November 02, 2003

Wayward Parotid Gland, Part 5

And this is it - the end.

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

Recovery is supposed to be the easy part after an experience such as what I've outlined, but there was little more than a "Phew, it's over" initially. After the final radiation treatment, I realized that within three days I really didn't feel any better. I was still dropping weight when I should not have been. I was still fatigued and "sunburned."

I forgot to mention last post that the other side effect I experienced was some hair loss. Everything in the radiation field vanished in unsightly clumps during weeks three and four. I had long enough hair to cover the missing hair in most circumstances, but for work I had to secure my hair back. This led to some creative coiffures (to say the least). Remember those banana clips from the 80s? I would secure my hair with one of those, and then pull the longer hair out over the missing (and the newly showing tattoos that were in the hairline), and it ALMOST looked normal. Unless, of course, you were lucky enough to be treated to my unrevised scar at the drive-through. KFC patrons of almost 12 years ago, I'm sorry about that. Kinda.

Another thing about radiation - after a while, you can smell it. At first I thought I smelled the radiation itself, and then, after a while, I was fairly sure I was smelling my skin burn. I explained this to a boyfriend years later, and he said that I was smelling ozone, a byproduct of the process. Who knows, really, and I'm not sure it's important, but it's a very distinct smell. And I cannot STAND to have my head immobilized. I didn't enter this affair with claustrophobia, but I left it with a twinge.

But what happens when you're healing is almost worse than the radiation because it's mental. You start to question everything. Did that really happen to me? No, really, did it? Was it that bad - as bad as I remember? Can I really call that "cancer?"

And then the guilt. Remembering the man with no nose and the little cosmetic "tent" to cover it. Remembering some of the people I met in the waiting room for radiation. One man was going in at the same time for lung cancer radiation. He and his female companion - presumably his wife - still smoked. And it was obvious that they smoked immediately before the appointment, as they smelled hideous. I wanted to smack these people and then shake them until their eyes wobbled. Hello, here's the clue phone. Take the call. YOUR BODY IS NOT YOUR FRIEND. It's merely a machine. And machines break down. If you don't maintain them, they may fall apart, and, the unspoken part about this is that when the machines fall apart, there ain't no fixing the computer therein. You MUST MAINTAIN. Otherwise, why waste the money on radiation. Just go home and smoke and die.

And then I was angry (okay, I was probably a bit angry the whole way through but too exhausted to notice). I was angry at all of those people who failed to take care of themselves but faced no ramifications for their actions. I was angry at all of the purported "friends" I had who didn't bother to call or write, even though they were in the same city. I was angry with people who had normal problems like break-ups and failing grades.

I was envious. My mother was teaching, and she had all of these people who were gushing wonderful support in her general direction. Cards, letters, phone calls, I had a big wonking scar, a peeling face, and a Nintendo with which to wile away the days while I was regaining strength. Whoop-di-damned-do. If I let myself, I can still be quite bitter.

And then I was panicked and depressed. Yes, strangely, the recovery part of this whole mess was indeed the worst. Who was I? Had I changed? Could I even remember who I was before this whole ordeal? As the taste buds came back, I began to widen my palette. Potato chips and Doritos were soon all right - within about three weeks (a veritable array of health food, no?) And with eating myself out of starvation mode, I gained weight. What woman wants to gain weight? Not this one, even when her body was borderline emaciated. What IS a body image when the mind's as messed as mine was. I was too weak to really exercise, and I was gaining at a rate of a couple of pounds a week.

At about five weeks past the last date of radiation, I had my first "normal" experience with food. We were sitting in a restaurant in Florida, and I suspected that I would soon be able to taste things normally, so I asked for an appetizer of mozzarella cheese sticks with marinara. And, yes, the appetizer tasted normal. A sign of true recovery.

Eventually, I returned to work at KFC - probably just a bit before this. I worked from the end of March through the long dull summer, and I returned to marching band and classes in August. I'd been practicing my trumpet as best I could from late March on through, and with the help of some fake saliva when trumpet needs became overly intense, I was able to play fairly well. I have never regained the tightness of embouchure that produces an exemplary brass instrument tone, but the fluidity of my tongue and other important parts in playing an instrument was actually increased now that it was unhindered by the gargantuan tumor. Fake saliva kinda tastes like the yeast in bread dough. You get used to it.

In December of 1992, I had plastic surgery to reduce the surface area of the scar. This was my mother's idea, and it was one of the wisest decisions of my adult life. I came out of the surgery wearing steri strips, no stitches. Within two weeks, even though the area was still angry, there was a marked difference. Eleven years later, the thing is about a quarter to half the width that it was, and it no longer protrudes. Instead, it lies in the crease of my neck. I wear my hair up probably half the time - always at the gym. I don't think many people notice.

There are other physical deformities and issues that remain from having one side of my face cut open and laid across the other side. I have a dent where the gland was removed - a divot. If you catch me from the proper angle in a photograph, this is pretty apparent. My two ears are different, also. One, the left (normal side) is quite a bit longer than the other. And, about a year ago, I had to have most of the teeth on my right side "appended to" because of the changes in chewing I've adapted over these years to compensate for the changes in my facial structure. It's amazing that the dentist can do this - it's completely changed my bite. And it'll likely have to be done again at some point. On one tooth, I had worn all the way through the enamel with the course of normal use.

With some time, I began to see myself as normal, which is a large step in the emotional recovery. Most of the anger went away when I was able to busy myself with classes and work and "normal" activities. Romance and other early 20s life experiences became a part of my life.

And the years passed.

I hope I'm a better person because of what I've been throughm and I also hope that I can help others who have the same fears, the same anger, and the same scars. But you never really know - no experience is the same.

I did this for me because I've wanted to write it for some time now. Thank you for reading.


Posted by hln at November 2, 2003 12:03 AM | Anecdote

Thank you for writing that. It sounds very wrong to say "I enjoyed reading this" but that's the only way I can describe it. On one hand, it was eye-opening. On the other, it put into perspective some experiences of mine that I still struggle with.

I really enjoy reading your words. I intend to become a long-standing visitor. I think that's the best compliment I can give. :)

Posted by: Jennifer at November 2, 2003 09:54 AM

Maybe it's on my end, but I can't get the link to Part Three to connect. I've read the other parts and this is a wonderful post. Well organized, detailed, heartwarming, and, above all, honest. You put a lot of yourself into words, doing the difficult, very well.

Posted by: Interested-Participant at November 2, 2003 11:02 AM

Very brave of you. Sometimes one just needs to get it out there.

Hopefully, other people who've had cancers can read this, and know that they're not going insane, that this stuff happens. And people who do dangerous stuff like smoke might read this and be more inclined to quit.

Thank you for sharing.

Posted by: Courtney at November 2, 2003 11:36 AM

Well done.

As for your friends who didn't write, call or visit; it's very tough call. On one hand, cancer (or other serious illneses) scares the bejeezus out of people; reminds them of their own mortality. The toughest phone call I ever had to make was to a relative who had pancreatic cancer. We both knew it was game over for him at that time; I'd visited him when he was undergoing radical and aggressive chemo. Thankfully, he and I were able to concentrate on the good times and remembrances and to keep the grief to a minimum.

OTOH, you'll know those did write and call and visit will always be there for you--no matter what.

It's often said--usually with a lot of accompanying bluster and chest-thumping--what doesn't kill you will make you stronger. It's sad, if that's the lesson learned. What doesn't kill you should make you more compassionate; embrace the pain, fear, uncertainty, isolation, discomfort, etc. and understand others--experiencing similar upheavals--may not enjoy the support, care, coping mechanisms, economic security you had.

Posted by: JadeGold at November 2, 2003 12:34 PM

I guess I left off the most important part of the post.

I'm a better person because of this. I was an adult at 19 years of age - no question.

Last week, I found a forum - an ACTIVE forum for people who've had similar experiences. I've been looking for something like this for years now, and it landed in my lap when I did a simple search for "parotid" on Google. And there it was.

I've been posting on it like mad, and from the stories I've read, my experience lies somewhere in the middle. There are people who've lost their facial nerves. There are people who've had five and six surgeries because of recurrences. Questions about whether or not to undergo radiation when the initial doctor recommends it. Worries and fears about scarring.

One of the proudest days was in Columbia, MO at a Relay for Life. Cancer survivors are given special colored t-shirts, and the event is "kicked off" by the survivors taking a lap around a high school track.

I ran my ass off - passed most of the rest of them.

Grinning the whole way.


Posted by: hln at November 2, 2003 01:33 PM

Hi Heather, I posted a reply through the forum the other day, just saying I thought your page was really well done. I hadn't read all of the articles on it but now have, and I felt exactly the same when you said you watched people smoking and destroying their bodies. I kept feeling like going over and kicking them, because it made me so resentful that I who didn't smoke, had this stinking cancer, and here they were, with barbequed lungs, walking around nonchalantly. Mind you, probably most of them have something yuk going on inside that has yet to appear on their horizons. Also, while going through radiation, I would look out my window and see neighbours etc.going about their hum drum boring lives, and would think, if I could have a boring hum drum life without cancer I would be so pleased. But it is not to be, I would see people at the hospital with no nose, chunks out of their faces etc., and think "Life isn't bloody well fair"! On that happy note, all the best, and you have done such a neat job, Pat from New Zealand

Posted by: Patricia at November 3, 2003 06:09 AM

Thanks for sharing.

Posted by: Ted at November 3, 2003 06:49 AM

Hi Heather,
Well done, you expressed the emotions of this trip perfectly. At times it was like reading my own life story of the last 2 years.
Best wishes

Chris G

Posted by: Chris G at November 3, 2003 08:09 AM