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FRED'S STORY

Max was a very dear friend whom I try to remember the way he was in the early spring of 1998...51 years old, and glowing with the joy of life. He was a computer guru, an accomplished private pilot, and a seasoned world traveler with a lovely wife and two highly accomplished children. He had a great sense of humor and an enormous zest for living.

Fifteen years earlier Max had undergone radiation for a tumor in his throat. The treatment had been effective and if he ever gave it another thought, no one could have guessed it. He was home free...or so it seemed.

In late spring of 1998, Max was diagnosed with cancer of the tongue. The doctors said that if they excised his tongue, he might have a good chance for survival. So in early June, Max underwent the surgery, and about ten days later, he came home to start his new life.

I had been one of the people who encouraged Max to undergo the surgery...after all, there's more to life than talking. Besides, given his ability to earn a good income with his brain and the availability of computer voice synthesizers, there was a great deal of living he could still do. And he had an indomitable spirit.

Max hadn't wanted any visitors in the hospital, so I called each day to speak with his wife about his progress. When he came home, I wanted to go right over to see him, but he wasn't yet ready for company. I continued to call each day, and as we got into the third week after surgery, I told his wife to inform him that I was coming whether he liked it or not, and that they had the option of just not answering the door.

Well, they did answer the door, and I did get to see Max...and it was one of the most traumatic experiences of my life. The loss of his tongue, I learned, involved a great deal more than we had imagined. First, there was the permanent trache tube, to insure that he could breathe, and the insert had to be removed and cleaned each day. Then, there was the direct line into his intestine, through which Max had to feed himself liquid nutrients for 12 hours each day. And then, the worst problem by far...his inability to control salivation.

As I sat with my friend, trying to cheer him with computer technology talk, it took all of my strength to hide my upset with the sight of the tube into his abdomen and the huge bubbles of saliva he was drooling into his bucket. I know it was much harder on him than on me, but after starting the drive home, I only got about a mile before having to pull over to the side of the road and cry. It couldn't get any worse than this...or so I thought.

Although Max's wife urged him to let me visit often, he only allowed me to come every other week. The next visit I was fully prepared, and managed to maintain a cheerful demeanor. When I asked whether he was making progress with his swallowing exercises, he nodded a half-hearted affirmative, but it seemed that perhaps there was even more bothering him than I knew about...or perhaps it was only my imagination. Unfortunately, it wasn't.

In the subsequent weeks they found that Max was developing another, highly aggressive tumor in his throat. For whatever reason, further radiation was not considered an option. The tumor grew rapidly. They treated the physical pain, but that was the smallest part of Max's problem. Imagine, if you can, spending months sitting up in a chair, unable to lie down to sleep or rest, managing a cat-nap now and then, waking to connect another bottle of nutrients to your feeding tube, drooling huge globules into your bucket, while you waited patiently for the tumor in your throat to grow big enough to strangle you. It was hell on earth!

Max had about four months of that nightmare which some people insist upon calling "life." When death finally claimed him, my radiant 6'1", 185-pound friend was a pitiful 80-pound scarecrow.

The morning after delivering the eulogy at Max's funeral I joined the right-to-die movement. Ever since, I have devoted myself to the battle for legislation that will provide terminally ill patients with the means to avoid such horrific suffering.

-Fred

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