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.

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.

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.

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!"

Me and My Friends

I had asthma and allergies as a kid, so I never had a pet. I did have some fish, but they don't really count. You can't really bond with a goldfish or an angelfish. For as long as I could remember, I wanted a dog.

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.

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.

Quest for Fiber

Between the steroids, painkillers and God knows what else, cancer treatment can, for lack of a better phrase, issue a cease and desist that cannot be overruled. Despite all the Lifetime Movies of the Week that offer a melodramatic take on cancer, you never see a cancer patient emerge triumphant from the bathroom with a wide smile on their face, haoled by beams of sunlight as harps and the chorus of a thousand angels herald a successful BM.
But there is hope. After a few weeks of torture, one becomes intimately familiar with fiber in all its forms. There's the Metamucil approach, in which you simply drink a glass of odd-tasting water. There's the uptake in vegetable consumption. There's exercise. There's laxatives. There are fiber-rich foods. You can eat as much fiber as you and all your respective bystanders can handle.
And then there's Fiber One.
I don't know who came up with the concept of Fiber One, but it's a good one: pack as much fiber as you can into whatever cereal-based carrier you can find, coat it in chocolate and call it good. It's not bad. It works for a while. For a brief, shining moment, I almost considered applying for a job as spokesman.
But it offers diminishing returns. After the honeymoon period, I was on the hunt for something more reliable, something that didn't require the rental of a power washer after the proverbial smoke had cleared.
That search ended after a short conversation with a nurse. Her recommendation: Senokot.
That might not seem like a blog-worthy post, but believe me, it is. This was just one of the many small but crucial details that never make it into all those magazines in the waiting room or the vague pamphlets they give you.

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.

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.

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.

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.

Any Port in a Storm?

The day I was supposed to get my port coincided with an update from my neurologist, whose office was across the street from the hospital. After we saw him, my wife and I began the walk across the street.

There are a handful of days that stand out like movie scenes in this whole ordeal, and this is one of them. It was a bright, sunny summer day. Clear skies. Not too hot, not too humid. A great day to be out for a walk. I remember the wind in my wife's hair as we walked toward the hospital. I turned to her and said "I don't know about this," and we started to talk about the port, which was really more symbolic of our faith in the Wicked Witch than anything else. Neither of us felt good about her. We stopped right on the sidewalk.

I don't remember who brought it up, but we decided to back and talk to the doctor about our misgivings. We did, oulining our reservations, fear and complaints with Wicked Witch Enterprises. It wasn't a bitch session so much as an airing of grievances, ending with a formal request for another doctor.

He didn't really react. I found this to be common. Doctors will recommend one another, but they'll never speak bad of one another. It's like a code or something. I wasn't expecting him to go on a tirade, but at the same time, if someone's doing a bad job, shouldn't they get called out on it? The best you'll ever get is "well, some people have great results." I'm sure they said the same thing about Mengele. "Yeah, there's that whole testing-without-anaesthesia thing, but the guy's always on time and he makes a terrific three bean salad."

We did end up getting a referral, though, and I never did get the port. The new team was on the north side of town. My appointment was in a week.

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.