Kerry,
As the primary food lover and provider for our family I have to tell you that not being able to cook was just as rough on me as not being able to eat. I remember the horrifying look on their faces one particular meal when I asked how everything tasted. eek It was honestly all just cardboard to me. I missed the taste of coffee for almost 2 years and also green tea off and on. The first time in my life I pickled some jalapenos and they happened to be the hottest I remember in my life. I had to reach for the miracle mouthwash to ease the pain...but I smiled through it all because I could really taste how great they were. To digress a bit, I happened to have severely whittled down on the list of "first time" things in my life over the past 3 years especially. Make that list of everything you BOTH want to do in life and pick them out in the right order and GIT UR DONE, girl.

I enjoy all foods now and really started putting back the weight about 18 months after treatment ended. Yesterday and today I spent 1 to 1/2 hours in a refrigerated manufacturing plant and even spent some time in 10 below zero in the freezer. I almost panicked a couple of weeks ago when I realized this will be the farthest from my water bottle (it is not allowed in manufacturing areas). My lips were chapped for days last time and I imagine what they will be like tomorrow but guess what...I DID IT!!! cool cool

Life is different now but so much deeper, if I can use that term. Someone on the board long ago mentioned "don't sweat the little things and all things in life are really little things" or something like that. I gave up worrying for the most part.

However, the fear comes back like yesterday when I had a voice mail from the nurse asking me to please call so we could review the results of my annual chest xray last week. I was almost planning my funeral by the time I got in touch only to hear everything was "normal again" on the other end. I had convinced myself that she would have left those two words in the message if everything was fine. WTF...do they ever think things through when they leave messages? I guess they didn't want the wrong person by accident to hear everything is fine???

Anyway, hang in there things will progress slowly and then suddenly a huge amount of time passes and you find yourself offering the same words of encouragement to someone exactly where you were at one point. The advice freely offered from everyong is spot on.

Ed

SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023