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.

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.

Tortilla Flats

As soon as they found the tumor I got started on a regular dose of steroids. It was a small orange pill I took times a day, and the dosage gradually increased. The theory was that it’d help to delay or slow the growth of the tumor.

What they didn’t tell me was that the steroids would screw with my sleep, make me ravenously hungry, gain weight and turn into a raging asshole at the slightest provocation.

I was effectively turned into Dick Cheney but with more hair.

All these things increased in severity as my dosage increased, but it was the sleep deprivation that was the hardest initially. No matter what I’d done during the day – exercised, read before bed, had wine at dinner, abstained from alcohol – and no matter what time I’d go to bed I’d wake up between 2 and 4 and be up for the day.
And as I was losing sleep I became more and more irritable. I wasn’t driving as much since my vision was getting worse. That was probably a good thing, since I’m sure I would’ve wound up in a fight or accident.

But as time wore on, the anger became harder to control. Sometimes I’d be angry for absolutely no reason at all – just a black mood. Other times I’d fly off the handle at the smallest thing. Scariest of all was the loss of control I felt when it would happen sometimes. At its zenith it was like an out-of-body experience; I felt as if I was watching myself behave like a two year old.

Even on a good day, I’ve never been a fan of the public. Factor in the steroids and it made for a bad combination.

One afternoon my wife and I were at the grocery store, looking for tortilla chips. She’d mentioned that we should swing by the health food section of the store. I was tired, feeling lousy and cranky as usual. A young woman was busy stocking chips, and smiled and asked if she could help us. Most of the chips in the bags I picked up had been smashed to bits. My wife said “Oh, we’re just looking for some tortilla chips” and I interjected “Yeah, do you have any bags that haven’t been sat on yet?”

Now, in my defense, the vast majority of the bags had been beat to shit, with small shards of chips clogging the windows of most of them. But still, this woman hadn’t done it. That gave me no right to act like a complete asshole, especially when she was trying to be helpful. As soon as the words left my mouth I felt bad about it, but let my wife do the apologizing. Needless to say, we wrapped our shopping shortly thereafter.