| Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Christine also got a lovely comment at the end of her post, in which she mentioned her work with OCF:
Thanks for bringing awareness to the public about what life can be like living with a feeding tube. Be well Mr Ebert!!!!
Ebert: And you, Christine. And now you are helping others.
I like to think of it this way: I would still have my jaw had I been willing to die five years ago. So I think I got the better part of the deal.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I just posted something on his blog. I sure hope he comes to check this place out.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I just checked it and am surprised he didnt edit my comment. It was rather long. He even responded to it. What a nice man!!!!
Hope he does take a look at OCF and see what a great place it is for OC patients and their caregivers.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I just read this and thank you for posting it Leslie. I don't think I could hide in the bathroom tho. LOL Might be some lingering odors in that place. Or maybe some little hopping things.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2011 Posts: 131 Likes: 5 | Thanks Charm, Now all I have to do is convince him of the wonders of Manuka Honey. Just kidding. So, I'm re-reading what I wrote to him and realize that I left my Phone number. Duhhh!!! Well I'm not talking right now either as I'm trying to save my voice (which I may have done some permanent damage to the other day). Maybe he'll realize I'm a big texter. Seriously though.... what a cool guy. Wouldn't it be something if he became an OCF member. We would all have to be mindfull not to hit him up all the time for movie opinions.
BTW. Do you or anyone else want the 40 or so cans of formula I didn't use. It's called 2cal I think. I gave back all the hardware but kept the product in case anyone here wants it. I was under the assumption that it was expensive but I don't think it is. It might cost more to ship it than it's worth. Let me know bc it didn't cost me anything. Will
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Will
Glad to see you still have a sense of humor about my good natured razzing over the honey. Hey, that clinical trial may prove it is the way to go. Again, thank you for getting Roger Ebert to take a look at OCF.
I'm going to pass on your offer of 40 cans. You are right about shipping adding up. When I had about 4 cases (96 cans) left over of the Jevity 1.2, I called around until I found a local hospital's feeding tube department who were glad to get them to give out to their charity patients. It did take about 15 calls, but I could drive them over and drop them off.
Congratulations again on evoking a response. And don't forget, Ebert has that nifty computer rendition of his very own voice, so he may call after all. 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
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