Short Circuits (25 page)

But probably the one single thing that affected you the most is the fact that the radiation destroyed your salivary glands. You cannot eat a cookie or a pretzel or a piece of candy without having to have liquid on hand to wash down every swallow. Chances are you had never given a moment's thought to just how important saliva is to the swallowing of food, or of how big a role the enzymes in saliva contribute to the taste, chewing, and processing of food. You do now.

And in addition to all those fun things, you have developed a permanent forward tilt to your head, as though you were constantly looking down at your chest. You've found that when the stomach has had no solid food to process for seven months, it quite probably shrinks considerably, with the result that what you used to eat easily in one meal now provides enough food for four meals. To keep your weight steady, you concentrate on high-calorie foods, like chocolate covered donuts.

But…and I'm sure if you've managed to read this far you are delighted to hear there is a “but”…all these inconveniences and frustrations and bitching pale in light of the simple fact that you are still alive
to
bitch, and nothing else matters. Your glass is definitely still half full.

So, in short, I am not the Roger I used to be, and I miss him terribly. But I am still the Dorien I always was and always will be.

And I am dragging you through all this because…? Not because I want your company in the “Poor Roger” pity pool (it's really not as big as I make it sound), but simply so that you might step back and think a moment, as I do often now, of just how very, very lucky you are. One never knows how important things are until they are lost.

And one last note, if I may. The doctors believe my cancer was the result of second-hand smoke. I never smoked a cigarette in my life, though my parents and most of my friends were heavy smokers, and both my mother and uncle died of lung cancer. So if you smoke, as you take that first, deep, satisfying drag on your next cigarette, just take one small moment to think not only of what you are doing to yourself but what you might be doing, down the road, to someone you love. It ain't pretty, kid.

* * *

IN THE HOUSE OF CANCER

When I first went to the Mayo Clinic in Rochester, MN, in June of 2003 to begin treatment for my tongue cancer, I started a daily journal. I didn't really get that far into it...I was a bit less than peppy there for awhile. But going through what I had written, I came up with one entry, a little more than one week into my seven-week radiation therapy schedule, and I thought I'd share with you.

Wednesday, 11 June, 2003

Odd how we go through life automatically assuming that the way things were yesterday and the way things were the day before that and the year before that is the way things will always be. And when confronted by the reality that this is not a universal truth, it shocks us to the core.

I had no idea, when I arrived here, how profound the problem of eating would be. Eating is more than a chore. It is a struggle. Chewed food becomes a thick, tasteless paste (imagine a mouthful of crackers and peanut butter, but totally devoid of taste) which sticks to the roof and sides of the mouth, to the teeth, to the gums. Even accompanying each swallow with a drink of water is not satisfactory. Incomprehensible to those fortunate enough not to have experienced it.

I was just in the communal dining room [of Hope Lodge, run by the American Cancer Society, which provides free housing to cancer patients] trying to have dinner—cheesy potato soup, 240 calories, two slices of toast, water. Ate about half of the soup, one of the slices of toast. One of the other residents came in to join a group at a nearby table, and when someone asked how he was doing, proceeded to tell them. A long, gothic tale of removed esophagi and recreated stomach and tubes running thither and yon into and out of his body. Did I mention I did not finish dinner?

I've become obsessed with calories, since I do not dare lose any more weight (only 8 pounds, but that's not good) [I entered Mayo weighing 185; I left weighing 145. Cancer is a highly-effective weight-loss program, but I wouldn't recommend it]. Stopped at Dairy Queen, where one of the staples of my diet has become a hot fudge sundae with marshmallow topping. I asked if they had a nutritional chart, and they did. I see that I will be switching from the sundaes to malts and shakes…one of which has 900 calories.

Which, of course, opens the door to the possibility of diabetes when the bulk of one's calories come from sugars. Sigh. Life ain't easy, kid. Still, no matter how I bitch and moan, I am far better off than a great many people here.

At one of my appointments today, in the waiting room with his mother was a little boy about 7 years old. Totally bald, hooked to a portable machine which he kept on a chair next to him, and from which a tube ran under the waist of his shirt. Seven years old! He had the mildly lost expression of someone waiting for something, and I fear it was not Santa Claus.

* * *

A BOLOGNA SANDWICH

Shortly after I returned home from Mayo Clinic after my successful treatment for tongue cancer in 2003, I had the indescribably overpowering craving for a huge glass of orange juice, which lasted for days. I was at that point still taking all my nourishment through a stomach tube and was unable to swallow anything. I probably could have poured it into the stomach tube, but it was the
taste
I wanted.

And then when, months later, I was slowly able to resume eating and drink, I discovered that the acidity of that long-anticipated glass of orange juice burned my mouth.

Today, for some unexplained reason, I had an overpowering urge for a bologna sandwich…white bread, two thick slices of bologna, a slice of cheese, mayonnaise, a little catsup and mustard between the bologna slices, maybe a lettuce leaf. I fantasized about opening my mouth wide, taking a big bite, chewing, swallowing, then another big bite, chew, swallow until the sandwich is gone.

It has been six years now, and I still cannot believe that I will never again have a bologna sandwich…not a whole one, at any rate, and even then not even one single bite without having to take a sip of water to accompany the act of swallowing, to wash it down. And never with the ease and pleasure I associate with the thought of a bologna sandwich.

I know, I know, it sounds like I'm doing one of my Roger at the Pity Pool numbers. I never have been one to suffer in silence. But really, I'm not writing this to solicit sympathy. Sympathy is not called for in any event. I'm just trying to convey to everyone who takes such ordinary, simple actions for granted the incomprehensibility of suddenly being unable to do so.

I bitch a lot…a
lot
…about the things I have been deprived of, and how incredibly much I miss them. Yet I also realize how lucky I am compared to so very many people whose limitations are far greater than my own. Only people who have been deprived of things they have always taken for granted can fully appreciate what they no longer have or can do.

My “afflictions” are to a large extent limited to such simple things as swallowing and eating. I cannot imagine what so many other people endure without nearly so much complaint, and I know I should be ashamed of myself. I am truly in awe of what those countless numbers of people suffering fatal illness or severe physical limitations must go through every day.

But rightly or wrongly, I justify my eternal bitching in these blogs as being a cautionary tale of how quickly and how completely one's life can change, and how very important it is for each of us to realize it. I cannot urge you too strongly to take just a moment in the middle of any simple, un-thought-of daily action, like eating or running or turning one's head, and think of the myriads of tiny interactions of mind and body which are involved in and necessary to accomplish them. Of course you can't possibly stop to consciously think of every single action you perform; that's why they are for the most part totally automatic—so you don't have to. But to give an occasional moment to how utterly fascinating it is that we can do them at all can give a far greater appreciation to life.

And the next time you see a person with physical disabilities, resist the all-too-common reaction of pity, which too often is really just glorified condescension, and replace it with empathy by putting yourself, for just a moment, in their place.

* * *

OFF TO MAYO

Well, I am off to my 5-year-anniversary check-up at the Mayo Clinic…a seven-hour drive from Chicago. This will be…let's see…my 15th trip since being released from my cancer treatments in September of 2003. And since every single check-up has been fine, I have absolutely no reason to expect that this one will be any different. But that has not stopped me the past 14 times from worrying that this time there may be a problem. It's the old “other shoe” syndrome, and I guess it is human nature. Yet every time, having worried and fretted for a couple of days before the exam, when it comes out fine I wonder why I'd wasted all that time and energy for nothing. I do hope that will be my reaction this time as well.

I'm to have a PET scan…a 3-dimensional x-ray which can spot cancer cells anywhere in the body. The last time I had one, they only scanned my head and neck. I sincerely hope they will do a head-to-toe scan this time, but who knows?

Looking back from a point five years removed…actually, almost exactly five years and ten months since the night I bit my tongue in my sleep…the entire experience has a surreal quality. I still don't know, and never will, whether biting my tongue somehow triggered the cancer, or whether my body was trying to alert me to the fact that something was wrong. At any rate, my hesitation to act more aggressively or to insist my doctor do so, resulted in the cancer being a stage 4 when it was finally diagnosed. There is no stage 5. I was so incredibly, incredibly lucky to have things turn out as they did.

But I think part of the reason it did work out was that I never for one second entertained the thought that I might die. The treatments I underwent, the five-day-a-week, 20-minute (as I recall) radiation sessions, were simply the norm. Seven weeks of radiation, three “industrial strength” chemotherapy sessions (which I scarcely noticed in that I had absolutely no ill effects from them), having a stomach tube inserted when it became impossible for me to swallow, and subsequently subsisting entirely on liquid for seven months were all taken more or less in stride.

If I have any unhappiness with my treatment, it was that no one warned me of what was to follow. Had I known (and I probably should have, had I thought of it) that my jaws would all but atrophy closed from not opening them to chew, that my neck muscles would tighten to the point they felt (and still feel largely) like wood; that then cutting those muscles to remove my lymph glands would combine to inexorably pull my head forward and down to the point where I cannot tilt it back far enough to drain a glass or a can of pop, or that I would be unable to turn my head more than 15 degrees in either direction, I think there were steps that I could have and should have to lessen the effects of the damage. I'd have worked my mouth, opening widely, sticking my tongue out, turning my head constantly back and forth, and perhaps getting a back-neck brace to counter the forward-and-downward pull.

I am not the person I was, and I miss me terribly. I cannot do so much I once took so much for granted, or enjoy a bag of popcorn or a good steak, or have my evening Manhattan (alcohol burns)…well, so very many things. And I know this sounds either like a dive from the high tower into the Pity Pool, or an embarrassing bid for sympathy. Please believe me when I say it is neither. It is merely life being life, and the fact remains…the only fact that matters…is that I am alive and infinitely grateful for that fact. And my purpose in putting all this out in front of you is simply to encourage you to give serious thought to, and to really, fully appreciate, everything you have.

As they say, life isn't always easy, but it's better than the alternative.

* * *

AND THUS ARE THE DAYS OF OUR LIVES

“When is the last time you had pneumonia?” the speech therapist asked after I had completed a video-x-ray test of my swallowing.

“Uh...like never,” I replied.

“That's amazing,” she said. “You are constantly aspirating liquid when you swallow. You're what is known as a silent aspirator. Luckily, you have a strong cough reflex when you do cough.”

Well, that was encouraging, I thought. I'd gone to see her because I had a test scheduled while I was at Mayo on my recent visit, but the person who was going to perform the test had a family emergency and had to cancel, so I arranged to have the test done at my local hospital.

And the upshot of all this? The solution? The cure? Well, according to the therapist, I am to mix a tasteless thickening agent into everything…that's
everything
…I drink: coffee, milk, water, soda, soup. Not only that, but I was instructed to drink everything using a teaspoon, not a cup or glass. 1 teaspoon of thickened liquid. Swallow. Cough. 1 teaspoon of thickened liquid. Swallow. Cough.

I can see myself going out for coffee, carrying my canister of thickener, leaving my cup on the counter and grabbing a teaspoon. Measure out the thickener, stir frantically to be sure it dissolves. 1 teaspoon of thickened coffee. Swallow. Cough. 1 teaspoon of thickened coffee. Swallow. Cough. The fact that it will take me three hours to consume one cup of coffee won't really matter, because after five minutes of sip-swallow-cough the entire place will have cleared off, leaving me sitting alone at the table being glared at by any of the staff who were unable to leave with the others.

And no ice cream which is thick going into the mouth but melts into a very thin liquid which easily flows down the windpipe.

Doesn't all this seem like tons of jolly good fun? No, it does not.

But I will do my best, mainly because while I have never had pneumonia, I do not want to
get
pneumonia. So I will compromise. I will put the thickener in everything I drink, but to hell with the teaspoon. I'll just take very small sips. As for the coughing after every single swallow, I won't count on it only because my eating habits already test the mettle and the patience of my friends. To put them through an endless coughing binge would be simply too much.