You gain some and you lose some when you've got cancer. You gain time, since you're laying around. It's a terrific opportunity to catch up on reading or those movies or a series like The Wire that you'd always meant to watch. The days can crawl by. You certainly gain knowledge and perspective.
But you can lose plenty too. For some it's weight and for others it's friends. It's often both.
You can't predict how someone will react when they hear you have cancer. A lot of people will feel sorry for you and offer help. Others will be faced with their own mortality and promptly freak out. You won't hear from them for a while, if at all. They'll avoid contact with you because it makes them feel uncomfortable. They'll wait until you're better to reconnect. At least that's what they're telling themselves.
Others won't really care at all. It's shocking and it stings, but it's true. The reasons for that differ from person to person, but the blame can be laid squarely at their feet. Maybe they're self-absorbed. Maybe they didn't like you that much in the first place. Maybe it's something else entirely. Regardless, it's not your fault.
You find out who your true friends are real quick.
The good news is that you'll be truly surprised by who comes through. Casual acquaintances, co-workers or neighbors you barely knew, friends of friends you've never met -- they will continually surprise and humble you with their love, support and encouragement. All of which will come from a very positive place.
Those are the people to dwell on. Those are the people you need to send the thank you cards and emails to. They're the ones that can help you get better.
As for the other half, "The ones who love us least are the ones we'll die to please," Paul Westerberg once sang and it's true. Focus on the people who are supporting you and forget those who aren't. Energy is a precious commodity when you're undergoing treatment, and it's best to focus that in a postive way.
As for the others? Fuck 'em. Write them off without any guilt.
Monday, December 5, 2011
Monday, October 3, 2011
Surprise, surprise, surprise.
One of the most irritating aspects of health care is the frequency of the surprises. Sometimes they're good (you're going to have a baby! You don't have lupus!) but more often they're bad (it's a cancerous tumor! You have gangrene!).
I don't know if it's because patients blur together and nurses and doctors forget what they've said to which patient or what, but I was continually surprised. I'd go in for an MRI only to find out it was a CT scan and that I had to drink some nasty syrup. I'd be told a test would take fifteen minutes and it'd take an hour and a half.
The latest surprise happened a full two years after my treatment had ended. I still go for occasional MRIs that are getting further and further out in terms of time, but they're still keeping an eye on me. The last time I went for my usual MRI I found out that I had a bonus test -- this one for bone density. Nobody had told me about the test, let alone that radiation and/or chemo could have an adverse effect on my bone density back when I was getting treated. They didn't tell me I was getting tested for it now, either. Thankfully, it's nothing more than a glorified X Ray, so it was painless. That, and the fact that I consume ice cream as if it's my job, ensured that my test turned out fine.
To that end, here are 10 questions you should ask your doctor. They're not hard. If he/she can't answer them, find another doctor. I don't mean to get all Star Jones on you, but really, they need to spend a little more time explaining this stuff so you're able to make an informed decision.
I don't know if it's because patients blur together and nurses and doctors forget what they've said to which patient or what, but I was continually surprised. I'd go in for an MRI only to find out it was a CT scan and that I had to drink some nasty syrup. I'd be told a test would take fifteen minutes and it'd take an hour and a half.
The latest surprise happened a full two years after my treatment had ended. I still go for occasional MRIs that are getting further and further out in terms of time, but they're still keeping an eye on me. The last time I went for my usual MRI I found out that I had a bonus test -- this one for bone density. Nobody had told me about the test, let alone that radiation and/or chemo could have an adverse effect on my bone density back when I was getting treated. They didn't tell me I was getting tested for it now, either. Thankfully, it's nothing more than a glorified X Ray, so it was painless. That, and the fact that I consume ice cream as if it's my job, ensured that my test turned out fine.
To that end, here are 10 questions you should ask your doctor. They're not hard. If he/she can't answer them, find another doctor. I don't mean to get all Star Jones on you, but really, they need to spend a little more time explaining this stuff so you're able to make an informed decision.
Thursday, September 1, 2011
And Now the Downside
Chemo and radiation come with side effects. What's so frustrating is that they vary so widely. It truly differs from person to person. One person's able to continue working and functioning fairly normally while another is bedridden. These are by no means all the side effects, and you might not have any of them. Here's what I dealt with.
Hair Loss. This is a big one, particularly for women. As a guy, this was certainly weird, but I ended up just shaving my head and going with it. What you don't really think about is that this covers all your hair, up to and including eyebrows. I even lost a lot of my eyelashes. That might not sound like much, but believe me, you'll have a much greater appreciation for the awesomeness of eyelashes when they're gone. Virtually everything seems to go into your eyes.
Mouth Sores. I only had this for two days, but what a 48 hours that was. Cough drops, popsicles and fluids helped.
Constipation. Chemo and cancer drugs will make you a connoisseur of fiber in all its forms. Fruits, vegetables, FiberOne cereal...I tried it all. There were moments where burlap and rope with ranch dressing were considered. Drink as much fluids as you can and try to move around. Failing that, the Walgreens version of Senokot helps. Kashi cereal does have a fair amount of fiber, but it tastes like day-old hay. The folks in those commercials may well be scouring the globe looking for stuff to put into cereal but they're most certainly avoiding spice markets and uncovering new flavors. Kashi is only slightly better than a hobo's sock.
Loss of Taste. This was one of the toughest for me, and it didn't really kick in until a month or two after I'd finished radiation and chemo. The hits keep coming. For one awful month everything tasted like really bland roast beef. I'd be able to faintly taste things, but the bland roast taste overwhelmed just about everything. The other flavor I was able to taste was a strange kind of medicinal nothingness. I'd be able to sense textures, but that was about it. Mercifully, it slowly went away.
Loss of Hearing. Two and a half years after finishing chemo, this one's still with me. There really isn't much that can be done about it, so I've learned to live with it. It's tinnitus -- a constant ringing -- as opposed to true hearing loss. Some locations, like bars and restaurants with lots of concrete and hard surfaces, sound like everything is at the same volume. The person across from me and the person talking to their friend ten feet away all seem to be at the same volume. It gets overwhelming at times but you learn to deal with it.
Memory Loss. This is one of the more well-known side effects of chemo. Sometimes called "chemo brain" or "chemo fog," you'll find it hard to remember things. You won't forget your name or who you're married to, but short term memory and small things -- like what you talked about when you saw your friend last week or the status of a project from months ago -- may be underwater or gone altogether. Again, you'll have to learn to adapt. Listen closely, repeat things and make notes.
Nausea is probably the thing people most associate with chemo. I never felt truly sick to my stomach and I never threw up from chemo. But man, oh man did I feel bloated. It was as if I'd stuffed myself at three seperate Thanksgiving meals. It was this horrific feeling that I'd burst at any second. It came and went, but the weekends right after treatment toward the end of my run were the worst. I didn't have the energy to move around much, so all I could do was ride it out. Sparkling water helped to some extent, as did tea with a little raw ginger in it.
Fatigue is another one. You won't sleep all the time but you'll sure feel worn out. Try to do something every day, though. Even if it's no more than getting the mail. The more active you are, the sooner all that crap can get worked through your system.
Change in sense of smell. This was one of the cooler side effects, if there is such a thing. One day I was walking the dogs and a car drove by with the window down. I could smell the guy's cologne with such clarity, it was unreal. I had an almost superhuman sense of smell. It didn't inspire me to go solve crimes or anything, but it was kind of fun. Of course there's a flipside. For a little while I couldn't smell much of anything. It slowly equalized.
Hair Loss. This is a big one, particularly for women. As a guy, this was certainly weird, but I ended up just shaving my head and going with it. What you don't really think about is that this covers all your hair, up to and including eyebrows. I even lost a lot of my eyelashes. That might not sound like much, but believe me, you'll have a much greater appreciation for the awesomeness of eyelashes when they're gone. Virtually everything seems to go into your eyes.
Mouth Sores. I only had this for two days, but what a 48 hours that was. Cough drops, popsicles and fluids helped.
Constipation. Chemo and cancer drugs will make you a connoisseur of fiber in all its forms. Fruits, vegetables, FiberOne cereal...I tried it all. There were moments where burlap and rope with ranch dressing were considered. Drink as much fluids as you can and try to move around. Failing that, the Walgreens version of Senokot helps. Kashi cereal does have a fair amount of fiber, but it tastes like day-old hay. The folks in those commercials may well be scouring the globe looking for stuff to put into cereal but they're most certainly avoiding spice markets and uncovering new flavors. Kashi is only slightly better than a hobo's sock.
Loss of Taste. This was one of the toughest for me, and it didn't really kick in until a month or two after I'd finished radiation and chemo. The hits keep coming. For one awful month everything tasted like really bland roast beef. I'd be able to faintly taste things, but the bland roast taste overwhelmed just about everything. The other flavor I was able to taste was a strange kind of medicinal nothingness. I'd be able to sense textures, but that was about it. Mercifully, it slowly went away.
Loss of Hearing. Two and a half years after finishing chemo, this one's still with me. There really isn't much that can be done about it, so I've learned to live with it. It's tinnitus -- a constant ringing -- as opposed to true hearing loss. Some locations, like bars and restaurants with lots of concrete and hard surfaces, sound like everything is at the same volume. The person across from me and the person talking to their friend ten feet away all seem to be at the same volume. It gets overwhelming at times but you learn to deal with it.
Memory Loss. This is one of the more well-known side effects of chemo. Sometimes called "chemo brain" or "chemo fog," you'll find it hard to remember things. You won't forget your name or who you're married to, but short term memory and small things -- like what you talked about when you saw your friend last week or the status of a project from months ago -- may be underwater or gone altogether. Again, you'll have to learn to adapt. Listen closely, repeat things and make notes.
Nausea is probably the thing people most associate with chemo. I never felt truly sick to my stomach and I never threw up from chemo. But man, oh man did I feel bloated. It was as if I'd stuffed myself at three seperate Thanksgiving meals. It was this horrific feeling that I'd burst at any second. It came and went, but the weekends right after treatment toward the end of my run were the worst. I didn't have the energy to move around much, so all I could do was ride it out. Sparkling water helped to some extent, as did tea with a little raw ginger in it.
Fatigue is another one. You won't sleep all the time but you'll sure feel worn out. Try to do something every day, though. Even if it's no more than getting the mail. The more active you are, the sooner all that crap can get worked through your system.
Change in sense of smell. This was one of the cooler side effects, if there is such a thing. One day I was walking the dogs and a car drove by with the window down. I could smell the guy's cologne with such clarity, it was unreal. I had an almost superhuman sense of smell. It didn't inspire me to go solve crimes or anything, but it was kind of fun. Of course there's a flipside. For a little while I couldn't smell much of anything. It slowly equalized.
Saturday, August 20, 2011
My Favorite Things
While music was definitely important, there were a handful of other small comforts that went a long way in helping me get through treatment. If you know someone going through chemo there are plenty of absolutely awesome and very affordable small pleasures you can offer that go a long, long way.
Here's a list in no particular order.
* Gum. Chemo can leave a nasty taste in your mouth that tastes like the Tin Man's underwear after a week of landscaping in New Orleans during the middle of August. There's this weird, inescapable metallic contingent that's hard to avoid. Gum can really, really make a difference. I'm not kidding.
* Sparkling water. It doesn't really matter what brand you buy, whether it's a well-known global brand or a store knock-off. Carbonated water really helps settle the stomach (ginger ale's a good go-to if you can't find it) and it's a low-calorie option that can help with bloating. At least it did for me.
* Popsicles. I will happily and eagerly shill for Edy's Fruit Bars (though I stick to the non-Splenda versions). There's something about their cooling ability and the feeling that you're getting at least little nutrition from the fruit. Chemo patients often have hot flashes and even fevers, and a water-based option like popsicles or fruit bars really help cool you off. Smoothies are another great choice.
* Netflix. I went on an epic movie-fest when it looked like I might go blind, but a gift subscription to Netflix is a terrific gift. They don't have to leave their house and can manage their queue from all over the place, and can watch whatever, whenever they want.
* Goals. Victories are small when you're in the middle of chemo or radiation treatment. You're exhausted, uncomfortable and feel like shit. Set small goals and try to meet them. It can be as small as getting out of bed and sitting in a chair for twenty minutes, or as big as taking a walk in the park. Make sure they're realistic, but also make sure you hit them.
* Friends and relatives. This is really the most important one of all. You need to have a support system, but be flexible. People you think you can count on will fail you, while folks you never expected will be absolutely awesome. Accept the positive and ignore the negative. There are a million reasons why people distance themselves, but they don't have anything to do with you. That's shit they have to deal with. It's not your problem and it's not you. Be open to meeting new people. You'll be suprised at the connections you form with old and new friends.
* Perspective. Even though it feels like it, this is not forever. Yes, the days are long, but treatment will end. And chances are that you'll still feel like complete shit when it's over. It takes a lot more time than it should to get better. But remember, you've had extremely toxic chemicals pumped into your system. You might have had colossal doses of radiation as well, but with none of the awesome superhero side effects. But the majority of the side effects will slowly fade. Really.
Here's a list in no particular order.
* Gum. Chemo can leave a nasty taste in your mouth that tastes like the Tin Man's underwear after a week of landscaping in New Orleans during the middle of August. There's this weird, inescapable metallic contingent that's hard to avoid. Gum can really, really make a difference. I'm not kidding.
* Sparkling water. It doesn't really matter what brand you buy, whether it's a well-known global brand or a store knock-off. Carbonated water really helps settle the stomach (ginger ale's a good go-to if you can't find it) and it's a low-calorie option that can help with bloating. At least it did for me.
* Popsicles. I will happily and eagerly shill for Edy's Fruit Bars (though I stick to the non-Splenda versions). There's something about their cooling ability and the feeling that you're getting at least little nutrition from the fruit. Chemo patients often have hot flashes and even fevers, and a water-based option like popsicles or fruit bars really help cool you off. Smoothies are another great choice.
* Netflix. I went on an epic movie-fest when it looked like I might go blind, but a gift subscription to Netflix is a terrific gift. They don't have to leave their house and can manage their queue from all over the place, and can watch whatever, whenever they want.
* Goals. Victories are small when you're in the middle of chemo or radiation treatment. You're exhausted, uncomfortable and feel like shit. Set small goals and try to meet them. It can be as small as getting out of bed and sitting in a chair for twenty minutes, or as big as taking a walk in the park. Make sure they're realistic, but also make sure you hit them.
* Friends and relatives. This is really the most important one of all. You need to have a support system, but be flexible. People you think you can count on will fail you, while folks you never expected will be absolutely awesome. Accept the positive and ignore the negative. There are a million reasons why people distance themselves, but they don't have anything to do with you. That's shit they have to deal with. It's not your problem and it's not you. Be open to meeting new people. You'll be suprised at the connections you form with old and new friends.
* Perspective. Even though it feels like it, this is not forever. Yes, the days are long, but treatment will end. And chances are that you'll still feel like complete shit when it's over. It takes a lot more time than it should to get better. But remember, you've had extremely toxic chemicals pumped into your system. You might have had colossal doses of radiation as well, but with none of the awesome superhero side effects. But the majority of the side effects will slowly fade. Really.
Tuesday, July 19, 2011
The Role of Music
Once I got past the Dave Matthews hurdle, things went much more smoothly. I ended up making two CDs worth of songs I took to radiation therapy and alternated between the two. "Hold My Hand" by UNKLE was an unintentional but fitting way to kick off my radiation therapy, and it was the first song on the second disc I burned. The opening bars were an uncanny compliment to the hum of the radiation machine as it started its sequence and seemed a fitting way to kick off fifteen minutes of absolute stillness. It gave me something to focus on.
You'd think that sappy stuff from the Beaches soundtrack or inspirational songs like "I Believe I Can Fly" would seem like the things you'd want to hear, but not for me. I was more interested in songs that would keep me calm and distract me.
I also didn't want to put all my favorite songs on a disc, at least at first. I didn't want to have my favorite bands or songs tied to a pretty shitty period in my life. I broke that rule on my last days of chemo, though. Up until that point I'd never brought my iPod into the chemo area. I'd listen to music on the way up to the hospital, but not while I was tied to an IV.
But at the end I was feeling really, really shitty. The chemo had caught up with me by the tail end of it, and rather than getting my meds in a recliner, I was relegated to a hospital bed. The last couple days were the worst. I couldn't read, couldn't watch TV, nothing. The bloating and nausea were really getting bad. I couldn't get comfortable, and I had a high fever that came and went. I had little to no energy and my white cell count was dangerously low.
So, fuck it. I loaded my iPod up with two things: a Tom Waits show and the fresh-off-the-presses All Systems Go 3 from Rocket from the Crypt. Waits was touring the summer of my treatment, a real rarity, but I couldn't go. NPR had broadcast an entire show from that tour (!) and I'd downloaded it. A good friend of mine was actually at that concert, and had asked me to go. Waits played one of my absolute favorites in that set -- "On the Nickel." His storytelling and imaginative songs were a wonderful escape, and it took my mind off the chemo for a while. If I couldn't be there in person this was the next best thing. (You can download that Tom Waits show here).
As for Rocket, well, they were my favorite band for a lot of reasons probably best reserved for another entry. They'd broken up by this point, but still had a lot of unreleased material. The All Systems Go series collected all their odds and ends -- singles, alternate versions and so on. ASG3 had all that and more. Among the singles I'd heard here and there was what amounted to an entire album worth of songs I'd never heard. What a gift that was. I figured that the unconditional love of Rocket from the Crypt would be good juju in my fight against cancer, a rally toward the end of chemo. While I don't have the stats, test results or scientific proof that songs like "Tiger Mask" or "Total Bummer" kill cancer cells, I can't exactly disprove it either.
You'd think that sappy stuff from the Beaches soundtrack or inspirational songs like "I Believe I Can Fly" would seem like the things you'd want to hear, but not for me. I was more interested in songs that would keep me calm and distract me.
I also didn't want to put all my favorite songs on a disc, at least at first. I didn't want to have my favorite bands or songs tied to a pretty shitty period in my life. I broke that rule on my last days of chemo, though. Up until that point I'd never brought my iPod into the chemo area. I'd listen to music on the way up to the hospital, but not while I was tied to an IV.
But at the end I was feeling really, really shitty. The chemo had caught up with me by the tail end of it, and rather than getting my meds in a recliner, I was relegated to a hospital bed. The last couple days were the worst. I couldn't read, couldn't watch TV, nothing. The bloating and nausea were really getting bad. I couldn't get comfortable, and I had a high fever that came and went. I had little to no energy and my white cell count was dangerously low.
So, fuck it. I loaded my iPod up with two things: a Tom Waits show and the fresh-off-the-presses All Systems Go 3 from Rocket from the Crypt. Waits was touring the summer of my treatment, a real rarity, but I couldn't go. NPR had broadcast an entire show from that tour (!) and I'd downloaded it. A good friend of mine was actually at that concert, and had asked me to go. Waits played one of my absolute favorites in that set -- "On the Nickel." His storytelling and imaginative songs were a wonderful escape, and it took my mind off the chemo for a while. If I couldn't be there in person this was the next best thing. (You can download that Tom Waits show here).
As for Rocket, well, they were my favorite band for a lot of reasons probably best reserved for another entry. They'd broken up by this point, but still had a lot of unreleased material. The All Systems Go series collected all their odds and ends -- singles, alternate versions and so on. ASG3 had all that and more. Among the singles I'd heard here and there was what amounted to an entire album worth of songs I'd never heard. What a gift that was. I figured that the unconditional love of Rocket from the Crypt would be good juju in my fight against cancer, a rally toward the end of chemo. While I don't have the stats, test results or scientific proof that songs like "Tiger Mask" or "Total Bummer" kill cancer cells, I can't exactly disprove it either.
Friday, June 24, 2011
Dave Matthews Can Go Fuck Himself
I was a little nervous on my first day of radiation treatment. I'd tried to find some answers on the Internet so I'd have a sense of what to expect but like chemo, the answers varied wildly. I had the ultimate trust in my doctor, but I was still a little anxious. I'd be doing this for a while. Would I get sick like some people? Would I get headaches? Would I be exhausted?
They ushered me into the room I'd be visiting every day for the next couple months. It was a dimly-lit room with a large machine in the center. It had a raised platform I'd be laying on, and a huge arm with a camera-looking thing at the end that reminded me a little of the X-ray machine at the dentist's office.
Here's how it would work: I'd lay down on the platform and they'd affix the mask by literally screwing it down to the table. That'd ensure that the right area would get treatment every time. I'd lay there incredibly still for the 10-15 minutes it'd take for the scanner to do its thing and that would be it.
Sounded easy enough. I got on the table and got comfortable. They screwed the mask to the table and told me not to move. Fine. Then, the nurse asked me if I wanted to listen to any music. I can take just about anything for a short period of time with the exception of Indian. "How's Dave Matthews?"
"Fine," I said. At that point I was still nervous and just wanted to get it over with.
I've never been all that fond of Dave Matthews. There's the country fiddle hoedown violin thing, the hippie/frat boy fans, but most of all, it's that yodeling yelp of his that sends shivers down my spine. It's what they play when you call Hell and you're put on hold. I'm sure the guy's totally cool and would be fun to hang out and drink a beer with, but that yodel. That yodel.
So the music starts and Dave's yodeling away. "Ants Marching." Here come the violins. I'm laying there patiently waiting for the treatment to start. It isn't. Meanwhile, Dave's fiddle player is really throwing his back into it and givin' her hell. Still no activity from the radiation arm.
After about four songs I see someone approach me from the corner of my eye. "We're having some problems with the machine," she says in a soothing voice as Dave brings it on home. "Are you comfortable? We'll start in just a minute." Then she leaves.
That's when it hits me: I am literally strapped to a table and being forced to listen to Dave Matthews and there's not a goddamn thing I can do about it.
Eventually the machine gets going. I don't feel a thing as it whines and whirs around me, clicking and clacking. It helps take my mind off the yodeling that launched a thousand hacky sacks plays in the background.
Finally, it's over. I'm released from my cage and I sit up. The first thing I ask is if I can bring my own CD next time.
"Sure!"
They ushered me into the room I'd be visiting every day for the next couple months. It was a dimly-lit room with a large machine in the center. It had a raised platform I'd be laying on, and a huge arm with a camera-looking thing at the end that reminded me a little of the X-ray machine at the dentist's office.
Here's how it would work: I'd lay down on the platform and they'd affix the mask by literally screwing it down to the table. That'd ensure that the right area would get treatment every time. I'd lay there incredibly still for the 10-15 minutes it'd take for the scanner to do its thing and that would be it.
Sounded easy enough. I got on the table and got comfortable. They screwed the mask to the table and told me not to move. Fine. Then, the nurse asked me if I wanted to listen to any music. I can take just about anything for a short period of time with the exception of Indian. "How's Dave Matthews?"
"Fine," I said. At that point I was still nervous and just wanted to get it over with.
I've never been all that fond of Dave Matthews. There's the country fiddle hoedown violin thing, the hippie/frat boy fans, but most of all, it's that yodeling yelp of his that sends shivers down my spine. It's what they play when you call Hell and you're put on hold. I'm sure the guy's totally cool and would be fun to hang out and drink a beer with, but that yodel. That yodel.
So the music starts and Dave's yodeling away. "Ants Marching." Here come the violins. I'm laying there patiently waiting for the treatment to start. It isn't. Meanwhile, Dave's fiddle player is really throwing his back into it and givin' her hell. Still no activity from the radiation arm.
After about four songs I see someone approach me from the corner of my eye. "We're having some problems with the machine," she says in a soothing voice as Dave brings it on home. "Are you comfortable? We'll start in just a minute." Then she leaves.
That's when it hits me: I am literally strapped to a table and being forced to listen to Dave Matthews and there's not a goddamn thing I can do about it.
Eventually the machine gets going. I don't feel a thing as it whines and whirs around me, clicking and clacking. It helps take my mind off the yodeling that launched a thousand hacky sacks plays in the background.
Finally, it's over. I'm released from my cage and I sit up. The first thing I ask is if I can bring my own CD next time.
"Sure!"
Monday, June 13, 2011
The Mask
While the chemo continued to course through me, it was time to prepare for round 2: radiation. The thoughts on my radiation treatment had evolved as the summer progressed. At first, the doctor was leaning toward one massive dose. But the more he read and learned about pineal tumors, it seemed as if a lower dose on a more consistent basis would be the best course of treatment. I'd go three days a week for thirty minutes for roughly 9 weeks.
The first step was to get me fitted for a mask. The purpose of the mask was to make sure my head was held in precise place during the treatments. Though the radiation can be programmed with precision -- they could trim the eyelashes on a gnat -- it was crucial that my head stay in a stable position while I was getting zapped or else I'd wind up shitting my pants whenever I heard a doorbell. Being a fan of Halloween, I agreed.
So, the mask. I laid on a table similar to the ones I laid on for an MRI. The attendant told me to get comfortable. "In a few minutes, another nurse will come out with the mask, which will be form-fitted to your face," she said. "I just want you to know that the mask will be extremely hot." I gave her a look. "It won't burn you, but the plastic is very hot."
She went on a bit, throwing in another couple "very hots" in there for good measure. Then, out of the corner of my eye, I saw someone emerge from a side door with what looked like a droopy white towel. They were walking towards me, and fast.
"Okay, here's the mask," she said. "And remember, it's hot."
I know. I know it's fucking hot. You told me ten times, lady.
The attendant was about a foot away.
I grimaced a little, expecting to feel roaring hot plastic coating my face.
"Okay, here we go. Stay still."
Ohshitohshitohshitohshit.
It felt like a warm towel.
I was glad it didn't burn me, but in a way I felt cheated. I mean, here I was, expecting to get burned and it was nothing. I probably looked like Han Solo, mouth open and encased in Carbonite. How many masks looked like that, I wondered.
The first step was to get me fitted for a mask. The purpose of the mask was to make sure my head was held in precise place during the treatments. Though the radiation can be programmed with precision -- they could trim the eyelashes on a gnat -- it was crucial that my head stay in a stable position while I was getting zapped or else I'd wind up shitting my pants whenever I heard a doorbell. Being a fan of Halloween, I agreed.
So, the mask. I laid on a table similar to the ones I laid on for an MRI. The attendant told me to get comfortable. "In a few minutes, another nurse will come out with the mask, which will be form-fitted to your face," she said. "I just want you to know that the mask will be extremely hot." I gave her a look. "It won't burn you, but the plastic is very hot."
She went on a bit, throwing in another couple "very hots" in there for good measure. Then, out of the corner of my eye, I saw someone emerge from a side door with what looked like a droopy white towel. They were walking towards me, and fast.
"Okay, here's the mask," she said. "And remember, it's hot."
I know. I know it's fucking hot. You told me ten times, lady.
The attendant was about a foot away.
I grimaced a little, expecting to feel roaring hot plastic coating my face.
"Okay, here we go. Stay still."
Ohshitohshitohshitohshit.
It felt like a warm towel.
I was glad it didn't burn me, but in a way I felt cheated. I mean, here I was, expecting to get burned and it was nothing. I probably looked like Han Solo, mouth open and encased in Carbonite. How many masks looked like that, I wondered.
Tuesday, June 7, 2011
Drain the Blood
Every time I'd go in for chemo they'd do a blood draw. I'm not a big fan of needles, but I did okay. What began to scare me were the results. More specifically, my white blood cell count.
As the treatment went on, my white count got lower and lower. That's a problem, because white blood cells fight infection and disease. The lower my count got, the more important it was that I avoid infection and exposure to people who were sick. Luckily, I was undergoing chemo in late summer, so there weren't too many bugs floating around. No rampant flu outbreaks or anything like that. But I still had to wear a mask over my face when I drove home after treatment.
It came to a head in early September. I was at the tail end of chemo, but by then my white cell count was the lowest it had been, and I needed to get the doctor's okay in order to go see the Night Marchers - a band I really liked - in a couple weeks.
With cancer, your goals are often very minor ones. Being able to walk to the end of the driveway to pick up the trash cans on trash day. Taking the dogs to the end of the block, then eventually two blocks when I took them for a walk. All were small victories in the battle.
But the Night Marchers show in the fall was a huge one for me. The band's lead guitarist and singer is John Reis, who has been in multiple awesome bands that have been mathematically and ergonomically proven to be awesome by all sorts of experts. I'd been a fan of his bands for years, and when the Night Marchers -- his latest band -- came to town on their first tour, it was A Big Deal.
Unfortunately, that date coincided with my diagnosis of the brain tumor. So there was that. Still, the show was incredible and I had no worries, thoughts or concerns about the future at that point. It was a very uplifting and positive experience.
Now they were coming back. Even though I still had radiation treatment ahead of me, it was a fitting bookend to the whole cancer experience. But there was the white count to contend with.
As the treatment went on, my white count got lower and lower. That's a problem, because white blood cells fight infection and disease. The lower my count got, the more important it was that I avoid infection and exposure to people who were sick. Luckily, I was undergoing chemo in late summer, so there weren't too many bugs floating around. No rampant flu outbreaks or anything like that. But I still had to wear a mask over my face when I drove home after treatment.
It came to a head in early September. I was at the tail end of chemo, but by then my white cell count was the lowest it had been, and I needed to get the doctor's okay in order to go see the Night Marchers - a band I really liked - in a couple weeks.
With cancer, your goals are often very minor ones. Being able to walk to the end of the driveway to pick up the trash cans on trash day. Taking the dogs to the end of the block, then eventually two blocks when I took them for a walk. All were small victories in the battle.
But the Night Marchers show in the fall was a huge one for me. The band's lead guitarist and singer is John Reis, who has been in multiple awesome bands that have been mathematically and ergonomically proven to be awesome by all sorts of experts. I'd been a fan of his bands for years, and when the Night Marchers -- his latest band -- came to town on their first tour, it was A Big Deal.
Unfortunately, that date coincided with my diagnosis of the brain tumor. So there was that. Still, the show was incredible and I had no worries, thoughts or concerns about the future at that point. It was a very uplifting and positive experience.
Now they were coming back. Even though I still had radiation treatment ahead of me, it was a fitting bookend to the whole cancer experience. But there was the white count to contend with.
Wednesday, May 11, 2011
Me and My Friends
I finally got one in 2005. Bosco. Though his photo on the rescue web site pointed to trouble, we drove the two hours it took to get to the shelter to meet him. Everyone there was surprised we wanted to meet Bosco. "Really?" they asked. "Bosco?"
We bonded immediately.
A short while later we got Alan, a terrier of some kind, from the same shelter. Though it's taken years, they're starting to get to be better friends.
They say dogs can smell cancer. I don't know if that's true, but Bosco could definitely tell I was sick, and he knew I was getting chemo. I'm sure my scent changed. Regardless, he was stuck to me like glue. If I was watching a movie on the couch, he was on my lap. If I was in bed, he was laying on the floor beside me. And no matter how far I could walk, he and Alan were always up for a trip outside, whether it was to the end of the street or around the block.
I do not doubt they played a key role in my recovery. Though you can't measure it, the support, love and friendship you get from dogs (sorry cat people) cannot be measured or overemphasized. There's a cameraderie there that can't truly be replicated. As any dog owner can tell you, there's an unspoken connection with them that is unlike anything else.
Thursday, May 5, 2011
The Wolfman
Once the chemo got rolling, I quickly came to loathe the weekends. The side effects would start to peak on Saturday morning, and by that afternoon I'd be miserable. Fever, intense stomach aches, nausea, the whole bit. Depending on what they gave me, it would taper off until the middle of the week. Even then it wasn't ideal. I'd just start to feel somewhat normal again and then it'd be time for another dose. Time to ride the wave.
I did my best to keep the stuff moving. Lots of water, juice, smoothies and popsicles to stay hydrated. I didn't have much energy, but when I did I'd take the dogs for a walk. Sometimes I wouldn't make it any further than the end of our block before I'd have to turn back. Sometimes I'd be able to go around the block.
It was during one of these walks that I noticed another strange side effect of chemo: I had developed a superhuman sense of smell. I first noticed it when a car drove by with the windows down. The car was probably going about twenty miles an hour, yet I could clearly smell the guy's cologne. It wasn't overwhelming or anything, but if I'd had an encyclopedic knowledge of men's colognes I know I could've identified it immediately.
My curiousity piqued, I tried to pay more attention to what I could suddenly smell: fresh cut grass that had been mowed days earlier. Food cooking. Old leaves. The coffee someone was brewing. And on and on. Yeah, unpleasant smells were also amplified, but other, more subtle ones I'd never noticed were as well.
Turns out this is a fairly common side effect of chemo. Other senses like taste and hearing would also be affected, though in much less awesome ways.
I did my best to keep the stuff moving. Lots of water, juice, smoothies and popsicles to stay hydrated. I didn't have much energy, but when I did I'd take the dogs for a walk. Sometimes I wouldn't make it any further than the end of our block before I'd have to turn back. Sometimes I'd be able to go around the block.
It was during one of these walks that I noticed another strange side effect of chemo: I had developed a superhuman sense of smell. I first noticed it when a car drove by with the windows down. The car was probably going about twenty miles an hour, yet I could clearly smell the guy's cologne. It wasn't overwhelming or anything, but if I'd had an encyclopedic knowledge of men's colognes I know I could've identified it immediately.
My curiousity piqued, I tried to pay more attention to what I could suddenly smell: fresh cut grass that had been mowed days earlier. Food cooking. Old leaves. The coffee someone was brewing. And on and on. Yeah, unpleasant smells were also amplified, but other, more subtle ones I'd never noticed were as well.
Turns out this is a fairly common side effect of chemo. Other senses like taste and hearing would also be affected, though in much less awesome ways.
Thursday, April 28, 2011
Quest for Fiber
Between the steroids, painkillers and God knows what else, cancer treatment can, for lack of a better phrase, issue a cease and desist that cannot be overruled. Despite all the Lifetime Movies of the Week that offer a melodramatic take on cancer, you never see a cancer patient emerge triumphant from the bathroom with a wide smile on their face, haoled by beams of sunlight as harps and the chorus of a thousand angels herald a successful BM.
But there is hope. After a few weeks of torture, one becomes intimately familiar with fiber in all its forms. There's the Metamucil approach, in which you simply drink a glass of odd-tasting water. There's the uptake in vegetable consumption. There's exercise. There's laxatives. There are fiber-rich foods. You can eat as much fiber as you and all your respective bystanders can handle.
And then there's Fiber One.
I don't know who came up with the concept of Fiber One, but it's a good one: pack as much fiber as you can into whatever cereal-based carrier you can find, coat it in chocolate and call it good. It's not bad. It works for a while. For a brief, shining moment, I almost considered applying for a job as spokesman.
But it offers diminishing returns. After the honeymoon period, I was on the hunt for something more reliable, something that didn't require the rental of a power washer after the proverbial smoke had cleared.
That search ended after a short conversation with a nurse. Her recommendation: Senokot.
That might not seem like a blog-worthy post, but believe me, it is. This was just one of the many small but crucial details that never make it into all those magazines in the waiting room or the vague pamphlets they give you.
But there is hope. After a few weeks of torture, one becomes intimately familiar with fiber in all its forms. There's the Metamucil approach, in which you simply drink a glass of odd-tasting water. There's the uptake in vegetable consumption. There's exercise. There's laxatives. There are fiber-rich foods. You can eat as much fiber as you and all your respective bystanders can handle.
And then there's Fiber One.
I don't know who came up with the concept of Fiber One, but it's a good one: pack as much fiber as you can into whatever cereal-based carrier you can find, coat it in chocolate and call it good. It's not bad. It works for a while. For a brief, shining moment, I almost considered applying for a job as spokesman.
But it offers diminishing returns. After the honeymoon period, I was on the hunt for something more reliable, something that didn't require the rental of a power washer after the proverbial smoke had cleared.
That search ended after a short conversation with a nurse. Her recommendation: Senokot.
That might not seem like a blog-worthy post, but believe me, it is. This was just one of the many small but crucial details that never make it into all those magazines in the waiting room or the vague pamphlets they give you.
Tuesday, April 19, 2011
Water, Water Everywhere...
After a few weeks of chemo, Smokey Joe was the last of my worries. I usually felt okay immediately after treatment, which was Monday through Wednesday, from 10am or so until 3 or 4. I'd feel a little tired, but not that bad in the grand scheme of things.
By Friday the side effects would start to kick in. Often it'd be mild discomfort in my stomach and a low grade fever. By Saturday I'd often feel bloated like I'd never felt before. Imagine that "full" feeling you get after stuffing yourself at Thanksgiving, but three times worse. I couldn't burp, fart or go to the bathroom to relieve the pressure. Just roll around in bed and wait for it to subside.
They'd told me to drink as much fluids, particularly water, as I could in order to help speed the chemo through my body. It was around this time that I discovered the most wonderful item sold in grocery stores: carbonated water. Words cannot describe how symphonic that first sip of sparkling water truly was. Canada Dry, you are forever in my heart. The carbonation worked wonders for the nausea and bloating, helping deflate me while the water did its thing.
There were two other elements I could not (and now cannot) live without: the constant availability of gum and Edy's Fruit Bars.
Chemo leaves an awful metallic taste in your mouth, and sugarfree gum -- I opt for Extra and would happily endorse it -- works wonders to mask it. Though the chemo taste never really leaves, some minty gum goes a long way toward minimizing that chalky, alkaline chemical flavor and taking your mind off it, even if it's only temporary.
As for the Edy's fruit bars, they're less sugary sweet than popsicles and have at least some nutritional value. There's something soothing and comforting about a popsicle, and the cool, somewhat gritty texture of the bars (they use real fruit in them, so some of the texture of strawberries, for example, is retained) helped to keep me hydrated and offered a slightly healthier option than a traditional popsicle.
These may seem like minor things, but when you're feeling like you've been beat up, pumped full of air and have a raging fever, a bottle of carbonated water and a popsicle are worth their weight in gold.
By Friday the side effects would start to kick in. Often it'd be mild discomfort in my stomach and a low grade fever. By Saturday I'd often feel bloated like I'd never felt before. Imagine that "full" feeling you get after stuffing yourself at Thanksgiving, but three times worse. I couldn't burp, fart or go to the bathroom to relieve the pressure. Just roll around in bed and wait for it to subside.
They'd told me to drink as much fluids, particularly water, as I could in order to help speed the chemo through my body. It was around this time that I discovered the most wonderful item sold in grocery stores: carbonated water. Words cannot describe how symphonic that first sip of sparkling water truly was. Canada Dry, you are forever in my heart. The carbonation worked wonders for the nausea and bloating, helping deflate me while the water did its thing.
There were two other elements I could not (and now cannot) live without: the constant availability of gum and Edy's Fruit Bars.
Chemo leaves an awful metallic taste in your mouth, and sugarfree gum -- I opt for Extra and would happily endorse it -- works wonders to mask it. Though the chemo taste never really leaves, some minty gum goes a long way toward minimizing that chalky, alkaline chemical flavor and taking your mind off it, even if it's only temporary.
As for the Edy's fruit bars, they're less sugary sweet than popsicles and have at least some nutritional value. There's something soothing and comforting about a popsicle, and the cool, somewhat gritty texture of the bars (they use real fruit in them, so some of the texture of strawberries, for example, is retained) helped to keep me hydrated and offered a slightly healthier option than a traditional popsicle.
These may seem like minor things, but when you're feeling like you've been beat up, pumped full of air and have a raging fever, a bottle of carbonated water and a popsicle are worth their weight in gold.
Tuesday, April 5, 2011
Whine, Cry, Bitch, Moan and Complain
One day, Smokey Joe added a new topic to his repertoire. Entitled "Everything Sucks," he'd go on and on, bitching and complaining about the nurses, the chairs, the weather, and the general state of things. I didn't say anything for a while, hoping he'd get the hint and shut the hell up. Of course he didn't.
He'd just found out that he had an estimated six months to live. That sucked. That was unfair. And so on.
I usually start my days by watching the morning news. On this particular morning, there was a story about a young father of two that was working on some electical lines that fell to his death. It was terrible -- he'd just started the job, and now his two kids would grow up without a dad.
I told Smokey Joe about this. He didn't really have a reaction other than 'what's your point?'
"The point," I began, "is that this guy didn't have a chance to take his kids to the zoo one last time, to go fishing with his buddy, to kiss his wife one last time or settle his affairs. He didn't have a chance to tell people how much they meant to him."
"You, however, do. You have at least six months to get the gang together for one last poker night. To call your kid and tell him how proud you are of him. To watch the Three Stooges. To eat nothing but Doritos all day. You have time. This guy didn't. You can spend those six months pissing and moaning about how unfair everything is or you can make the most of it."
I wanted to add that I could probably speak for the rest of the room by saying that it'd be great if he'd start now by shutting the hell up, but I didn't. I don't know if he was stunned, hurt or shocked that I'd spoken more than two words to him. But he shut up.
Wednesday, March 30, 2011
The Ballad of Smokey Joe
I was getting lulled into a false sense of security with the chemo. It'd been a couple weeks and I had two weeks of treatment under my belt and so far, not a whole lot in terms of side effects. I still had my hair (trimmed, though, so it'd sort of match the divot left from the biopsy) and my appetite was fairly normal. I did notice a bit of a decline in terms of energy level, but that wasn't too big of a deal.
I didn't really even mind the treatments, and I never did grow to dread them. The nurses were great and it was a pretty peaceful afternoon in the chair.
Except for Smokey Joe.
I don't know the guy's real name but that's what I called him. He reeked of cigarettes and talked a mile a minute. Most days he was accompanied by a short, plump, Midwestern-y woman who may or may not have had developmental disabilities. She rarely said anything. Her role was as a sort of Greek chorus for Smokey Joe, who would go on long-winded, circular rants about "our good gov'ment," the best route to get somewhere, and fishing. All at top volume. She would chuckle and laugh that wheezy, Smedley-like laugh. To her, he was the most entertaining raconteur in the world.
And for some reason he always wanted to sit by me. I tried switching chairs -- I'd get there first -- but none of it mattered. He'd come in, see me, say "back again!" and we were off. I did my best not to encourage him by making it a point to keep my head buried in my books. It worked for the most part.
Turns out Smokey Joe was a repeat customer. He was in for his third tour of treatment for lung cancer. Once, the nurse scolded him for continuing to smoke as she was hooking him up to his IV.
"I know, I know," he said. "I did pretty good last night, but I took off that patch so I could have just one and I ended up having eight!" For some reason he seemed proud of this, as he said it in an "aw shucks, ain't I a stinker!" kind of way.
But that was his way of whistling in the dark. Later, after the nurse left, the Silent Chuckler said something about the Night of Eight Cigarettes. He mentioned that he hadn't been able to eat much for the past few days. Everything came back up.
But the cigarettes worked just fine.
I didn't really even mind the treatments, and I never did grow to dread them. The nurses were great and it was a pretty peaceful afternoon in the chair.
Except for Smokey Joe.
I don't know the guy's real name but that's what I called him. He reeked of cigarettes and talked a mile a minute. Most days he was accompanied by a short, plump, Midwestern-y woman who may or may not have had developmental disabilities. She rarely said anything. Her role was as a sort of Greek chorus for Smokey Joe, who would go on long-winded, circular rants about "our good gov'ment," the best route to get somewhere, and fishing. All at top volume. She would chuckle and laugh that wheezy, Smedley-like laugh. To her, he was the most entertaining raconteur in the world.
And for some reason he always wanted to sit by me. I tried switching chairs -- I'd get there first -- but none of it mattered. He'd come in, see me, say "back again!" and we were off. I did my best not to encourage him by making it a point to keep my head buried in my books. It worked for the most part.
Turns out Smokey Joe was a repeat customer. He was in for his third tour of treatment for lung cancer. Once, the nurse scolded him for continuing to smoke as she was hooking him up to his IV.
"I know, I know," he said. "I did pretty good last night, but I took off that patch so I could have just one and I ended up having eight!" For some reason he seemed proud of this, as he said it in an "aw shucks, ain't I a stinker!" kind of way.
But that was his way of whistling in the dark. Later, after the nurse left, the Silent Chuckler said something about the Night of Eight Cigarettes. He mentioned that he hadn't been able to eat much for the past few days. Everything came back up.
But the cigarettes worked just fine.
Friday, March 25, 2011
Needles and Pins
The first time you get chemo's like a staring contest between you and the IV. Who will win? That bag full of clear fluid seems intimidating. Drip. Drip. Drip.
Turns out you don't feel much of anything during the treatment itself. At least I didn't at first. The only issue I had was the overwhelming need to pee. First you get a bag of anti-nausea medicine. Then they bring out the liter bags of whatever chemo drug(s) you're going to get. Chemo's some nasty shit, so after those are done, they flush your system with a liter of saline to help speed the chemo along and out of your system. That's a lot of fluids and a lot of trips to the bathroom, all made a little more difficult with an IV stand attached to your hand.
But other than that it wasn't a big deal. I was expecting nausea, vomiting, all sorts of bad stuff and it didn't happen. It was just me, the recliner and the IV. Most of the time I brought books to read that I had to review, and I tore through many. A lot of them were either cookbooks or about food in some way, making for a strange combination at times. I was even able to eat lunch while I was there most days.
I was one of the youngest patients there. It was primarily me and an ever-changing cast of older people for the most part. Occasionally there would be a younger woman in her late 30s, early 40s, but most people were elderly. And nobody had longer treatments than I did, it seemed. Though I wasn't the first one in, I was often one of the last ones to leave.
And so is the chemo. You'd think the side effects would be immediate, since it's going straight into your bloodstream, but no. Oh no. It waits a few days.
Turns out you don't feel much of anything during the treatment itself. At least I didn't at first. The only issue I had was the overwhelming need to pee. First you get a bag of anti-nausea medicine. Then they bring out the liter bags of whatever chemo drug(s) you're going to get. Chemo's some nasty shit, so after those are done, they flush your system with a liter of saline to help speed the chemo along and out of your system. That's a lot of fluids and a lot of trips to the bathroom, all made a little more difficult with an IV stand attached to your hand.
But other than that it wasn't a big deal. I was expecting nausea, vomiting, all sorts of bad stuff and it didn't happen. It was just me, the recliner and the IV. Most of the time I brought books to read that I had to review, and I tore through many. A lot of them were either cookbooks or about food in some way, making for a strange combination at times. I was even able to eat lunch while I was there most days.
I was one of the youngest patients there. It was primarily me and an ever-changing cast of older people for the most part. Occasionally there would be a younger woman in her late 30s, early 40s, but most people were elderly. And nobody had longer treatments than I did, it seemed. Though I wasn't the first one in, I was often one of the last ones to leave.
And so is the chemo. You'd think the side effects would be immediate, since it's going straight into your bloodstream, but no. Oh no. It waits a few days.
Thursday, March 10, 2011
Party: Started.
The new team was a complete 180 from Witch Industries. The doctor sat me down and went over the course of treatment. Instead of three six-hour days every week for six weeks, which the Wicked Witch prescribed, I'd have three solid days of chemo and then 2-3 weeks off. The sessions would probably last a little longer, but I'd have time to recuperate inbetween sessions. With that, we were off.
I felt like a kid on his first day of school. A whole new environment, new people and a room I'd be spending a lot of time in for the next few months. The room was about half full of old people, all tethered to IVs. I was easily the youngest one there. It was a little anticlimatic -- nobody was running for the bathroom or writhing in agony. They just sat there, working on crossword puzzles, talking to their neighbors, watching TV or reading.
The nurses welcomed me and helped me get comfortable in the pleather recliner. First I'd get a bag full of some anti-nausea medicine. Then the chemo, then a bag of saline to help flush the chemo out of my system. We were off to the races.
I felt like a kid on his first day of school. A whole new environment, new people and a room I'd be spending a lot of time in for the next few months. The room was about half full of old people, all tethered to IVs. I was easily the youngest one there. It was a little anticlimatic -- nobody was running for the bathroom or writhing in agony. They just sat there, working on crossword puzzles, talking to their neighbors, watching TV or reading.
The nurses welcomed me and helped me get comfortable in the pleather recliner. First I'd get a bag full of some anti-nausea medicine. Then the chemo, then a bag of saline to help flush the chemo out of my system. We were off to the races.
Tuesday, March 8, 2011
Any Port in a Storm?
The day I was supposed to get my port coincided with an update from my neurologist, whose office was across the street from the hospital. After we saw him, my wife and I began the walk across the street.
There are a handful of days that stand out like movie scenes in this whole ordeal, and this is one of them. It was a bright, sunny summer day. Clear skies. Not too hot, not too humid. A great day to be out for a walk. I remember the wind in my wife's hair as we walked toward the hospital. I turned to her and said "I don't know about this," and we started to talk about the port, which was really more symbolic of our faith in the Wicked Witch than anything else. Neither of us felt good about her. We stopped right on the sidewalk.
I don't remember who brought it up, but we decided to back and talk to the doctor about our misgivings. We did, oulining our reservations, fear and complaints with Wicked Witch Enterprises. It wasn't a bitch session so much as an airing of grievances, ending with a formal request for another doctor.
He didn't really react. I found this to be common. Doctors will recommend one another, but they'll never speak bad of one another. It's like a code or something. I wasn't expecting him to go on a tirade, but at the same time, if someone's doing a bad job, shouldn't they get called out on it? The best you'll ever get is "well, some people have great results." I'm sure they said the same thing about Mengele. "Yeah, there's that whole testing-without-anaesthesia thing, but the guy's always on time and he makes a terrific three bean salad."
We did end up getting a referral, though, and I never did get the port. The new team was on the north side of town. My appointment was in a week.
There are a handful of days that stand out like movie scenes in this whole ordeal, and this is one of them. It was a bright, sunny summer day. Clear skies. Not too hot, not too humid. A great day to be out for a walk. I remember the wind in my wife's hair as we walked toward the hospital. I turned to her and said "I don't know about this," and we started to talk about the port, which was really more symbolic of our faith in the Wicked Witch than anything else. Neither of us felt good about her. We stopped right on the sidewalk.
I don't remember who brought it up, but we decided to back and talk to the doctor about our misgivings. We did, oulining our reservations, fear and complaints with Wicked Witch Enterprises. It wasn't a bitch session so much as an airing of grievances, ending with a formal request for another doctor.
He didn't really react. I found this to be common. Doctors will recommend one another, but they'll never speak bad of one another. It's like a code or something. I wasn't expecting him to go on a tirade, but at the same time, if someone's doing a bad job, shouldn't they get called out on it? The best you'll ever get is "well, some people have great results." I'm sure they said the same thing about Mengele. "Yeah, there's that whole testing-without-anaesthesia thing, but the guy's always on time and he makes a terrific three bean salad."
We did end up getting a referral, though, and I never did get the port. The new team was on the north side of town. My appointment was in a week.
Tuesday, March 1, 2011
Thanks, Bob
The drive home was a whirlwind. There were so many things to digest, to discuss and decide. None of them good. I was really scared. So was my wife though she didn't show it.
Music had been a huge help for me through all of this. My car didn't have a CD player so I relied on my iPod for music for the most part. I went to a handful of sites to find out about new music and see what some of my favorite artists were up to. One blog I stumbled upon was http://www.fuelfriendsblog.com/, written by a woman in Colorado who frequently wrote about upcoming shows in her area and posted links to songs. One link was to a song called "Blow Me Back to You" by Bob Schneider. I knew nothing of Bob Schneider other than that he had dated Sandra Bullock at some point, but based on Heather's description, I downloaded the song.
For some reason it cut me to the bone, especially the second verse. I guess it's the proverbial space between the notes that do it. But the song was the closest I've ever been able to come to express to my wife how I felt at this point. I'd been putting up a front of confidence up to that point. I'd been confident and optimistic.
It's hard sometimes, especially for a guy, to put up thie fearless facade to everybody when you're scared shitless and utterly helpless to do anything to improve the situation you're in.
We sat and listened to the song in our car and cried. We were both really upset about the way things had gone at the Wicked Witch's office high in the tower. What to do, what to do.
Music had been a huge help for me through all of this. My car didn't have a CD player so I relied on my iPod for music for the most part. I went to a handful of sites to find out about new music and see what some of my favorite artists were up to. One blog I stumbled upon was http://www.fuelfriendsblog.com/, written by a woman in Colorado who frequently wrote about upcoming shows in her area and posted links to songs. One link was to a song called "Blow Me Back to You" by Bob Schneider. I knew nothing of Bob Schneider other than that he had dated Sandra Bullock at some point, but based on Heather's description, I downloaded the song.
For some reason it cut me to the bone, especially the second verse. I guess it's the proverbial space between the notes that do it. But the song was the closest I've ever been able to come to express to my wife how I felt at this point. I'd been putting up a front of confidence up to that point. I'd been confident and optimistic.
It's hard sometimes, especially for a guy, to put up thie fearless facade to everybody when you're scared shitless and utterly helpless to do anything to improve the situation you're in.
We sat and listened to the song in our car and cried. We were both really upset about the way things had gone at the Wicked Witch's office high in the tower. What to do, what to do.
Thursday, February 24, 2011
I'll Get You My Pretty...
After a review of all the tests, my neurologist informed me that not only was the tumor still there, there were now traces of it in my spinal fluid. That meant chemo. Next stop was a trip to see a very wicked witch who lived in the top of a tower, surrounded by a gaggle of inept harpies. (I'm not sure what you call a bunch of harpies so we'll just go with "gaggle" for now.)
I got there and did the usual -- name, birthday, filling out form after form. Did I have surgery? When? Did I have a family history of a thousand different illnesses? Did I have a pacemaker? Did I have change for a twenty? And so on. One would think that hospitals would share this information and keep it in a database, but one would be wrong. I answered this stuff every time I saw a new doctor.
I got ushered into a waiting room. In came two nurses. One old, one young, both stupid. The twentysomething kicked things off with "why are you here?" followed up with "have you seen a doctor?" and "are you allergic to penicillin?" I had already answered these and many, many more questions on the forms she was holding in her hand. After what seemed like an eternity, they left and another nurse came in. A black lady. Turned out Black Lady was the only empathetic, competent one in the office -- she would go on to interpret the strange questions and odd behavior for the rest of our visit. "She's new," Black Lady said of the young nurse. "No shit," I answered. Normally I have more patience for this kind of thing. We're all new at some point. But I don't think that Rare Brain Tumor is the time to let the newbie get her sea legs.
The best was yet to come. Finally, in strode The Wicked Bitch of the Midwest, my oncologist-to-be. A thin woman in her early sixties with the bedside manner of Joseph Mengele, she got right to the point, going over what I had and letting me know why chemo was the way to go. Like many evildoers, at first she made sense. Having endured the idiocy that had been displayed up to this point, my wife and let out a sigh of relief.
Then it got weird. She didn't ask me how I felt about things, if I had questions or how comfortable I was about the proposed treatment, the details of which we had yet to hear. Up to this point, all of my doctors had treated me as if I had a voice in my treatment; that I was part of the team. Not her. As far as she was concerned, it was all predetermined. We were just nailing down the details at this point. She acted as if someone had already explained all of this -- the logistics of treatment, possible side effects, what to expect, etc. -- prior to our visit.
She'd go in and out of the room for unexplained reasons -- presumably to look things up? Black Lady would come in intermittently to reassure us. The topper was when The Wicked Witch popped her head in and said, "oh, there's a good chance you'll end up sterile, so you might want to bank some sperm." How's that for an off-the-cuff remark?
My wife and I looked at each other with a mix of fear, anger and disbelief. What. The. Fuck?
The Wicked Witch came back and ran down the course of treatment, casually rattling off the chemo drugs they'd be pumping into me. Black Lady then took us on a tour of the facility where I'd be spending my time. A lot of time. At least three hours a day, every day, for weeks. I'd get weekends off, of course. It was an empty room of old-looking pink recliners lined up in a row, with the windows behind them. There were two TVs mounted on the wall at either end of the room. "Depressing" doesn't come close.
Next step for me was to get a port, a little device they implant in your chest that's continually hooked up to a vein. It makes it easier to get chemo and other treatments intravenously. They just attach the IV and away you go, just like gassing up the car. They'd already made an appointment for me.
Holy shit.
I got there and did the usual -- name, birthday, filling out form after form. Did I have surgery? When? Did I have a family history of a thousand different illnesses? Did I have a pacemaker? Did I have change for a twenty? And so on. One would think that hospitals would share this information and keep it in a database, but one would be wrong. I answered this stuff every time I saw a new doctor.
I got ushered into a waiting room. In came two nurses. One old, one young, both stupid. The twentysomething kicked things off with "why are you here?" followed up with "have you seen a doctor?" and "are you allergic to penicillin?" I had already answered these and many, many more questions on the forms she was holding in her hand. After what seemed like an eternity, they left and another nurse came in. A black lady. Turned out Black Lady was the only empathetic, competent one in the office -- she would go on to interpret the strange questions and odd behavior for the rest of our visit. "She's new," Black Lady said of the young nurse. "No shit," I answered. Normally I have more patience for this kind of thing. We're all new at some point. But I don't think that Rare Brain Tumor is the time to let the newbie get her sea legs.
The best was yet to come. Finally, in strode The Wicked Bitch of the Midwest, my oncologist-to-be. A thin woman in her early sixties with the bedside manner of Joseph Mengele, she got right to the point, going over what I had and letting me know why chemo was the way to go. Like many evildoers, at first she made sense. Having endured the idiocy that had been displayed up to this point, my wife and let out a sigh of relief.
Then it got weird. She didn't ask me how I felt about things, if I had questions or how comfortable I was about the proposed treatment, the details of which we had yet to hear. Up to this point, all of my doctors had treated me as if I had a voice in my treatment; that I was part of the team. Not her. As far as she was concerned, it was all predetermined. We were just nailing down the details at this point. She acted as if someone had already explained all of this -- the logistics of treatment, possible side effects, what to expect, etc. -- prior to our visit.
She'd go in and out of the room for unexplained reasons -- presumably to look things up? Black Lady would come in intermittently to reassure us. The topper was when The Wicked Witch popped her head in and said, "oh, there's a good chance you'll end up sterile, so you might want to bank some sperm." How's that for an off-the-cuff remark?
My wife and I looked at each other with a mix of fear, anger and disbelief. What. The. Fuck?
The Wicked Witch came back and ran down the course of treatment, casually rattling off the chemo drugs they'd be pumping into me. Black Lady then took us on a tour of the facility where I'd be spending my time. A lot of time. At least three hours a day, every day, for weeks. I'd get weekends off, of course. It was an empty room of old-looking pink recliners lined up in a row, with the windows behind them. There were two TVs mounted on the wall at either end of the room. "Depressing" doesn't come close.
Next step for me was to get a port, a little device they implant in your chest that's continually hooked up to a vein. It makes it easier to get chemo and other treatments intravenously. They just attach the IV and away you go, just like gassing up the car. They'd already made an appointment for me.
Holy shit.
Wednesday, February 16, 2011
It's Alive! Alive!
Next up was an MRI to check my progress. They ushered me in and I got my cotton gown on and all that. First step was a blood draw. I got taken back into a room with many bays, all seperated by thin curtains.
So I'm sitting there waiting for the nurse to get whatever she needed to get, and I hear a nurse, mom and little girl in the bay next to me. I never saw them, but I'm guessing the girl was probably nine. She had to have an MRI and was clearly scared. I could hear the terror in her voice as she struggled not to cry. It was heartbreaking. I seriously considered going over there and telling her it wasn't a big deal; that I'd been through much worse and I was fine. Hey, just look at me! Here I am! It won't be a big deal!
I should add that at this point I had six big-ass shiny staples on the top of my head, keeping things together.
I reconsidered. If some strange man with mangy hair and a row of industrial staples in his head comes into your room when you're already shitting bricks, a well-intentioned word of assurance probably isn't going to mean all that much. I'd be thinking "Holy shit! What's next for me??" I stayed put and just tried to send her good vibes.
So I'm sitting there waiting for the nurse to get whatever she needed to get, and I hear a nurse, mom and little girl in the bay next to me. I never saw them, but I'm guessing the girl was probably nine. She had to have an MRI and was clearly scared. I could hear the terror in her voice as she struggled not to cry. It was heartbreaking. I seriously considered going over there and telling her it wasn't a big deal; that I'd been through much worse and I was fine. Hey, just look at me! Here I am! It won't be a big deal!
I should add that at this point I had six big-ass shiny staples on the top of my head, keeping things together.
I reconsidered. If some strange man with mangy hair and a row of industrial staples in his head comes into your room when you're already shitting bricks, a well-intentioned word of assurance probably isn't going to mean all that much. I'd be thinking "Holy shit! What's next for me??" I stayed put and just tried to send her good vibes.
Wednesday, February 9, 2011
Mah Momma's A Good Kisser
A few days after the surgery they asked me to come back in to see how I was doing and get a few tests done.
First was the CT scan. It wasn't all that different from an MRI except for the fact that I had to drink this thick Slurpee-like concoction about a half hour before I went in. No biggie. I brought a book and was prepared to wait it out. Only problem was the Clampett family.
An obese, soda-chugging family of six, they all accompanied Grandma to the hospital for her CT scan. Every thought was spoken aloud, often simultaneously and at top volume. In the all-too-short time we spent together, I learned that Mr. Clampett was suprised to learn of a new $3.99 deal at Long John Silvers ("THAT'S A GOOD PRICE FOR WHAT YOU GET!"), that Dolly, the twentysomething with inappropriately tight sweatpants got to taste flavored coffee for the first time ("HEY DAD THEY HAVE FLAVORED COFFEE. I MIGHT TRY IT. IT'S GOOD!") and other touching, tender moments people feel compelled to share on Facebook.
At first it was mildly entertaining, but the charm wore off quick. I kept looking around to see if anyone else was annoyed by this tsunami of stupidity that had descended upon the waiting room, but everyone else acted as if it was just another Thursday.
I chalked my profound irritation up to the steroids I was still taking and soldiered on. I must've read that same sentence in my book ten times if I read it once. Mercifully, I got called back for my test, which turned out fine.
First was the CT scan. It wasn't all that different from an MRI except for the fact that I had to drink this thick Slurpee-like concoction about a half hour before I went in. No biggie. I brought a book and was prepared to wait it out. Only problem was the Clampett family.
An obese, soda-chugging family of six, they all accompanied Grandma to the hospital for her CT scan. Every thought was spoken aloud, often simultaneously and at top volume. In the all-too-short time we spent together, I learned that Mr. Clampett was suprised to learn of a new $3.99 deal at Long John Silvers ("THAT'S A GOOD PRICE FOR WHAT YOU GET!"), that Dolly, the twentysomething with inappropriately tight sweatpants got to taste flavored coffee for the first time ("HEY DAD THEY HAVE FLAVORED COFFEE. I MIGHT TRY IT. IT'S GOOD!") and other touching, tender moments people feel compelled to share on Facebook.
At first it was mildly entertaining, but the charm wore off quick. I kept looking around to see if anyone else was annoyed by this tsunami of stupidity that had descended upon the waiting room, but everyone else acted as if it was just another Thursday.
I chalked my profound irritation up to the steroids I was still taking and soldiered on. I must've read that same sentence in my book ten times if I read it once. Mercifully, I got called back for my test, which turned out fine.
Tuesday, February 1, 2011
The B Team
While hospitals do offer round-the-clock care, it sure isn't consistent. I had great care across the board during the day. But after 5pm you get the B team, and that's being generous. You'd think that they'd mix the newbies in with the veteran nurses to help them get a grasp on things but you'd be wrong. I saw a number of nurses that night, and the one who knew what she was doing left around 11pm. After that you're in the hands of rookies and idiots.
Morning couldn't come soon enough. Once it did, the doctor came in to see me. He looked at my scar, which was held shut with some serious metal staples. I looked a little Frankenstein-y. He asked how I was doing and had me do a few exercises/movements to make sure everything was working properly and sent me on my way.
I hadn't done a whole lot of moving in the past 24 hours, so it was a little strange getting wheeled back into the world. The sun seemed really bright. It was surreal seeing all the people walking around. I got in the care and went home.
Morning couldn't come soon enough. Once it did, the doctor came in to see me. He looked at my scar, which was held shut with some serious metal staples. I looked a little Frankenstein-y. He asked how I was doing and had me do a few exercises/movements to make sure everything was working properly and sent me on my way.
I hadn't done a whole lot of moving in the past 24 hours, so it was a little strange getting wheeled back into the world. The sun seemed really bright. It was surreal seeing all the people walking around. I got in the care and went home.
Wednesday, January 26, 2011
The Douche Crew
My wife figured out how to extend the lounge chair into a mini bed and we settled in for the night. The irony of all this is that they come in every twenty minutes or so to make sure that you're still alive and/or give you another pill. Still, we managed to get a little sleep.
Then the weather turned shitty. The National Weather Service, who had done a crap job the week before in regard to issuing a severe storm warning that resulted in some serious property loss, made up for it and overcompensated by issuing a tornado warning. A tornado warning means that one's been sighted and you should find cover immediately. If you live in the Midwest, all this means is that everyone should leave the house as soon as possible and stand in the middle of the street to watch the storm roll in with the neighbors.
Unless you're in the hospital. Their policy was to get everyone away from the windows and keep them there until the Weather Service cancelled the warning, which could and often does last for hours. The nurses and orderlies dutifully herded and wheeled everyone into an interior hallway. It looked like a M*A*S*H* unit -- IVs all over the place, people with all sorts of bandages, beeping machines and beds lined the hallway. I was doing okay enough to walk, but it was still tremendously uncomfortable.
The cherry on the sundae was the three very loud, very dumb frat boys who talked about stupid shit the entire time. I didn't expect a dissertation on the ramifications of Voltaire's Candide but sweet Christ were they trying. And since one of them worked there, we couldn't really say anything. All I could do was watch the TV as the menacing green blob slowly moved to the east and we were finally allowed to go back to our rooms. It probably lasted a couple of hours, but Dane Cook and Friends made it seem like an eternity.
Then the weather turned shitty. The National Weather Service, who had done a crap job the week before in regard to issuing a severe storm warning that resulted in some serious property loss, made up for it and overcompensated by issuing a tornado warning. A tornado warning means that one's been sighted and you should find cover immediately. If you live in the Midwest, all this means is that everyone should leave the house as soon as possible and stand in the middle of the street to watch the storm roll in with the neighbors.
Unless you're in the hospital. Their policy was to get everyone away from the windows and keep them there until the Weather Service cancelled the warning, which could and often does last for hours. The nurses and orderlies dutifully herded and wheeled everyone into an interior hallway. It looked like a M*A*S*H* unit -- IVs all over the place, people with all sorts of bandages, beeping machines and beds lined the hallway. I was doing okay enough to walk, but it was still tremendously uncomfortable.
The cherry on the sundae was the three very loud, very dumb frat boys who talked about stupid shit the entire time. I didn't expect a dissertation on the ramifications of Voltaire's Candide but sweet Christ were they trying. And since one of them worked there, we couldn't really say anything. All I could do was watch the TV as the menacing green blob slowly moved to the east and we were finally allowed to go back to our rooms. It probably lasted a couple of hours, but Dane Cook and Friends made it seem like an eternity.
Tuesday, January 18, 2011
J-E-L-L-O
I woke up in my room and the first person I saw was my wife. What a warm relief that was. She was smiling the brightest, warmest smile and things were instantly better. Words truly fail me. It was such a comfort to see her as soon as I came to.
We spoke for a bit and I talked to my folks. Though my mom did her best to hide it, I knew she'd been worried sick. I'm sure it was a relief for her to see that I'd not only made it through but had all my faculties. Had I been thinking, I would've yelled something in Spanish or in a made-up language, but the anaesthesia had the upper hand. The nurses came in to make sure I was okay and to get me started on what would be a night full of IV drips, injections and pills.
My head was bandaged up but I could see with both eyes. One of the first things I wanted to see was a hospital menu. It was mid-afternoon and I hadn't eaten since the night before. I was ravenous. I probably would have even eaten a slice of Sandra Lee's Kwanzaa Cake and asked for seconds. The nurse brought me a menu and suggested I take it easy since anaesthesia can make some people nauseous. I got spaghetti and meatballs and some red Jell-O.
The Jell-O arrived first. A lot of people make fun of Jell-O, saying it's strictly for honkies, Jell-O shots and after-funeral lunches. And they're right. But it's also pretty goddamn delicious when you haven't eaten in sixteen hours.
After that I talked briefly with one of our former customers from our bakery for a bit and just rested. I was happy to learn that I'd be getting a morphine drip. I, like most Americans, had heard great things about morphine and was looking forward to it and all of its wondrous narcotic properties. Sadly, all it did was dull the pain.
Which was surprisingly minimal. You'd think that getting your head cut open would make the top three on the Holy Shit That Hurts list, but I was more sore from the screws in the halo than the divot in my skull.
After the spaghetti (which also tasted as if Jesus Himself had made it) I rested and tried not to move too much so I wouldn't disturb the IV. My bed was almost supernaturally comfortable. Though the matress was thin, it had these pumps that'd continually adjust to support your body in whatever position you were in. I could also control the TV (I think -- morphine's a hell of a drug. At one point I'm sure I thought I could control Prince Charles and/or the weather in Peru) from my bed. It was pretty sweet. If it wasn't for the whole sickness/surgery thing, I'd get one for home.
We spoke for a bit and I talked to my folks. Though my mom did her best to hide it, I knew she'd been worried sick. I'm sure it was a relief for her to see that I'd not only made it through but had all my faculties. Had I been thinking, I would've yelled something in Spanish or in a made-up language, but the anaesthesia had the upper hand. The nurses came in to make sure I was okay and to get me started on what would be a night full of IV drips, injections and pills.
My head was bandaged up but I could see with both eyes. One of the first things I wanted to see was a hospital menu. It was mid-afternoon and I hadn't eaten since the night before. I was ravenous. I probably would have even eaten a slice of Sandra Lee's Kwanzaa Cake and asked for seconds. The nurse brought me a menu and suggested I take it easy since anaesthesia can make some people nauseous. I got spaghetti and meatballs and some red Jell-O.
The Jell-O arrived first. A lot of people make fun of Jell-O, saying it's strictly for honkies, Jell-O shots and after-funeral lunches. And they're right. But it's also pretty goddamn delicious when you haven't eaten in sixteen hours.
After that I talked briefly with one of our former customers from our bakery for a bit and just rested. I was happy to learn that I'd be getting a morphine drip. I, like most Americans, had heard great things about morphine and was looking forward to it and all of its wondrous narcotic properties. Sadly, all it did was dull the pain.
Which was surprisingly minimal. You'd think that getting your head cut open would make the top three on the Holy Shit That Hurts list, but I was more sore from the screws in the halo than the divot in my skull.
After the spaghetti (which also tasted as if Jesus Himself had made it) I rested and tried not to move too much so I wouldn't disturb the IV. My bed was almost supernaturally comfortable. Though the matress was thin, it had these pumps that'd continually adjust to support your body in whatever position you were in. I could also control the TV (I think -- morphine's a hell of a drug. At one point I'm sure I thought I could control Prince Charles and/or the weather in Peru) from my bed. It was pretty sweet. If it wasn't for the whole sickness/surgery thing, I'd get one for home.
Tuesday, January 11, 2011
Watch What Happens When I Press...Here!
The operating room didn't look like I thought it would. The predominant colors were white and gray, but I was expecting something...brighter, I guess. There were about six other people in the room that I could see, and all of them had a particular job they were getting ready for. The anaethesiologist and his student assistant gave me a shot to get things moving.
One thing you don't hear about very often is that you're going to be awake during the surgery. This is to make sure they don't do something that'll turn you into a country music fan or vote for Sarah Palin. So while I was getting anaesthesia, I wouldn't be out the whole time. They could and would be giving me something to make me forget about it though. So I had that going for me.
I got all warm and calm and they put a little tent up to cover my eyes. Probably for the best. There was classical music playing somewhere and we were off to the races.
They kept asking me questions. First, to make sure I was cognizant and second to check the progress of the anaesthesia. The questions were pretty basic -- stuff like "what day is it?" and "what's your wife's name" as well as whether or not I felt anything. I felt calm through all of it.
Because of the drugs, my memory of the actual surgery is a little hazy. One thing I remember quite clearly is the sound of my skull being opened. It sounds pretty much like you'd expect -- kind of a wet crunch and a crack. It didn't scare me and I didn't freak out. They were talking to each other and doing their thing. I could've been at the beach as far as I was concerned. I just kept talking and answering questions. Hopefully the line of questioning was on the up and up. I probably would've sung like a canary on all sorts of topics and had no memory of them afterwards. You could learn a lot about someone.
It took some time to get to the tumor, but when he did I remember there being some comments. Stuff like, "Here's the first sample" and so on. They sent it to a pathologist. I remember thinking that the fucking pathologist better be in the goddamn room next door and not across town. I also remember wondering how it would be presented to him/her. Would it be in a jar? Raced across town in an Igloo cooler? In some guy's hand?
I don't know how long it took for him/her to check it out, but the doctor asked me if it'd be okay for them to get another sample of the tumor for future reference and so students could study it since it was so rare.
Well, since you have the hood up, why the hell not? I said sure. If it would prevent anyone else from having to go through this, I'm all for it.
At this point the doctor reiterated that I should tell him if I felt anything. I did. It felt as if there was a thick string connecting my ears and someone was plucking it. It didn't hurt and it didn't make me piss my pants or anything, but it's not something you'd really like to experience if you can help it.
I said "Hey!"
Things got real quiet.
The doctor calmly asked if I was alright. I replied that it was fine, but it felt as if someone was tugging on the aforementioned string. He took a deep breath and said "okay." Things progressed without incident.
I don't remember much after that, but I do remember being wheeled out of the operating room, thanking everyone for doing such a great job. I have no idea if it was polite and classy or more like Motley Crue leaving the stage after a concert. Probably the latter. "Thank you! Goodnight Tulsa!"
One thing you don't hear about very often is that you're going to be awake during the surgery. This is to make sure they don't do something that'll turn you into a country music fan or vote for Sarah Palin. So while I was getting anaesthesia, I wouldn't be out the whole time. They could and would be giving me something to make me forget about it though. So I had that going for me.
I got all warm and calm and they put a little tent up to cover my eyes. Probably for the best. There was classical music playing somewhere and we were off to the races.
They kept asking me questions. First, to make sure I was cognizant and second to check the progress of the anaesthesia. The questions were pretty basic -- stuff like "what day is it?" and "what's your wife's name" as well as whether or not I felt anything. I felt calm through all of it.
Because of the drugs, my memory of the actual surgery is a little hazy. One thing I remember quite clearly is the sound of my skull being opened. It sounds pretty much like you'd expect -- kind of a wet crunch and a crack. It didn't scare me and I didn't freak out. They were talking to each other and doing their thing. I could've been at the beach as far as I was concerned. I just kept talking and answering questions. Hopefully the line of questioning was on the up and up. I probably would've sung like a canary on all sorts of topics and had no memory of them afterwards. You could learn a lot about someone.
It took some time to get to the tumor, but when he did I remember there being some comments. Stuff like, "Here's the first sample" and so on. They sent it to a pathologist. I remember thinking that the fucking pathologist better be in the goddamn room next door and not across town. I also remember wondering how it would be presented to him/her. Would it be in a jar? Raced across town in an Igloo cooler? In some guy's hand?
I don't know how long it took for him/her to check it out, but the doctor asked me if it'd be okay for them to get another sample of the tumor for future reference and so students could study it since it was so rare.
Well, since you have the hood up, why the hell not? I said sure. If it would prevent anyone else from having to go through this, I'm all for it.
At this point the doctor reiterated that I should tell him if I felt anything. I did. It felt as if there was a thick string connecting my ears and someone was plucking it. It didn't hurt and it didn't make me piss my pants or anything, but it's not something you'd really like to experience if you can help it.
I said "Hey!"
Things got real quiet.
The doctor calmly asked if I was alright. I replied that it was fine, but it felt as if someone was tugging on the aforementioned string. He took a deep breath and said "okay." Things progressed without incident.
I don't remember much after that, but I do remember being wheeled out of the operating room, thanking everyone for doing such a great job. I have no idea if it was polite and classy or more like Motley Crue leaving the stage after a concert. Probably the latter. "Thank you! Goodnight Tulsa!"
Thursday, January 6, 2011
I Feel Pretty
If you're going to have brain surgery, you might as well do it first thing in the morning so you can get on with your day, right? More importantly, you want the doctors and nurses to be fresh and ready to go. Yes, they're professionals, but I don't want to be the third skull they're cracking open after a long day.
We got to the hospital early and they started to prep me. First I had to strip down to my boxers and put on the flattering gown. Next were compression hose. For those new to compression hose, they're white thigh-high tights that help prevent blood clots from forming in your legs when you aren't moving around and traveling through your system. As you can imagine, they're quite flattering.
Next was a quick shave of a section of my head (why not do the whole thing??) and, best of all, the halo. A halo is the poetic term for the medieval steel cage that goes around your head that is designed to keep you from moving during surgery. I get it -- one twitch from you and you wind up marching in place whenever someone turns on a microwave for the rest of your life. What doesn't make it into the TV shows is that they screw the damn thing into your skull. Read that last sentence again. There's not much they can do to anesthetize the area, either. So there's that.
Once I was all handsome and looking like an extra from a Marilyn Manson video, I met the doctor, the anasthesiologist (sp?) and Jackie, the absolutely awesome nurse who'd be wheeling me around for most of the morning. The anaethetist had a student with him. Did I mind if he observed the surgery? Why the hell not! Given the fact that I was in a baby blue dress wearing white tights and a metal cage on my head, I'd already lost any and all dignity. Bring the whole class!
They gave me the first of many shots, I said my goodbyes to my wife and family and I was wheeled down the hall.
We got to the hospital early and they started to prep me. First I had to strip down to my boxers and put on the flattering gown. Next were compression hose. For those new to compression hose, they're white thigh-high tights that help prevent blood clots from forming in your legs when you aren't moving around and traveling through your system. As you can imagine, they're quite flattering.
Next was a quick shave of a section of my head (why not do the whole thing??) and, best of all, the halo. A halo is the poetic term for the medieval steel cage that goes around your head that is designed to keep you from moving during surgery. I get it -- one twitch from you and you wind up marching in place whenever someone turns on a microwave for the rest of your life. What doesn't make it into the TV shows is that they screw the damn thing into your skull. Read that last sentence again. There's not much they can do to anesthetize the area, either. So there's that.
Once I was all handsome and looking like an extra from a Marilyn Manson video, I met the doctor, the anasthesiologist (sp?) and Jackie, the absolutely awesome nurse who'd be wheeling me around for most of the morning. The anaethetist had a student with him. Did I mind if he observed the surgery? Why the hell not! Given the fact that I was in a baby blue dress wearing white tights and a metal cage on my head, I'd already lost any and all dignity. Bring the whole class!
They gave me the first of many shots, I said my goodbyes to my wife and family and I was wheeled down the hall.
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