I am now five months post treatment (U of Chicago protocol with concurrent chemo and radiation followed by left side modified radical neck dissection [does anyone else here hate the word dissection--I do feel like a science experiment at times] and I am a very experienced gourmet cook who used to have a really sensitive palate. Now I can hardly taste at all, my mouth is still actively generating sores, my tongue has what my oncologist laughingly calls a divot and I have at least two separate mouth infections, besides thrush, which just adds color to the mix.

Eating has become an obsession. Although I am still largely PEG dependent, I experiment every day. The best friend I have is heavy whipping cream (which I buy by the half gallon at Costco). The heavy mouth feel of cream has been a comfort even during treatment. For months, the only real taste I had was very strong coffee with a huge amount of whipped cream. I have since added sugar, mostly for calories. This summer I progressed to Starbucks Dulce de Leche Frappiccino. From there to creamed soups, very smooth ones. I bought a new blender and a foodmill with a fine mesh strainer. A god send. One of my most recent discoveries is silken tofu. They sell it in all kinds of flavors. I just recently tasted almond for the first time, mixed with very ripe pears and some more cream. Not bad at all.

In terms of eggs, I cannot tolerate the texture of scrambled eggs, but eggs over easy (really one egg) with lots of butter on cream of wheat made with more whipping cream and sprinkled with a little finely grated mild cheese is my current dinner of choice. I have also tried blended home made creamed spinach with fish. It went down well.

As for pasta, I just choke, so that doesn't work yet at all. I can't imagine being able to eat a French Dip sandwich, no matter how drippy, but I was drooling (well...metaphorically drooling, since I have almost no spit left) at the thought.

Of course everything has to be consumed in very tiny bites. My kids bought me a colorful array of Gerber baby spoons which are nice because you cannot get too much stuff on them and they are padded. Everything also has to be consumed with water.

There are a few other things that have helped me, at least [and of course everyone here is in the same boat, but a different part. So what works like a charm for one is torture for somebody else.] Cream of potato soup gives me the illusion of eating something a little more sophisticated ,but plain old mashed potatoes and gravy are way too sticky for me. To the potato soup {very smooth and very creamy}, you can add all kinds of things like carrots, mushrooms, spinach, asparagus, squash, turkey, chicken. Just make sure it is pureed to a smooth texture. Some of the flavor comes through, as do the calories and some of the vitamins. I have bumped up the protein with silken tofu, with finely ground wheat germ and very smooth nut butters. Almond diluted in cream soup works extremely well.

This disease may not have captured the popular attention like breast cancer or lung cancer, but it certainly gives "pain in the neck" a whole new dimension of meaning. I am a medical professional and I cannot think of another thing except perhaps for diabetes, which so radically and permanently changes your life and that is assuming that things go really well.

What I have learned since diagnosis in January, is to treat the whole thing like a job which requires infinite patience and a tremendous sense of humor. You have to keep trying to eat, to chew to swallow, to add new things. Remember, if you don't use it, you lose it. Be sure to have a love/hate relationship with the PEG. The idea is to live without it, not with it.

I have been greatly helped by the experience and wisdom of people willing to share all kinds of information on this forum. I greatly appreciate the opportunity to share whatever I have learned in turn.

Bonnie Glen