Uncle Sally :  old white-bread ex-hippie come to Earth reluctantly, ersatz
Poet, who never smoked, never drank : Squamous Cell Carcinoma of the tongue,
T2~3,N1 diagnosed December 2006. Treatment :  Chemo :  two in-hospital
four-day bondage and discipline sessions of constant drip of "Satan's Piss"
(5-FU, CISPlatin, and Taxotere). Radiation : 7000 rads, including electron
beam through lymph nodes : IMRT as well as plain old Ming the Evil Emperor's
death-rays.

Hi Friends,

I've been out of touch for a while, and just wanted to say hello.

It seems amazing that it was only a year ago that I was in the middle of
radiation and, post-chemo, was hairless, as well as looking like a male
version of Kate Moss on an anorexic binge !

I'm back to my "real life," whatever that is, and no recurrence yet !:)

I was unable to keep the remaining five front teeth they didn't extract
before treatment : they just turned to chalk and broke down, so I'm
officially toothless, and have a beautiful set of chompers. The upper is
very easy to wear, but the lower is driving me crazy because my tongue is
hard and enlarged, still, and I find it very difficult to wear.

I still have no real sense of taste, no real "natural appetite," and have
great difficulty swallowing (things stick in my vallecula very easily). I
have been living on an all-liquid diet of soy milk and Nestle Nutren Optimum
supplement powder and fruit juices. At this point I don't even have any
appetite for soft white steamed fish, as I did for a few months during
recovery.

But my weight is back up to 195 lbs. or so, I am strong for a sixty-four
year old guy, can work out at the gym both aerobically, and with weights,
can swim, etc. So no complaints !

To me the most important aspects of life : mental acuity, energy, emotional
happiness and balance :  all those are there in abundance for which I thank
God, Life, my doctors, nurses, and friends.

I find it strange that I do not "grieve for," or "miss," the world of taste,
food; that I am not disturbed by its absence. My sense of smell has always
been very keen, and that is intact; I can walk through a Thai market
smelling the fresh home-made Thai dishes on offer, and the "food/taste
memories" of my "love affair" with Thai food (a definite factor in why I
came to live here), come back in technicolor : but they do not translate
into the gustatory arousal of real appetite.

The only real problem with this "divorce from taste" is when I go out
socially with friends and can't participate in the "sacrament" of sharing
food; they tend to become over-concerned for me, and then I feel guilty that
I am distracting them from fully enjoying the immersion in the pleasure of
socializing over good food and talking. And, of course, it gives the other
writers I know opportunities to shaft me by the obvious pun on "tasteless"

I'm very happy to share with you that the last five months have been a very
productive period for me in both my creative work as a writer (my second
novel's around 100k words now, and no end in sight), and in my technical
work in computer programming. I do believe that there were mental
side-effects following the end of treatment in May, 2007 that persisted for
four months or so that did impair my ability to concentrate for long periods
of time on deeply complex technical problems. But at this point, I see clear
evidence that my concentration and short-term memory are stronger than ever
! ... uhhh what was I talking about ?

I do believe, without being able to quantify it, or scientifically justify
the implicit hypothesis, that on one level the "withdrawal" of "life energy"
(cathexes ? attachment ? investment ?) from the whole "domain" of appetite,
eating, etc. has given me more energy on the creative level. But I am
suspicious of that inner conclusion :  wondering if that idea is a
compensation of some form, pyschologically.

So, I think you can see I am not suffering from "phantom tongue" syndrome at
all :), and I'd like to close this over-long update by sending you my
prayers that wherever you are in the course of your cancer treatment, or
recovery, you are blessed with a clear mind and a quiet heart.

sincerely, Uncle Sally