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| Date Entered at Shared Experience: 05/20/2002 |
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MOUTH |
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In January, 2000, I was diagnosed with a squamous cell lump in my left cheek. This was probably caused by me chewing on the inside of my mouth while I was sleeping. Some people grind their teeth - I chewed the inside of my mouth. I don't know how many doctors asked me if I had ever chewed tobacco, which I never did. I did smoke for a long time, but gave it up ten years ago when I had coronary artery triple bypass surgery at 45 years of age. (Bad genes.) Three weeks after diagnosis, I had a 7-hour surgery which revealed that the cancer had spread to the lymph nodes in my neck. During the surgery, a graft of skin was taken from my thigh and placed inside my mouth, because they had to take out a lot of tissue. This hospital stay was 3 days. About a month after the surgery, I had 31 sessions of radiation to the cheek and neck areas. During the course of my radiation, I dehydrated, as eating and drinking were close to impossible - the radiation caused scar tissue to form inside my esophagus, and it was closing up. It was to the point that I could not swallow my own saliva. I was not very aware or concerned of my gradual decline, as I was on morphine for my pain. My hospital stay lasted six days. I was rehydrated with IV fluids, and received a PEG, which is a feeding tube which goes directly into the stomach from the outside - it does not go down the nose or throat. I fed myself with liquids - Ensure liquid in cans was my staple diet. I had the tube for 11 months and 1 week. I have thus far received 18 stretchings of my esophagus, to push back the scar tissue that formed inside the esophagus. When I had my first stretching, the doctor could not get a normal scope down my throat. He had to use a pediatric scope. For all of these procedures, I was asleep - they call it conscious sedation. I get my next stretching on May 29, and then after that, I should be getting just maintenance stretchings - to make sure the esophagus stays at a certain diameter. This is necessary, because scar tissue is very unstable, and keeps wanting to close up.
I still have residual side effects from the surgery and radiation: extremly dry mouth and tongue due to lack of saliva (I call it Velcro mouth, because everything sticks together; decreased mouth opening due to stiff jaw joint - I have a special apparatus to exercise my jaw with; sensitivity in the mouth and tongue; loss of taste; loss of smell; trouble swallowing; numbness in my left collarbone area, left neck area, left ear and left side of scalp. Trying to wear my pierced earrings at first was really tricky.
There are products on the market which help with the dry mouth. I'd be happy to offer names of products to anyone who needs it. Anyone having radiation to the mouth area must also get extra flouride treatments from their dentist.
The thing I miss most is the lack of saliva. Because of this, I cannot eat many of the foods I used to enjoy. I look completely normal; my surgeon is also a plastic surgeon and a dentist. He did a great job. The radiation did a lot of damage, but my surgeon recommended it, and I'm glad I listened to him. |
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None. |
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31 sessions of radiation. |
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Gradually getting better. After two years and 5 months, I am cancer-free. |
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Magazines, news articles. |
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Your cancer is a part of your life which must be addressed. But it is not
your whole life. |
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