Side Effects

It occurred to me today that I never really suffered from cancer, I mostly suffered from treatment of the cancer. Of course this would have changed over time I if I hadn't chosen to suffer treatment, I wouldn't around very long to complain about the side effects of "simple" cancer.

This is only one way a diagnosis of cancer changes your life. Right now my major complaint is the damage done to my throat from the Radiation Therapy.

Not many people (including me) ever think about the side effects of radiation because it's pretty low key. Side effects of chemo are usually pretty dramatic: vomiting and hair loss are pretty noticeable to other people. The administration of chemo is also pretty dramatic. Most people have surgery to implant a port a few weeks before the chemo starts, you're hooked up to a bags of chemicals that are essentially drain cleaner mixed with poison, the actual infusion can last hours, machines are beeping, and nurses are checking on you constantly during the infusion.

(Mostly it seems to make sure you remember your name and birth date, but I'm sure there are medical reasons too. One time, when changing my IV bag from drain cleaner to insecticide, the nurse asked me for my name and birthday and I answered without thinking "Same as last time!" She must have been new because she thought that was funny.)

Radiation is major stuff too, but it's sneakier. It's colorless, odorless, invisible, silent, and you can't taste it. The actual irradiation part takes only about 15 minutes and other than a few clicks and hums, there's nothing to indicate that anything is happening at all. There's no pain or any outward effect afterward to indicate that you been blasted by an atom smasher either. It takes awhile for radiation to do its damage (it's "work") and it takes a while for its work to fade away.

I can only speak for my particular case (head and neck radiation) and I was also doing chemo concurrently in order to make the RT more effective (more damaging). I'm sure there are other side effects I haven't dreamed about, but for those of you still reading, here's what I experienced and continue to experience nearly four months after RT.

Mouth Sores. Or Mucositis for those of us who like impressing people with medical words. Chemo can also cause mouth sores but in my case I was also receiving radiation to my face and neck. And what's on the inside of your face and neck? Your mouth and throat! The dosage, placement and timing of RT is very carefully calculated to cause the maximum amount of damage to the tumor site and the minimum amount of damage to the surrounding area, but collateral damage occurs nonetheless.

The mouth soreness was mild except when trying to eat. Mostly in the back of my mouth (right where the tongue dives into your throat), it was a burning that nearly always started on the right side. From there it would spread to the left side of my mouth and burn. Fortunately the pain was alleviated by water so a swallow of water would calm things down allowing me to continue eating. Everyone seems to be able to find a few foods that are more tolerable than others and I found mine: cream of wheat, processed chicken nuggets and jello. None of it tasted good mind you, but it at least it didn't hurt as much.

There's something called "Magic Mouthwash" that can be prescribed and mixed by any pharmacy. It's a concoction of viscous lidocaine (a topical anesthetic), diphenhydramine (an anti-inflammatory) and Maalox to help coat the tissues in the mouth.  Sometime it also contains Nystatin, an anti fungal to control yeast and fungal bloom in your mouth, a result of the immunosuppression brought on by chemo.

It tastes awful and after my first swig, I wasn't even sure I was supposed to actually swallow the stuff. I swore that I'd never use it, but wouldn't you know it, it ended up relieving a lot of pain. It's effects were fairly short lived, especially when I ate and drank right after taking it, but taken before bedtime, it lasted long enough for me to fall asleep before my throat woke me up.

Now there're no more mouth sores and I can eat a fairly normal diet except for acidic and spicy foods. Tabasco sauce and the like are naturally out of the question now, but even things like salad dressing, mustard (the cheap yellow kind) and ketchup (seriously!) are off limits. I don't know how long this will last, but I look forward to the day when I can eat without fear of pain.

Loss of taste. At first food tasted funny. Then it didn't taste like anything. Then everything tasted bad. I never realized how important the sense of taste was to survival, but it's there for a reason. In my case the first thing that went was sweetness. Eating chocolate ice cream was akin to eating cold cocoa. Candy bars were just sticks of chewy stuff that was hard to swallow. It took about a month after RT was finished for my taste buds to start recovering and I tried helping things along with zinc supplements. I read on the internet that zinc was crucial for the sense of taste and there was a lot of chatter about how mega doses of zinc would restore a sense of taste. I bought a bottle of generic zinc pills and doubled the recommended dose. Still not sure it helped anything, but my doctor said that my dosage couldn't hurt anything so why not?

The bright side of this is that my taste buds seem to have made a full recovery. My wife enjoyed the look of delight that accompanied the statement, "Hey!  I can taste (a formerly untasteable  food) now!"

Stiff jaw. The RT was concentrated on the right side of my face since that's where the original tumor site was, and the tumor sat pretty much of top of my right temporomandibular joint (that's where the jaw hinges to your skull).  Dr. Guierrer warned me about stiffening of the jaw and prescribed exercises to keep the joint from freezing up. I was pretty faithful about doing them (4-5 times each day) until the pain in the back of my mouth kept me from opening my mouth more than a little bit, say about the width of two soda straws.

Before RT started, I made a stack of tongue depressors that just fit between my front teeth to gauge my jaw's range of motion.  After RT was finished, I found that I lost about half my range, but it was mostly due to the mouth and throat pain -- not muscle and tendon stiffness. I regained most of my range once the pain abated, but still needed to do my exercises regain my previous range of motion. I still feel a little stiffness and pain when I open wide, but it's nothing major. It just serves as a reminder about what I went through.

Pain when swallowing. And I mean pain like swallowing razor blades (or what I imagine what swallowing razor blades would be like). Having a kidney transplant, I take a fair number of pills each day. Usually I pile them all up in my hand and throw them down my throat, then wash them down with a drink. Not during RT. What normally was a five second operation now took minutes as I swallowed each pill, one at a time. It wasn't just pills, it was any sort of solid or semi-solid food that hurt. There wasn't much to do about it except take small bites and work through it. Liquids didn't pose much of a problem, though they presented challenges of their own.

Enough griping for now!  I'll go on about how miserable I was in a later post.