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.
Saturday, August 20, 2011
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.
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