wfc
Like David, I refused to get a PEG or feeding tube of any type during my first round of radiation (40 treatments for a total of 72 GY -the "maximum") and my chemotherapy. Like David I was also at a good weight ( 177 lb and 5 foot 11 inches ) and working out at the gym every day plus doing yoga and pilates. I ended up at 133 lbs and spent a half an hour for each can of Ensure I could push down (total three hours a day at the sink )
I was so proud of myself for not getting a PEG that when I joined OCF, I started brand new the PEG wars - advising everyone NOT to get one - that you would forget how to swallow- etc. I was stunned by the pushback but just decided that weak people could still type strongly. I even cheated on the weigh ins with fishing weights in my vest and blackberry etc to read above the 140 lbs that my doctors had insisted I maintain or else they would quit radiation.
I WAS WRONG AND SHOULD HAVE GOTTEN THE PEG. This time around I had no choice- after the surgery, I failed my swallow test and still cannot even do a sip of water let alone any food. I am working hard at rehabilitation therapy but with such scarring on my epiglottis and missing half my tongue muscle, it will take almost a year they now estimate especially because I need to go get even more radiation - CyberKnife after memorial day,
There are so many psychological reasons NOT to get the PEG and yes, at least FIVE people on this board (out of 6,000) did indeed get through major radiation and chemo without it. Long story short,GET THE PEG NOW because they can do it easily without a major operation like I needed. (Just got the bill in for the second PEG which was $6,000 and I pay $500)since they had to do it via fluroscope in an operating room . Right now they can put in a PEG easily, BE SURE TO GET THE BIGGEST ONE, they will get you and NOT LESS THAN 14 FR at the very minimum. Search the posts here and you will find that unlike Urology, for PEGs, Size does Matter
Save your stubborn pride for the dark times ahead and do not fritter it away on avoiding the PEG. You don't have to use the damn thing if you don't need it, but it will be there if you do, Keep on drinking and swallowing every day anyway.
Charm
