“A young healthy person diagnosed at age 50 will be cured, but will need to live with the side effects for four decades,” Anthony C. Nichols, MD, of London Health Science Center, London, Ontario
So What Is The Prize?
Very simply, the prize is YOU! More specifically, the Prize is YOU getting to be YOU again on the other side of getting rid of your HPV oropharyngeal cancer.
TO REPEAT – THE PRIZE IS YOU GETTING TO BE YOU AGAIN. THAT’S THE “PRIZE”.
When I was first diagnosed in late 2014, I was presented with a treatment regimen that was euphemistically described as the “Standard of Care”.
The Standard of Care included:
1. Surgically removing the back half of my tongue then filling the resultant hole with most of the skin from the inside of my forearm. They would then remove a great deal of skin from my buttocks and sew it onto my arm (they never addressed what they were going to do about the missing skin on my buttocks?),
3. standard IMRT radiation treatment depending on the margins of the removed tumor.
The likely result (long-term side effects) for me with Standard of Care treatment looked like this:
– the permanent and complete, or near-complete, elimination of my salivary glands. In other words, a dry mouth and resultant chronic dental problems for the balance of my life.
– the permanent and complete, or near-complete, elimination of my taste buds. In other words, I would never taste food again.
– some degree of progressive swallow dysfunction, known as progressive dysphasia. Progressive swallow dysfunction gets worse with time and often results in chronic pneumonia. As my swallow dysfunction got worse, it was likely that I would start aspirating food and liquids into my lungs thus causing chronic pneumonia.
– some degree of speech impairment was also likely with a some chance of severe impairment. In other words, the possible end of my career and the end of conversations with friends that I so dearly love.
It became immediately clear to me that Standard of Care meant the end of my life as I knew it. In other words, I would never get to be me again on the other side of treatment.
I happen to enjoy “being me” and I enjoy the life that I lead – a great deal! Therefore, I did not jump at the chance to receive Standard of Care treatment.
Instead, I did voluminous amounts of research to find legitimate alternative therapies. This research led me to proton beam therapy at M.D. Anderson in Houston, Texas. I discovered that most, if not all, the long-term side effects listed above could be avoided. The long-term side effects for the proton beam therapy would likely include minimal salivary gland damage, minimal or no taste function loss, no long-term swallow dysfunction and no speech impairment.
I realized that I could cure my cancer AND get the chance to be me again. In other words, I could not just be a survivor, I could be a “thriver”. I resolved that no matter how expensive, scary, painful, unpleasant, boring or horrible treatment turned out to be – it did not matter because I had a shot at being me again on the other side of it all. In other word, I had a shot at the “Prize”. This “eyes on the Prize” became my mantra. When I was battling my insurance company, figuring out other money issues, and no matter how much I suffered during treatment (and I did suffer a great deal), I simply kept repeating to myself “eyes on the Prize”.
Make the Prize your source of motivation, your goal and your destination. Eyes on the Prize – no matter what advice you get about treatment options, no matter what obstacles appear in your journey thru your cancer and no matter how horrible you feel during treatment. You can be you again!
Question: What is the Prize?
Answer: YOU getting to be YOU again! You being a thriver!