Hello friends,
Ed was kind enough to send me a private message inquiring about my situation and after reading this thread again, I felt that I should respond here as well. First, after 12 years, I am still one of the lucky ones. I feel good and I still travel, work and play golf. I can still eat (ate steak in NYC last week as well as a lobster roll at a street food fair and pizza). I lost 10 pounds when I became ill last spring and cannot seem to regain it, but I look normal, just thinner than I used to be. The HBO treatments caused my eyesight to become terrible due to ripening of my cataracts. The good news: I got cataract surgery and have the best distance vision that I have had since childhood, and Medicare paid for it.
I still have exposed bone where my molar came out but the tissue around it is healthy. I still tend to aspirate thin liquids but mostly only drink water anyway.
The speech paths at MDACC want me to enroll in swallow boot camp but so far I have not done so. Eating has gotten a little more difficult for me but I can still do it if I have water to wash it down. Of course washing food down with water can lead to more aspiration. They recommended food thickener to be added to liquids. I do use it when I drink Boost but don't like it in water.
The dental onc. and H&N surgeon are doing a wait and see on my jaw, not wanting to subject me to a mandiblulectomy unless really necessary. So, bottom line: I am a little skinny, and far from perfect, but I can still eat out with others, etc. without it being obvious that I have difficulties. I am happy to be alive, feeling well and able to work and play, and to eat.
Ed, you have had it really rough. No need to feel badly for me who hasn't really had it so bad.
Good luck to all and thank you for your interest.