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A Newfound Meaning to Life

Byline: Steve Clark from Camp Verde, AZ

In the years since I was first diagnosed with head and neck cancer I have come to one realization. There is no such thing as a “typical” case. So many delicate and complex systems pass through that part of the anatomy that every survivor tells a different story. This is mine. Glean from it what you will. I hope that it may be of help to someone.

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I had a tumor at the base of my tongue with metastatic disease on the left lymph nodes. By the time all the surgery, radiation and chemo were done, I was left with severe motor and sensory deficits on the left side of my throat. I am tube fed and unable to swallow any liquids without some degree of penetration (when food, liquid, or saliva starts to enter the “wrong pipe”), although I do allow myself the luxury of a couple of Ensures every evening which I have learned to drink somewhat successfully. By that I mean I only choke about half the time. But for me, the pleasure of being able to take something by mouth far outweighs the risks.

I also have speech deficits due to left vocal fold paralysis and the inability to elevate my soft palate. My speech is hypernasal and breathy. I used to be in love with the sound of my own voice (in other words quite full of myself), but not so much now. I used to sing and play the clarinet but that’s behind me as well.

Being tube fed makes travel a little problematic, but I’ve found many work-arounds that make domestic travel quite doable. I usually ship food ahead and take Ensures on the plane to get me through the trip. I’m determined to go to Europe and I have some contacts with Nestlé that may make that a reality.

I am blessed with a wonderful wife who absolutely refuses to stop looking for solutions to my problems. In fact, it was she who got me involved with NFOSD. Through her efforts I’ve been seen by some of the best ENTs and speech/language pathologists in the country. We haven’t achieved any significant improvements to date, but as I said she is tireless in her quest. If there is therapy or procedure out there, I have no doubt that we’ll find it.

But far more important than these dry medical details is the quality of my life. In the past, whenever I saw someone forced to live with handicaps or unpleasant medical conditions, I wondered if I would have what it took to live reasonably happy. When I got my diagnosis, my inward reaction was quite unexpected. Rather than feeling that my life was coming to an end, I had a strong sense that I was going on a life journey that would have joys as well as challenges. And as I encountered trials along the way, I found that I could always summon the inner resources to persevere. If I had known in the beginning everything I would ultimately have to go through I might have felt beaten before I even started. But sometimes ignorance really is bliss.

Writing this story is central to my attitude as well. Finding meaning in the course of my life lends it value that it would otherwise not have. If I thought that my journey had been for no good purpose it might have been overwhelming. But I have always held the belief that someday, in some way my story would lend hope and encouragement to someone.