all, which surprised the hell out of me. It was a little weird, sure, but I didn't have any pain. Folklore suggested that it was one of the most painful procedures out there. Hardly.

They told me to go home and lay down immediately. The fluid needed to settle, and if I was doing jumping jacks or whatever there was a chance I could get an air bubble in the fluid and that would be a Very Bad Thing. Not wanting to tempt fate, I followed their advice.

We went home and my wife (who truly deserves a blog completely devoted to her awesomeness and support through this whole thing) whipped up some catfish po-boys and I settled in to catch up on It's Always Sunny in Philadelphia.

The next day I felt a little odd -- sort of spacey and I had a slight headache at the base of my skull. I didn't think much of it. At this point, I was feeling strange for all sorts of reasons, so I went to work. We were redesigning our corporate web site and had an important meeting with the developer that day.

About thirty minutes into the meeting I had a headache that was brutal. It was unlike any other headache I've had before or since. It was like having a warm cotton helmet with nails in it placed on your head while someone screwed two inch screws into the base of your skull. I couldn't talk. I couldn't think. I could hardly see. I got some aspirin and went back to work.

We had another meeting after lunch. I mentioned the spinal tap to a woman in the group and was surprised when her eyes bugged out and she said "Oh my God! I wasn't able to move for three days after I had mine!" I didn't think it was that big of a deal. I got through the meeting and went home to lay down on the sweet, sweet sofa in our basement.

Tap Into America

Your brain is swimming in fluid. It's the same fluid that runs through your spine. The doctors recommended a spinal tap to check my spinal fluid to make sure there weren't any other tumors floating around that they'd missed. They wanted to have a complete picture of my situation before they did much more.

Up to this point, I knew a helluva lot more about Spinal Tap, the movie, than spinal tap, the procedure. All I knew was that they were supposed to be excruciating. Hooray. Off I went.

I did the usual change into the drafty cotton apron thing and got wheeled around on one of those beds you always see on TV. Everyone I met was very serious and somber. I wasn't expecting Rip Taylor to be hooting and hollering, throwing confetti everywhere as I was wheeled into the room but damn.

Once I was in the room they asked me my name and birthday for about the tenth time and explained the procedure. They'd insert a needle into my spine and withdraw some fluid they could later use to check for cancer cells. Gulp. Okay.

An older doctor in his early sixties came in and introduced himself. I wish I could remember his name because it turns out the man's a maestro when it comes to spinal taps. More on that later.

They asked me to turn over on the bed and hang onto the big steel bars mounted at the end -- the same kind you see in restrooms and other areas for handicapped people. I'd need those to hang onto while they tilted the table to get my spinal fluid. Turns out your spinal fluid's more like corn syrup or tree sap than water -- very viscous and thick. Tilting the table allows the fluid to flow a little faster. Gulp again.

Oh, and if I wanted, I could just look up on this screen at the end of the bed and watch the needle go into my spine. Gulpity-gulp.

Peter O' Drool

But first, more tests. Since my tumor was so rare, the doctors wanted to find out as much as they could before beginning treatment of any kind.

This was good and bad. Good in that I didn't have to undergo surgery or chemo. Bad, because I was still on steroids, which made me surly and only able to sleep for an hour or two at a time.

It also meant more specialists. The next in line was a neurological opthamologist (try saying that one five times fast). Once again, I couldn't see him for two weeks. In the meantime, my left eyelid was beginning to droop, making it look as if I was either perpetually winking or about to fall asleep.

The sleeplessness was really getting to me, but I tried to make the most of it. Since the tumor was pressing on my optic nerve, there was a chance that I could lose some or all of my sight, either due to the tumor or treatment. Since I had some time, I decided that there was no time like the present to see as many classic movies as I could in the event I might be blind or have poor eyesight for the rest of my life.

I went on a tear. Citizen Kane (terrific), a slew of Hitchcock (Vertigo was overrated, North by Northwest was not, Frenzy is an overlooked masterpiece), Bullit (dated and weak), To Kill a Mockingbird, Sunset Boulevard and so on. Since I wasn't sleeping, not only did I suddenly have time for Lawrence of Arabia (amazing), I could also watch the commentaries. This crash course was one of the best things about that waiting period -- not only was I able to catch up on the classics, but I was able to learn about them as well. Netflix made it even better, enabling me to watch obscure movies or documentaries I'd always been curious about but didn't want to buy and couldn't rent at the usual physical outlets.

It was a welcome distraction from the discomfort and the drama that was about to come.

Dr. T

I was introduced to Dr. Thompson, the radiologist. He was quite serious, very direct and to-the-point. His thick salt and pepper hair showed his age. But after a minute or two he warmed up. Turns out the man can talk about seemingly any topic, and over the course of my treatment we did. Primarily food, wine and restaurants, but we also discussed Italy, firearms, skiing and the philosophy of Ted Nugent in detail. He’s a well-rounded guy.


He’s also extremely passionate about what he does. He’d seen my MRIs and had begun digging through the medical journals to see what the current school of thought was in regard to the treatment of tumors like mine. Since they were so rare, there wasn’t much.

Initially, both he and Dr. Greene were leaning toward a one-time radiation treatment. Medicine has advanced to the point where they can target radiation to a fraction of a centimeter. They would do this with a single, high blast of radiation right at the tumor. In order to avoid zapping a slice of my brain, they’d hit it from multiple angles with something called a Gamma Knife (anyone need a band name?) that, when all the beams met, would burn whatever area they were focused on.

Though I had only a few office visits with Dr. Thompson at this point, he called frequently to keep us updated on his findings and thoughts regarding the tumor. He’s one of those guys where once you’re in, you’re in, so he’d frequently get so excited that he’d revert to medical-ese to describe aspects of the tumor and differing methods of treatment. I, as listener, was just along for the ride on his rocketing train of thought. It was charming and endearing.

I could understand the appeal for him. He didn’t run into tumors like mine every day. This was a challenge.

Finally, we meet.

After a few more vision and balance tests, Dr. Greene got out the MRI scans. It was the first time my wife and I had a chance to see the tumor. It was a white round mass in the center of my brain. Dr. Greene explained that that was good -- a round tumor was easier to kill than one that had tendrils that wrapped around the folds of the brain.

When you've got a brain tumor you take your good news when you can get it.

The bad news was that this was in the very center of my brain, making it very risky for them to try to go after it surgically. One wrong move and I could be blind, lose motor functions or even die. Dr. Greene, though a highly-skilled neurosurgeon, was not in favor of surgery.

However.

There was a type of treatment that went after tumors of this type; ones that were hard to reach. It essentially shot highly-focused beams of radiation from multiple angles that converged on the spot to kill the tumor. Instead of carving your brain up like Swiss cheese, the beams were only effective/dangerous (depending on if you're a glass half-full/half-empty kinda person) when they met. If this was the path they were going to go down, I'd only get one treatment, one shot of radiation.

A ray of hope!

Howling at the Moon

Finally, the day came to meet Dr. Greene. It ended up that he, like many specialists, was in great demand. So much so that he'd spend a day in one office, then the next day in another. I later found out that this sort of rotation isn't all that uncommon.

Of course this meant that we drove to the wrong office for our first meeting. After a harried rerouting, we found ourselves in Dr. Greene's office. Despite the complaints of the anonymous Internet poster, the office looked fine. Really.

He turned out to be a nice guy. He was an average, doctor-ish, nondescript looking guy. Quiet, but don’t you want someone calm doing your brain surgery? I don't want Rip Taylor digging around in my skull.


He had me do a few “look this way” type of exercises, then asked me to take off my shoes. My wife and I exchanged glances for a second. Hers was one of terror.

A word about my feet. They are flat. Really flat. I’ve worn arch supports (actually the same ones) since 1984. I have calluses on my toes that are so thick you can strike a match on them. My toenails, depending on when you catch me, often look more like talons. As they did when Dr. Greene asked to see my feet.

“Oh God,” my wife said.

“What?”

“Your feet,” she laughed, then shook her head. “They’re so nasty.”

“But they’re my only form of defense against predators,” I said.

An ever-so-slight smile flashed across Dr. Greene’s face. He asked me to perform a few more movements to determine what type of damage the tumor had done. Since it was in the center of my brain where all sorts of functions converged, anything could happen. Turns out I was okay for the most part. My balance and motor skills were okay.

Only thing is that he wanted to get a second opinion. He referred me to Dr. Thompson, the radiation oncologist who would be part of the team that would treat me. Dr. Greene and Dr. Thompson were going to compare notes and discuss the various methods of treatment to figure out what was best.

The Waiting is the Hardest Part

Problem was, Dr. Greene couldn’t see me for at least two weeks. Under normal circumstances that wouldn’t have been that big of a deal, but in this instance, two weeks was a long fucking time. My wife and I called around to other doctors in an effort to speak with someone sooner and got similar responses. We begged Dr. Greene’s receptionist for an earlier appointment. Sorry, this was the best they could do. So we waited. In the meantime, I got started on steroids.

I had something growing in my head I wanted the damn thing out. Mine wasn't as big in the rarified world of brain tumors, but it was still strange knowing you have something growing inside your head that shouldn’t be there.


The days crawled as we waited for Dr. Greene. Each day seemed to take on greater importance. My eyesight was deteriorating and I had to work harder and harder to keep my left eye open. My eyelid was starting to droop and I looked like a drunken, lazy pirate. If I didn’t focus on keeping my eye open it would sag – almost as if I was falling asleep. I tried to drive as little as possible and just waited.

I tried to find patient reviews of Dr. Greene on the web. There are sites where you can comment on various physicians in your area with all the same insight and vitriol normally reserved for bad pizza joints. Predictably, the only comments I found were half-assed. Most were just one or two sentences; the most cohesive one was a lengthy rant on Dr. Greene’s alleged cold demeanor and choice of decor. Apparently it was sparsely decorated, and that didn’t measure up to the anonymous poster’s idea of what a neurosurgeon’s office should look like.

At this point he could’ve had floor-to-ceiling Tom of Finland prints, rugs made of baby seal pelts, drank blood and dressed like Cher. I didn’t really care – I just wanted the goddamn tumor gone.

The Plot Thickens

About a half hour after I got back to work, Dr. Andersen called. They had some questions on the MRI and wanted to get another scan, this time with color. The dye would give them a better picture of what was going on in my head. Wouldn’t hurt. Wouldn’t take any more time than the last one did. I went back.


Same drill. I put my stuff in the locker, went into the room and got on the table. This time I asked for a rock station. The attendant took my hand and found a vein.

“Some people say they get a weird taste in their mouth when they get the dye injected,” she said. “But other than that you shouldn’t have any symptoms or a reaction,” she said as she injected me.

Sure enough, about sixty seconds later a strange, metallic taste bloomed in my mouth. It slowly subsided and we started the scan as John Mellencamp sang about pink houses for you and me.

There was an awkward silence as she unhooked me from the machine and we walked to the locker area, so I turned and asked her: “do you ever mess with people and tell them that everything’s going to taste like pepperoni for two days afterwards?” Either she didn’t see the humor in it or she was taken aback. She didn’t laugh. She just gave me this confused “what the hell was that about?” look and said “Uh, no.” I thanked her, got my stuff and left.
This time the drive back to work was a little more stressful; a brain tumor was starting to sound like a strong possibility. I didn’t really know much about them other than the fact that they were bad, really bad, and that you could die from them. Whenever someone got a brain tumor on TV, that was it. They were dead within minutes. If I had one, was it the size of a grape? An orange?

I wasn’t really having too bad of a time, all things considered. I wasn’t having headaches or seizures, the two symptoms I most associated with brain tumors. I wasn't dizzy. Other than the eyesight issues I felt fine. Deep down I thought it’d wind up being something goofy, like I ended up with the wrong eyeglasses prescription or something equally minor.


I’d been back at my desk all of forty minutes when the phone rang. It was Dr. Andersen again. “Kyle, we looked at the second set of MRI scans,” he began in a measured, serious tone, “and it looks like you have a small tumor in the center of your brain. It’s in the pineal region.” He calmly explained that it was still relatively small – about the size of a gumball – but that its location explained why I was having vision problems. Essentially, it was taking up space normally reserved for optical functions and it was putting pressure on the optic nerve so things weren’t functioning the way they should.

Predictably, my next set of questions were along the lines of “how the hell are we going to get this thing out?”

“I’m going to refer to you to Dr. George Greene,” he said. “He’s one of the best neurologists in town. If I had to see a neurologist, he’s the one I’d see,” he said.

Turns Out There's a Shitload of Words That Rhyme With "Outlaw"

I went to see my primary physician, Dr. Andersen. He asked me all the usual questions – how had I been, any illnesses, etc -- and we did the old “turn and cough” bit. Everything looked pretty good though he did want me to get a colonoscopy soon due to my family history. Fine. Then I mentioned the vision thing. He didn’t offer any conclusions or ideas about what could be causing it. He had me look left and right a few times, asked if I’d had headaches or dizziness, then paused for a moment and thought to himself.


He asked what I was doing that afternoon. Did I have time for a quick MRI?

A couple hours later I was in a medical imaging facility in a strip mall. With the flat screen TVs, tasteful tile and coffee bar it felt more like an upscale salon than the place where they scanned you for all sorts of tumors, growths and other malignancies.

After about five minutes, my name was called and I was led to a little wall of lockers. I was instructed to remove my glasses, watch, and all other metal objects. I put my stuff in a locker and walked into the MRI room. I was greeted by a massive white machine with a donut-shaped hole in the center. In front of the hole was a long, rather narrow extension that served as a bed. Had I known this was going to be the largest MRI I’d ever get to experience I would’ve taken a mental note to enjoy myself more.

The attendant produced a mesh hockey goalie-type mask and some earphones. She put the earphones on me and attached the mask to the bed. She said the procedure would take about 15 minutes and asked if I had a musical preference. I said I didn’t really care. I was treated to 15 minutes of new country. Another mistake I would not make again. Or so I thought.


She left the room and I slowly slid into the MRI. I couldn’t see much through the mask and couldn’t move my head. I’ve never really had problems with claustrophobia and this didn’t really change that. But I could see how someone who was uncomfortable in tight or small places could have a hard time. I tried to relax and settle in.

The machine clicked and whirred. There was no discernible rhythm or pattern to it, but it wasn’t annoying and the music masked most of the sound. I tried to stay still and concentrate on Indian Outlaws and life on the Chatahoochee.

Then, I was done. I felt fine. I asked the attendant if she saw anything and she said she couldn’t really comment on the MRI. That was the doctor’s job. Fair enough.

Not thinking much of it, I went back to work. I mean, really, what are the odds that I’d get a brain tumor? Only people in melodramatic Lifetime movies on Saturday afternoons get brain cancer. Colon cancer was another story. Considering all the other health issues I’d inheirited from my father (allergies, asthma, etc) I figured that was pretty much a given. But a brain tumor? My dad was associated with the other end of the body.

Onetwothreefour

It started in the car.

When I’d look over my shoulder to change lanes I’d have trouble actually seeing what was going on for a second. It was as if there were two images and my eyes had to adjust – sort of like a Viewmaster the first time you try it. There would be two independent images at first, and then they'd slowly coalesce into one. I only noticed this phenomenon when I looked to the far left or right. When I looked straight ahead, whether I was driving or standing still, everything was fine. I chalked it up to the new glasses. We had a vision plan that I hadn’t taken full advantage of at work and I figured I could use a new pair. I’d gotten them a few months earlier. Oh well.

Except it didn’t get better. It was starting to get irritating. I finally mentioned it to Amy, a co-worker. “You better get that checked out,” she said. “That can be a sign of a brain tumor.”

“It’s not a tumah!” I joked in my best Arnold Schwarzenegger/Kindergarten Cop voice. I mean, come on, what're the odds of that? Only people on soap operas and cell phone users get brain tumors. I wasn't on a soap and I didn't have a cell phone. Couldn't be me.

Like most men, the only time I ever made a trip to the doctor was when something was really wrong – if it was a cold or flu or some immediate, obvious thing. I hadn’t had a physical in years. I mean, why? I was in my late 30's, ate a pretty good diet and worked out on a semi-regular basis. Why go if there isn't a problem?

But the potential for cancer was there. Two years earlier I attempted to reconnect with my biological father and over the course of our brief email exchange he'd told me about a litany of potentially heredity health issues, culminating with colon cancer, which had killed his mother. He was now battling it himself, along with pancreatic cancer.

“You really should get tested,” he had said in an email.

I blew it off, thinking I was too young to worry about any of this and that it wouldn’t happen to me.

But still, the eye thing was really getting irritating.

I made an appointment.

I Can't Feel My Head, But I Don't Miss It

I found out I had cancer -- a pineal germinoma to be exact -- in the spring of 2008. This blog is an attempt to help me remember that strange period and hopefully help someone else in a similar boat.