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.
Showing posts with label radiation therapy. Show all posts
Showing posts with label radiation therapy. Show all posts
Monday, October 3, 2011
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.
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.
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