D,
I'll add a few things to Mark's list that I couldn't eat. Any fruit - not even cantelope, fruit juices unless extremely diluted (because of the acidity). Mark was absolutely right about having to making eating and drinking a highly focused priority (An extreme challenge when one is sick as a dog from combination radiation and chemotherapy). I never realized just how hard it was to take in JUST the 2-3 liters of water a day to avoid dehydration (Did I mention that I had to be rehydrated twice in the hospital - once in emergency) when you can only take small sips (that's a LOT of small sips), let alone all of the calories required. That's about 4-6 cans of Boost or Insure every day (I couldn't stand either one of those so I lived on Carnation Instant Breakfast and coffee flavored milkshakes - strangely enough it was the ONLY taste bud that still worked). All the while in pain, fatigued, sleeping all the time, none to horrible taste, mucositus, etc. I never got to the point of even trying blended drinks because I struggled so much with just the Carnation Instant Breakfast. We were given a brand new blender and it still sits unused. It's only through the natural will to survive and the grace of God that I got through it.

I am smaller than Dan, 5'6", was a little heavier going into it, about 170 (and in great shape going into this) and got down to 109 lbs (I can't even REMEMBER when I weighed 109 -4th grade maybe? I would look in the mirror and see someone who looks like a Nazi death camp survivor). I am still wearing some of my wife's jeans and she is a size "0". My t-shirt size has gone from large to small -Hey Brian can I trade some of my t-shirts (just kidding, I plan on growing back into them).

Almost 5 months post radiation, putting the weight back on has been very challenging, and I suspect that my consistently low WBC is a result of poor nutrition. And my appetite, taste buds and swallowing are great now.

There were times it would take an hour or more just to get up the courage to swallow the pain pills (little tiny morphine pills) for the breakthrough pain involved in swallowing (now there's a paradox).

The "pink magic -topical lidocaine & morphine" would make me vomit most of the time (but I would still get about 10-15 minutes of "swallowing time").

Thrush was also a major problem for me and greatly exacerbated any and all swallowing issues and pain. I still take a maintenance dose of Diflucan.

There were a few times that I actually thought I would die. Would I get a PEG tube knowing what I know now? You bet (grin -for you Joanna ;-). It would have made my management (yes I needed to be "managed" - I can admit that now) a lot easier on my long suffering wife, my only caregiver.


Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)