Friday, November 11, 2011
Getting Personal
Never having seriously considered my own mortality the words "fibro sarcoma" spoken by the doctor rocked my world. All I actually heard was "sarcoma". I knew it was a form of cancer. I am dying. But then, everyone is dying. Life can be prolonged through medical procedures but eventually we all die. So, the question is, do we die on our terms or someone Else's.
Medical professionals will line up around the block willing to tell you what you must do, as long as they are getting paid. The surgeon tells you that the tumor must be removed. Of course he gets paid to remove tumors. The radiation oncologist will tell you that you must have radiation therapy. He gets paid for providing that therapy. Everyone in the medical field has an opinion, all of which they will share with you, for a fee.
So, where do you go for advise? Family and friends, while great, offer little in the way of actual information. Everyone has a cancer story, whether it be themselves or someone they know. There are endless anecdotes about Aunt Marge and Uncle Willie who either did everything the doctors told them to or ignored all medical advise. The one thing that all the Aunt Marges and Uncle Willies have in common is that they all died, or will die.
I turned to the internet and began reading. Amazingly, there is a lot more information on soft tissue fibro sarcoma as it pertains to cats and dogs than there is about the disease in humans. No large studies have been done on humans with this form of cancer. The cancer help sites offer basic cancer information but very little about the actual disease. Mostly they link to support groups. I have no desire to hear others whine about themselves, I am doing enough whining of my own.
A biopsy of the tumor was "inconclusive". The biopsy was studied by three different pathologists, one located at Johns Hopkins University. The phrase the surgeon used was "it is probably not malignant". After the tumor was removed it was sent to three pathologists. Two of the three said benign. The third said fibro sarcoma. Terrific, even the experts disagree.
Now, every expert tells me that I need 30 radiation treatments. Five days a week for six weeks. When asked how many cases of fibro sarcoma they have dealt with every expert says "none". They have dealt with various sarcomas, just not this one. From my reading I have discovered that fibro sarcoma is thought to be a result of previous radiation therapy for other cancers. Wait, you guys want to treat a disease with the therapy that is thought to cause the disease? Perhaps there is something here that I am incapable of understanding but the logic escapes me.
After more reading I found this statement, "The use of radiation therapy following the removal of a fibro sarcoma is recommended but has not been proven to be of benefit as it relates to survival rates". And this, "the 5 year survival rate of those diagnosed with fibro sarcoma is 60%". 6 out of 10 people with this disease lived longer than 5 years after diagnosis. What is not said is how many died as a result of the disease.
Decision time. This may be the most selfish thing that I have ever done. I will not have radiation therapy. Once this huge hole in my back is healed I will return to living. I will return to work. I will once more ride my motorcycle like an idiot. I will fish and hunt and play golf, fibro sarcoma and medical experts be damned.
Regardless of when I die, be it tomorrow, next week, next month, next year or decades from now, it will not be fibro sarcoma that killed me, it will be living.
