x28007, Nelie, John, EzJim, William, Cookey, JBNish:
Looks like I'm the second most senior user at 490 days, 10 hours, 4 minutes and 32 seconds up to.....wait for it....one heartbeat ago. But who's counting?
What a range of g'tube experience you folks have. I fought against the peg right to the point where my Oncologist threatened to cancel my final chemo treatment the following day unless I regained the 8 pounds I had lost the day before. Came close, but in the end, I had dropped below our agreed threshold weight, and it was the peg or no chemo. The doctor had cheated, I reasoned at the time, and vowed never to divulge a personal goal to someone else ever again. (She knew that my primary goal throughout treatment was to survive my last scheduled date with Cisplatin!)
Now here I am, 490 days, 10 hours, 7 minutes and...sorry, the timer goes off now.. with this hated appendage still choosing the menus in my life. I have even allowed myself to contemplate a future with a permanent g'tube, and that is how far my mind has wandered. Mind you, it would sure be a lot more tolerable if they made a turkey or steak flavoured formula; on second thought, no tube would mean a much larger dish load to clean up! Hmmm....
On the brighter side, I am able to eat ice cream without too much problem so long as I maintain a particular sitting angle, otherwise it pools up in my throat and aspiration becomes a real threat as my epiglotis does not fully function. I think the texture, temperature and viscosity of the ice cream all combine to make it work in my favour whereas Jello and pudding do not.
Most people think I am kidding about my ice cream training aide, as though flavour and joyous mental imagry played a part in my selection. I guess I would have to feign the loss of my taste buds to build any credibility on this point.
I confess that I am able to drink a piping hot mug of freshly brewed and ground organic coffee in the morning, which is the second reason I wake up every day.
In all seriousness, I may now be in a position where I could expand the scope of what I might eat, without increasing the risk to my dentition, and gradually allow normal feeding habits to overtake g-tube convenience, reliability, efficacy, cost to nurture and the best damned blood chemistry I've ever had.
Does that sound like something a former gourmet scratch cook with a $100 per ounce balsamic vinegar habit might say? Food and food preparation used to be the only reason I woke up every day, but that was before cancer left a bad taste in my mouth!
Until recently I haven't been able to clean my teeth properly and two of my dentists spooked me with the knowledge that my teeth were deteriorating at an alarming rate, thanks in part to the lack of saliva. The thought of exascerbating the problem by introducing food related bacteria turned me off of further experimentation until I could maintain better oral health. That day could now be here, finally, thanks to a few months use of the Therabite device.
I have had many months of therapy with a Speech Pathologist, but its now on hold until I can re-start the Therabite again; I have some exposed bone due to osteoradionecrosis on the lower mandible that hasn't fully healed, and the strething exercises became too painful. Until then, all I have been instructed to do is practice "hard swallowing" as often as I can. There doesn't seem to be any other exercise or procedure that can help my condition, and electronic stimulation is not an approved procedure in Canada as yet. I don't want to challenge the knowledge base of the pathologist, but I do speculate about her lack of on-the-job experience and whether this might have something to do with such few treatment alternatives.
I am hoping to find more information about swallowing techniques and the how-to of eating in a post-radiation scenario by researching this website. Reading your posts has furthered this process and I thank you all very much for letting me ramble on.
Good luck and good lunching to you all...
JT2
