| | 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 |
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Leslie
FANTASTIC find. Thank you so much for posting this link. It was great to read it. I felt compelled to comment to Mr. Ebert that he should really reconsider hiding in the bathroom of the airplane to use his G tube. I just whip mine out when I'm on the airplane and I'm in the cheapest economy seat so there is zero privacy. Plus he hides out when he is at a festival.
I think he would be pleasantly surprised how nobody notices
But I digress. Thanks again
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | I thought of you when I saw this, Charm! Found it through a Facebook friend (non-OCF), a food writer/editor who linked to it with this comment: "Roger Ebert is taking food writing to a whole other level."
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | What a great column!! I really enjoyed the comments following it, too, and the very caring and delicate way they formed their questions, especially this one from a Malden, MA reader: <<Please excuse the indelicacy of this question, but has your feeding regimen affected your renal and excretory functions in any way? Understandably, a simple "yes" or "no" will more than suffice.
Ebert: No.>>
I love that Roger Ebert, he is a whole other level of human being!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | This was a great find, and a way to the man, so to speak. I will post to his column later about how helpful it is for someone in his celebrity caliber to openly talk about it, and that it made its way to the OCF patient forum. Charm if you don't post to him as our resident PEG master I'll be disappointed.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 enjoyed the article very much! Thanks Leslie!
I am like Mr Ebert and do not do any feedings or take meds in public, not ever! I have seen Charm do his feedings while his wife and I ate our dinner. He is very discreet and yes, nobody even notices. Funny thing is when Charm and I met, we compared our tubes as neither of us have a regular one. Meeting other people who use a feeding tube is very helpful! It is very nice to see Mr Ebert bring this out in the open bringing understanding of other ways to eat besides what regular people do!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | This topic, and also remembering comments a while back about advantages of tube feeding made me realize how much time us "regular" feeders spend in preparing, storing and eating food! We eat as an accompaniment to TV watching, we are strongly encouraged to eat/drink while at the movie theaters, when children come over, we Moms usually say "Are you hungry?, want something to eat?" We have lunch meetings to discuss business/fun while eating. Food seems to accompany so many things, I'm beginning to realize it does take up a whole lot of time! If my children come over for Mothers' Day, I am definitely not going to cook. I think I'll just relax in my back yard swing, read a book and sip a Slim Fast.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | I think the guy is great. We used to watch his show as a family and go or not go to movies based on his reviews. I remember even way back then thinking that he seemed like such a cool and friendly guy. I posted to his blog about my experience with oral cancer, my increadibly good fortune to have a very curable form of the disease, the OCF, my family, my med team. The whole experience I guess. I know my battle was small compared to his and to a lot of the folks I've met here, but I'm still going to take this as an opportunity to better my life, become a stronger more productive person, not waste time anymore, and helping, calming, educating, and sharing my experience strength and hope with newcommers to this awesome group that I was so lucky to find.
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 | KUDOS TO MAINE WILL. The Zinn man not only posted to Mr. Ebert's blog, he shared how great OCF is, AND he got a public response for Mr. Ebert saying
[quote]Ebert: Thanks, Will. I'll check out the site.[/quote]
I did post also, but no response, but then Ebert probably just feels like Christine does about using the tube in public. Plus I'm not famous so there is no spotlight on me and it suddenly dawned on me that Ebert has to worry about paparrazi and tabloid press.
Great job Will.
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: 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 | Charm, I thought the same thing. People dont pay attention to us when we are eating in a restaurant since we arent famous. But for Mr Ebert to be out in public, everyone watches his every move. I wouldnt put it past some paparazzi to try to get pictures of him with his tube hanging out or him being fed by it in public. There sure are some despicable human beings in the world!!!! Way to go Charm and Will for writing comments on Mr Eberts article. I think I will add one too and of course mention OCF
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 | | |
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