October 30, 2003

Wayward Parotid Gland, Part 4

I've turned off comments for this post. If you do have something to say or a similar experience, my e-mail is

Part One is located here.
Part Two is located here.
Part Three is located here.

Sometime during the week of January 6, 1992, I attended a radiation preparation appointment. You might not think that a lot of preliminary work goes into something like radiation treatment, but you'd be mistaken. For one, the field of radiation for me would be a significant portion the right side of my face, extending well into my hair, toward the back of my head. My neck all the way to my thyroid on the right side was also in the field.

One of the first items to be done was tattooing. I have six of these puppies. Basically, you are "marked" so that your field can be realigned from day to day, and these marks are permanent. Early in the process, I learned, lines would be drawn on my skin each day, sort of connecting the tattoos, to aid the process. I had been concerned I'd have to walk around with lines semi-permanently drawn on my face for six weeks, but that turned out to be unnecessary with this process. Since the tattoos are just tiny green dots, each just felt like a shot, and then it was over. Six times. Over.

Then, it was time to make the mold so that my head would lie immobilized during each session. This proved problematic after a couple of tries and scrapped molds, but we quickly learned that my neck was flexible enough to lie flat consistently without a mold. Then, we practiced the process strapping my head in place, probably trying to lessen the freak-out factor on radiation commencement day.

During the consultation we reviewed the possible and probable side effects of the radiation. The list is extensive, including nagging persistent sore throat, skin irritation akin to a very bad sunburn, mouth sores, loss of appetite, changes in taste, general malaise, and difficulty swallowing.

I can best explain the general malaise part as an athletic "bonk." You're exhausted. Your head isn't with your body, and, while you're not necessarily hungry (you may even be nauseated), you feel like you haven't an ounce of energy in your body. But I didn't know that yet.

There was some good news. A good portion of my facial function was back. I began to talk more normally and smile, and this would improve eventually to normal facial function and about half of the numbness remaining after the surgery.

And then it was the 13th. I was working full time at my long-time job, shift manager at KFC. We were short on management at the time, so, since I was not going back to school for that semester, I was managing four to five day shifts during the week. I opted for very early morning radiation at 7 a.m., so I could finish the process, arrive at work, wash off the markings, and begin a "normal" day. I tried to keep everything as normal as possible.

Radiation takes about 15 minutes each day. This includes preparation, morning greetings (the social aspect of any medical procedure when you see the same people consistently), and unstrapping/leaving. The actual radiation treatment process took less than a minute, I believe that process being the point where I'm strapped under the linear accelerator and the machine is running.

That first week, I felt all right. I had no appetite, but other than that, I was able to function normally. I lost 6 pounds and was barked at for this behavior, but I was able to gain a couple back during the next week or at least hold steady, so it didn't seem so bad.

It was during the third week that life began to change fairly dramatically. Somehow, I had mentally settled into working-not-school mode, and that was just "life." I seem to be able to adjust fairly quickly to most things, and I'd say this qualifies as a quick adjustment. But, during the third week, I sat down in the KFC office to eat a snack of cherry pie (mmm, healthy!). I grabbed a fork, opened the package, and then took the first bite.

Salt. And a hint of cherry.

I was fairly disbelieving, so I tried again. Perhaps someone was playing a joke. No. Salt.

This will mess with your head.

Needless to say, I didn't finish the piece of pie. Over the next few days I would lose ALL sense of taste but salt. Water = salt. Lettuce = salt. Salt = salt.

I learned a lot of food things pertaining to my new strange condition by trial and error. I learned that purified water tasted MOSTLY normal. So did hot dogs because they have a hint of salt. I could eat one hot dog and then the sheer emotional effort of eating became to be too much. I learned I could tolerate grilled cheese sandwiches. And breaded mushrooms. This was over the course of the next two weeks.

I was supposed to be consuming 2500 calories a day - the ideal being a mostly healthy diet with a lot of lean protein. As the days passed over the third through fifth weeks - even as I discovered the things I could force myself to eat - I was lucky to be consuming 1000 - 1200, and those were by sheer force. Oh, and by the third week I was plagued by a constant sore throat which continued to worsen to the point of dreading to swallow. Vitamins were soon out of the question.

Essentially, I was starving myself. It wasn't on purpose, but I wasn't hungry, and I certainly did not WANT to eat because eating was such an exasperating experience. But, as a result of the process of not really feeding myself in addition to the "general malaise" brought on by the radiation left me unable to work (too weak) in the middle of the process. There was at one point also talk of IV feedings, but I found the hot dogs and grilled cheese right about this point and was able to avoid that.

I don't remember too much of the time frame between the fourth and sixth weeks both because of illness and the similarity of one day to the next. I know that I had an appointment with Dr. Wolfe and that he asked me if I had started to sweat while eating. I was confused - this was a new thought, and it hadn't yet happened. That's where he mentioned Frye's syndrome why it might occur, and darn it, it popped up the NEXT DAY.

I had to take a Thursday and Friday off of treatment because my skin was too irritated to continue. This pushed the "end date" of radiation into early March.

Which came eventually, and though radiation was over, I experienced much of "what they don't tell you." What they don't tell you is fairly important, like, these side effects you experience don't go away when radiation ends. Like, you'll feel them for another six weeks, and eventually and slowly you'll return to normal function. I was very optimistic during the first three weeks that in three more weeks it would all be over. At the end of radiation, it was very apparent that only my morning appointments were ceasing, not the sore throat, eating issues, and "general malaise."


Posted by hln at October 30, 2003 08:29 AM | Anecdote