My story is simple and small. In December 1998 I was diagnosed with an upper respiratory infection and treated with antibiotics for about six weeks. I was having difficulty breathing through my nose. The symptoms lasted about six weeks and became worse. I requested that my Primary Care Physician refer me to an Ear Nose and Throat physician. The ENT examined me. Immediately he was extremely concerned to find a tumor behind my nose. I was scheduled for a biopsy in about three days. I was diagnosed with Hodgkin’s Lymphoma. Within days many specialists saw me including a dentist to determine what my course of treatment would be and if I would be able to tolerate the treatment. Sloan-Kettering hospital in New York confirmed all the findings and prescribed chemo and radiation. An oncologist in Southampton, N.Y. for chemo and Brookhaven National Laboratory on Long Island for radiation treated me. All of this transpired within about ten days.
Of interest, all of the physicians agreed this was very unusual because I was not within the age group for this cancer; my tumor was behind my nose and this also was not a typical location for Hodgkin’s Lymphoma. Sloan-Kettering hospital, which sees thousands of patients every year from all over the world, said they had not seen this situation as well.
My treatment was a curative treatment. This meant that a very heavy aggressive treatment would be used. After my treatment I had no saliva and no taste for two years. I had to have bottled water near me 24/7. All food was like chewing on tasteless bark or cardboard. Some foods such as chocolate and coffee were vile to the taste. I was really depressed and thought my life was slowly ending. Many physical parts of my body were adversely affected. I am now a diabetic and have had to replace many of my teeth. At first I was loosing my short-term memory and long-term memory. It was scary not being able to remember what I did from one day to the next and sometimes I did not know where I was and did not know how to get back home. This was due to my treatments. I also have other illnesses that I continue to deal with. My memory is normal now. In consulting an Endocrinologist he told me that my thyroid was destroyed with the radiation therapy. I now take medication to replace my thyroidal hormones. The thyroid controls memory.
Yes cancer is awful. As time goes by I realize nothing can quite be the same. It takes a long time to realize you can move on. It takes along time to understand how to deal with all the unknowns of cancer. It takes a long time to re-tool your-self to feel useful again.
Today I have proven to myself that I can do many of the same things I used to do. I just do them a little differently. I work in a nursing home as the Culinary Director. I can now taste the food and continue to hone my culinary skills. I am now giving back to others and am feeling so confident that I have started my own business as a wedding coordinator.
Through my entire ordeal my wife Karen has been incredible! She has been there for me every step of the way. She was at my side during every chemo treatment and every radiation treatment. She has been that solid rock for me to lean on. Without her support I can only think -- would I be writing this to you today?
Ed
Ed's story is also available on our Pincbubble web site.
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