Treatment Options

The funny thing about getting healthy is how most of it isn't funny at all. In fact a good deal of it is downright unpleasant. The part that no one really warns you about is how treatment and follow-up care is actually harder to deal with than the diagnosis, the surgery or the emotional trauma. I'm sure it varies for everyone but the one constant is the ever present nature of treatment. It doesn't matter if you're prescribed radiation or chemotherapy or a combination of the two; the one fundamental truth of the process is that it will be a lengthy and on-going ordeal and the effects of fatigue and pain are cumulative. Doctors, nurses, therapists and other specialists do their best to warn you. They try to explain that everything will feel fine at first and then it will gradually become more and more difficult. But most do so with the sincerity and credibility that I would have trying to talk someone through landing a jumbo jet. You see, I've never flown a plane so my advice wouldn't carry much weight.

So you can prepare for the inevitable and you can remind yourself of why you must endure the process, but in the end there will be days when you question everything.

For me, the questions began to fly about mid-way through my radiation treatment. For those who are unfamiliar with the process, radiation has the effect of slowly killing cells in a prescribed area. The drawback is that as many healthy cells die in the process as diseased cells but the procedure is based upon the theory that the good cells will regenerate whereas the sick cells will not. After undergoing 13 of the 33 treatments I was prescribed, I called the hospital and told them I would not be coming back for treatment number 14. I said I was having second thoughts about continuing the process because the side effects were taking a heavy toll and I was concerned about the long-term implications of what we were doing. My concern was prompted by a shockingly sudden loss of ability to taste anything. It was as though my tongue had simply been removed and I couldn't enjoy the simple pleasure of eating. That concern turned into outright fear when the lack of sensation was replaced by a foul and rotten taste that made it virtually impossible to eat. In addition to that, my skin was becoming severely and painfully irritated, I had no fewer than a dozen canker sores and my sense of smell was being affected. The radiation to my head and neck was damaging nerves in and around my mouth and I came to the conclusion that I wasn't prepared to live if every single meal was going to feel like torture. I began researching the side effects of head and neck radiation online and discovered that I would face a lifetime of mouth ulcers, increased likelihood of cavities, gum damage, tooth loss and vocal cord damage. I was keenly aware of the rarity and seriousness of my condition and that I had to do everything in my power to ensure the cancer was gone. But at what price? At what point do you exchange living for existing? How far into that compromise was I prepared to reach?

So once again, I turned to the realm of social media for guidance. I figured I had shared so much of myself with my friends via our online relationship that maybe it was time I asked them to reciprocate.

And boy did they.

So today I share with you not my own blog entry, but rather what my friends shared with me. Sympathetic, cautious and hypothetical as were most of the responses, those who wrote to me that day will never understand the depth of gratitude I have for their thoughts. I asked an impossible question and what I got in return was some of the most sound advice I could have hoped for.

September 21, 2009:

K.S. wrote "Would stopping radiation now really give it a better chance of it coming back, or would it put your life at greater risk? This is YOUR tour on this Earth. I really think you are precious and I know that others who love you feel the same. We want you in our lives for as long as possible. You may not be able to smell the air after a rainfall, but you would still be able to feel the air on your skin and listen to the birds singing and roll down the grassy hill and see the world around you."

O.W. wrote "At the risk of giving incredibly bad advice, I would knock it on the head and hope for the best."

J.H. wrote "Pretty tough question to answer my friend. I'm not sure that anyone really knows what they would do until faced with it. I will say that whatever you decide will be right for you and I will support your decision. I can say that seeing a bit of what it is like just from being around you that not tasting things is a lot worse than many people might think. In the end you are in charge of you. "

A.S. wrote "My personal opinion is - you should ask yourself how badly you want to be here and if the answer is that you want to be around then you should follow the specialist's advice on how to do just that."

S.G. wrote "I don't think there is a wrong choice either way. It's just a tough choice. A doctor's job is to keep you alive as long as possible. Your job is to choose how you want to live. Not many here are willing to offer what they would do for fear of it changing your mind with possible negative results. People make smart choices based on facts. You have none to base this on other than success percentage, and even that's not a guarantee. It's like asking what day will I die on and what will kill me? Booze, smokes, red meat a bus or heart attack. Who knows. We can't choose the way we die, only how we live. How do you want to live?"

G.E. wrote "The world has a plethora of possibilities that go beyond taste and smell. There are wonderful sights left to see. There are unbelievable sounds to hear. There are friendships and family.
I don't know what I would do. But I know that, despite the losses, there is a worse fate. In truth, it is you who must overcome those loses and learn to get by without them if they remain permanent. The question really is about your willingness to take on that fight. And you, sir, are a fighter. Not an easy choice. Be well Greg, I'll support whatever decision you make."

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There were many, many more entries encouraging continued radiation and advising against it but all promised to support whatever decision I made in the end. I chose these six messages because they resonated with me the most. Some in their simplicity and some in their underlying wisdom. I opted to return to treatment the following day and finish the course of 33 radiation treatments as had been prescribed because in the end there are no guarantees for anything in life. The loss of taste, the pain and the long-term side-effects might all have continued with or without the treatment but the one certainty I had was that my chances of getting sick again would be greater. My friends gave back to me that which I had lost along the way; my perspective. They reminded me of the scope of my problem and the gravity of the choices to be made. Mostly they reminded me that we are all fragile, sometimes indecisive and always vulnerable but we are never alone. Whether in grief or in support, never be afraid to reach out with your hand, you might be surprised by who reaches back.