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Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Well, it's not me, sad to say. After two and half years of dithering over switching to a button, I bit the bullet and was supposed to get one last Thursday. I had hesitated all this time because of my CCC doctor's warnings that my pill crushing, blenderized diet dinners, doing happy hour right after Jevity 1.5 on weekends (wine causes Jevity to fall out of suspension and clump up immediately into a gooey mess) all put me at risk of clogging or breaking the anti-reflux valve in the button. Plus the button needs to be changed every three months before the balloon bursts or leaks while the tube's buttons lasts 5 months.
But all the OCF posters who have switched have loved it and I've found OCF advice post cancer advice more reliable than my CCC doctors.
Just like last time, the balloon deflated entirely on Wednesday, the day before my scheduled change of tubes - right in the middle of Yoga class. Even I was somewhat embarrassed to have to clutch my tube as it started to fall out, push it back in and race out to my locker to tape it in place until Thursday,
But when I'm stretched out on the Interventional Radiology surgery table, they discover the special order button has a shaft too small by one centimeter. Since I needed a tube then and there, once again a tube goes in.
(Tubes don't need special sizes, you just slip them in until they fit- the buttons have a pre cut shaft that must fit exactly into the stoma, no longer, no shorter).
Turns out all those crunches and ab work added that extra cm onto my abdominal wall since I was measured last year. I certainly didn't add any weight or fat although I could use a few more pounds so I could technically be a Welterweight boxer. Oh, well, there is no valve to worry about so I guess I can enjoy Happy hour this Labor Day. I will raise my glass to all my OCF family
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Have a drink on me good sir! I shall raise my glass in your honor today, more then likely several times! You are a gentleman and a scholar.

Here's to frackhood!

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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