Hello and looking for advice

Hello Everyone. I was diagnosed with Stage 2 nasopharyngeal cancer on March 21, 2011. I am a nurse practitioner who worked in geriatrics. I'm 50. I'm now still on short-term disability. The journey has been painful, humbling and eye-opening.

I had a PEG tube placed. It is a button style. If I could do it over, I would have had the regular style tube placed as this small "button" presents difficulties. I have to place and remove the tube itself each time I "feed".

I completed 33 IMRT treatments to my nasopharyngeal area down to the clavicle level on May 25, so 2 weeks out from rad. I did sustain the equivalent of 2nd degree burns to my right neck, the more heavily irradiated side. It has healed and left me with darker skin, that seems to be peeling. The rad/onc doc told me he tried to spare much of my left parotid and some of my inner right parotid. Being Asian, he said I seemed to have genetically rather large parotids and he hoped this would bode well for saliva return at some point.

Looking back, I think I really erred by giving up oral food intake about week 4 into the rad chemo treatments. I just could not bring myself to swallow food that had no taste and that had to go down a really sore throat.

My throat still feels "hot" when I swallow my thick saliva. But, it is much improved when compared to the last week of radiation. It felt like broken glass at that time. Swallowing water is OK. I did make a shake of lactose free ice cream and peach slices the other day to test the waters and was able to struggle through 8 ounces of that. But, I thought, I can't survive on carbs! I tried a tsp of honey yesterday and gagged and almost threw up my tube feeding. That brought back too many nightmares of endless gagging while going through the 2nd and 3rd chemo weeks.

I am asking for a link or any advice or reference to any previous discussions on how to transition from total feeding tube dependence (me on Jevity 1.2) to oral intake. My saliva is still poor. And, I have virtually no taste, although, I can identify foods once they are in my mouth, perhaps through smell that has remained intact. I do not think I will be able to return to work unless I can get off some of these 4 a day tube feedings that take an hour each feeding.

You might think me crazy, but I think I've watched and DVR'd every Food and Cooking show while I was going through treatment. Friends told me I was crazy and sadistic. I kept dreaming of the foods I want to cook and eat once I am able to. At this point, I am worried. I hope and I pray I can eat once again.

Last note, I am going through Acupuncture to try to help with saliva and taste. I've only had one treatment on Tuesday, so far for this specific goal. No results yet.

I would appreciate all and any advice on this matter.

Thanks,

Darren