Monday, December 5, 2011

The Loss Column

You gain some and you lose some when you've got cancer. You gain time, since you're laying around. It's a terrific opportunity to catch up on reading or those movies or a series like The Wire that you'd always meant to watch. The days can crawl by. You certainly gain knowledge and perspective.
But you can lose plenty too. For some it's weight and for others it's friends. It's often both.

You can't predict how someone will react when they hear you have cancer. A lot of people will feel sorry for you and offer help. Others will be faced with their own mortality and promptly freak out. You won't hear from them for a while, if at all. They'll avoid contact with you because it makes them feel uncomfortable. They'll wait until you're better to reconnect. At least that's what they're telling themselves.

Others won't really care at all. It's shocking and it stings, but it's true. The reasons for that differ from person to person, but the blame can be laid squarely at their feet. Maybe they're self-absorbed. Maybe they didn't like you that much in the first place. Maybe it's something else entirely. Regardless, it's not your fault.

You find out who your true friends are real quick.

The good news is that you'll be truly surprised by who comes through. Casual acquaintances, co-workers or neighbors you barely knew, friends of friends you've never met -- they will continually surprise and humble you with their love, support and encouragement. All of which will come from a very positive place.

Those are the people to dwell on. Those are the people you need to send the thank you cards and emails to. They're the ones that can help you get better.

As for the other half, "The ones who love us least are the ones we'll die to please," Paul Westerberg once sang and it's true. Focus on the people who are supporting you and forget those who aren't. Energy is a precious commodity when you're undergoing treatment, and it's best to focus that in a postive way.

As for the others? Fuck 'em. Write them off without any guilt.

Monday, October 3, 2011

Surprise, surprise, surprise.

One of the most irritating aspects of health care is the frequency of the surprises. Sometimes they're good (you're going to have a baby! You don't have lupus!) but more often they're bad (it's a cancerous tumor! You have gangrene!).

I don't know if it's because patients blur together and nurses and doctors forget what they've said to which patient or what, but I was continually surprised. I'd go in for an MRI only to find out it was a CT scan and that I had to drink some nasty syrup. I'd be told a test would take fifteen minutes and it'd take an hour and a half.

The latest surprise happened a full two years after my treatment had ended. I still go for occasional MRIs that are getting further and further out in terms of time, but they're still keeping an eye on me. The last time I went for my usual MRI I found out that I had a bonus test -- this one for bone density. Nobody had told me about the test, let alone that radiation and/or chemo could have an adverse effect on my bone density back when I was getting treated. They didn't tell me I was getting tested for it now, either. Thankfully, it's nothing more than a glorified X Ray, so it was painless. That, and the fact that I consume ice cream as if it's my job, ensured that my test turned out fine.

To that end, here are 10 questions you should ask your doctor. They're not hard. If he/she can't answer them, find another doctor. I don't mean to get all Star Jones on you, but really, they need to spend a little more time explaining this stuff so you're able to make an informed decision.

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.

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.

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.

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!"

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.