- CASE FILE
After several surgeries and radiation from Stage 4 Tongue Cancer I now have necrosis, scar tissue, and much more.
ABOUT THIS CASE FILE
I was diagnosed Seven years ago with Stage 4 tongue cancer. After at least 15 surgeries, I had had 3/4 of my tongue removed and rebuilt, 3 feeding tubes, a trach and radiation and losing 140lbs I am still fighting to get back to somewhat of a normal life. As we all know radiation is the gift that keeps on giving...Because of some extractions I had to have a few years ago I have developed Osteoradionecrosis of the jaw and have been told my jaw bone will continue to die and cause more damage. I have holes in my mouth that are hard to keep clean and often pull out pieces of bone. Because of the necrosis I have multiple infections including osteomyelitis. I am in constant pain and several days I wake up and cannot open my mouth. I also have swelling at times. I am told it will all just gt worse but that is part of it... I can't accept that.. there has to be more I can do. I hate taking any pain meds, and staying in bed all day is not an option.
I also choke very easily and have to have someone with me at all times if I eat. I even have an alarm in case I do choke. My 14yo old daughter and my husband have had to learn the heimlich to help me in emergencies. I often times have food go up my nose...it is painful. No one can give me more techniques to help these things. I have tried swallowing exercises which have helped me eat better, but again no one seems to be able to give me hope that I can make it better.
Because of the surgery to my neck (They basically cut my neck from ear to ear to remove lymph nodes) I have lots of scar tissue, numbness and nerve pain. I still have to go thru occupational therapy for my shoulder since I can't lift it very far, and I have very little wrist and hand strength. I also have lots of numbness and nerve damage in my neck, jaw and chin. The worst part is when the nerves start "waking up" and the nerve pain is horrible. Is there anything that might help?
I have scar tissue from the feeding tubes on my stomach. I have to be very careful what and how much I eat, because the slightest pressure causes a lot of pain. Because of all the weight loss I have a lot of loose skin, but especially my stomach and my skin folds over my belly button. I get infections all the time in my belly button and under my bra line... I can't even swim with my daughter and husband because it makes the infection much worse. Is there anything I can put on my belly button to help?
I have dry mouth and clogged saliva glands. Fortunately something that helps is sucking on hard candy when I can, but it is still an issue. It just brings the tooth decay faster. I already have to have more teeth removed and am told my teeth will continue to decay and have to be removed...great..I am already missing 7 teeth they pulled before my surgery that were fine...imagine how this impact chewing.. try to chew without using your tongue and having no teeth. I cannot use biotene anymore because of the mint, does anyone have any other tricks that may work?
Because of all the teeth I am missing (and add not having most of my tongue) it is very hard to eat anything more than a soft diet most of time.. Smoothies are my friend, but they get old after a while and sometimes upset my stomach.
Add to all this that because of the radiation my thyroid is dying and my levels go all over the map. My levels are always up or down and my meds have to be adjusted.
I see probably 7 different doctors for everything including a head and neck surgeon, dental oncologist, primary care, gastro, cardiologist for dizziness, radiation oncologist, etc. No one seems to really be able to give me clear answers or even hope. I am frustrated and tired of not knowing what I can do to help myself. I know it is a lot, and there is more, but I really hate whining and being poor me, but any help or information would be greatly appreciated. Thank you for reading my story and any information or help.