What’s left after my cure for nasopharyngeal cancer

I was “cured” from my stage 4 non-small cell Nasopharyngeal carcinoma after 8 months of living hell treatments in 2012. After the forth dose of radiation it was really difficult to swallow and all the other happy side effects. Fast forward to 2021, I was losing my voice, my speech was very raspy and was hard to catch my breath. It was hard to swallow almost any foods but soup and hot cereals, always involving a lot of choking. Had to have all my teeth removed because even with proper care they were rotting from the roots down (and most were capped and crowned already….gotta love cavities at every visit) so, after 30 dives in a hyperbaric tube they were surgically removed, leaving a hole in my upper gum line leading to my right nasal passage (yay!) so that needed surgically repaired. While all this happy fun was happening I was losing weight, lots of it. I had lost 50# while going through cancer treatment and never was able to put it back on so losing more was bad. I knew something was going horribly wrong because at work I was always easily exhausted, couldn’t stay hydrated because I’d always choke like hell drinking it. One day I was walking to my truck in the morning before work and I collapsed in the parking lot. I knew I had to get looked at. Found out I had been working with walking pneumonia for the last few weeks and I had to go on disability from work. After the pneumonia was taken care of, had a peg tube reinserted so I could get some nutrition and had a speech therapist look at my throat scan and my epiglottis is non functional and my vocal cords are fried enough that they don’t relax enough for proper breathing or speaking. Had throat dilation done, it lasted a whopping 5 minutes….when I asked the ENT specialist at the follow up appointment if there was something he could do he said “live your best life”.

Sorry for the long drawn out story, I’m just looking for some kind of hope to stop this decline I’m on. I’ve had walking pneumonia four times now, have called every top tier hospital in the U.S. looking for help and I get the same “sorry” every time.