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.

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.

It's Alive! Alive!

Next up was an MRI to check my progress. They ushered me in and I got my cotton gown on and all that. First step was a blood draw. I got taken back into a room with many bays, all seperated by thin curtains.

So I'm sitting there waiting for the nurse to get whatever she needed to get, and I hear a nurse, mom and little girl in the bay next to me. I never saw them, but I'm guessing the girl was probably nine. She had to have an MRI and was clearly scared. I could hear the terror in her voice as she struggled not to cry. It was heartbreaking. I seriously considered going over there and telling her it wasn't a big deal; that I'd been through much worse and I was fine. Hey, just look at me! Here I am! It won't be a big deal!

I should add that at this point I had six big-ass shiny staples on the top of my head, keeping things together.

I reconsidered. If some strange man with mangy hair and a row of industrial staples in his head comes into your room when you're already shitting bricks, a well-intentioned word of assurance probably isn't going to mean all that much. I'd be thinking "Holy shit! What's next for me??" I stayed put and just tried to send her good vibes.