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 chemotherapy. Show all posts
Showing posts with label chemotherapy. 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.
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.
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.
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 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.
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