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.
Thursday, December 23, 2010
Sunday, December 5, 2010
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.
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.
Monday, November 22, 2010
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.
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.
Tuesday, November 2, 2010
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.
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.
Friday, October 22, 2010
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.
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.
Saturday, October 9, 2010
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.
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.
Friday, September 24, 2010
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.
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.
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