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.

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.

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.

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.

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.

Point and Click

After all the tests and back and forth, my neurologist and oncologist agreed that they'd need to do a biopsy on the tumor so the oncologist would know exactly what he was dealing with. They'd been reading up on my special snowflake of a tumor, which was remarkably rare. Par. In order to get that biopsy, they'd have to do brain surgery. The date was set for a morning in June. I had two weeks to get ready.

Since the tumor was in such a delicate spot, they'd go in and get a small chunk of it for the pathologist to study. Then, they'd use that info to determine the best way to get rid of the thing. They'd literally be going through my brain in order to get to it. I would be awake the whole time.

Naturally, I had questions. Would this hurt? Would I be able to feel anything? Would I shit my pants whenever I heard a doorbell for the rest of my life?

Thanfully, the answer was 'no' to all these questions. The brain has no nerve endings, so there'd be no pain and I likely wouldn't feel anything. Your brain is more permeable than you'd think -- the fibers of the tissue have some give and would allow the needle/instrument to go right into my brain without cutting or puncturing any of the surrounding tissue. It'd be like when you insert your hand into a tree or bush -- you can touch the center of it, but when you remove your hand the tree's fine. It's in the exact same shape it was before you put your hand into it. It'd be the same thing with my brain.

However. There was a 30% chance I could die. On top of that, since the tumor was right up against my optic nerve, there was a chance I could go blind. Not the greatest odds, but I didn't have much of a choice. The tumor was growing by the day, and had shown no signs of slowing.

I had a lot of faith in the doctor who'd be performing the surgery, so we set a date. I had a couple weeks to get ready.

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.