| Joined: Mar 2014 Posts: 22 Member | OP Member Joined: Mar 2014 Posts: 22 | Hello, I was diagnosed with cancer in and around my left tonsil. I went through chemo and radiation in 2003/2004. I've been in remission for more than 10 years now. Unfortunately, the radiation did severe damage to the left side of my head and neck, including my cervical spine, left lower brain and jaw. I went through several jaw surgeries to try to fix the problem. All were unsuccessful and the last one took away my ability to swallow. I've had a feeding tube (PEG tube) since 2008 and I've been completely reliant on it since April 2009. I'm looking forward to talking to other tubefed folks and helping anyone who feels overwhelmed by the prospect of eating blended meals through their tubes!
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Welcome to the family, Brian, and thanks for the generous offer. You sir, are one fine compassionate human being and it's nice to have you among us!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Mar 2014 Posts: 22 Member | OP Member Joined: Mar 2014 Posts: 22 | Thanks, Bart. For some reason you remind me of a tough-as-nails MSgt I worked with many years ago at Hurlburt Field--also named Bart. You're not related are you? :-)
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | Joined: Mar 2014 Posts: 9 Member | Member Joined: Mar 2014 Posts: 9 | Hello Brian. I had my turn with the peg tube in 2012 during radiation for throat cancer and it was not fun. I'm now dealing with some new cancer issues and, in fact, may be doing jaw surgery(ONJ) this Wednesday. Is long story. Too long. I just want to welcome you and say thank you for the offer of help.
| | | | Joined: Mar 2014 Posts: 22 Member | OP Member Joined: Mar 2014 Posts: 22 | Thanks malwicker, The PEG tube was difficult to adjust to, but I've grown accustomed to it. I've gotten to where I bring my blender out to restaurants and ask them to blend up my order and bring it out to me so I can eat my meal with my family. I also try to come up with the most odoriferous blends, such as the sardine/brussels sprout/orange blend I had a couple months ago. Have to meet it with the right attitude. I'm a tubie for life. :-)
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Brian welcome - and you might as well have fun with it.. 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2014 Posts: 22 Member | OP Member Joined: Mar 2014 Posts: 22 | Thanks for the welcome, Cheryl!
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hello Brian - I'm not on a PEG but do share Hurlburt Field memories and a friendship with Bart with you.
Bart gets most of the credit for getting my mind in the right place for this journey down Cancer Avenue.
If memory serves Hurlburt was one of the auxiliary fields of the Eglin AFB complex where I did my summer camp training prior to commissioning back in 1973. After that I went on to fly B-52's at Ellsworth until 1981.
What did you do at Hurlburt?
Welcome to the forum.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Mar 2014 Posts: 22 Member | OP Member Joined: Mar 2014 Posts: 22 | I don't think it's the same Bart I knew at Hurlburt, Tony, that would be too wild of a coincidence. :-)
I was an intel officer there--not a terribly good one I might add--from '99 to '02. Do you still fly?
Thanks for the welcome.
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Brian (and Tony),
Brian, the answer to your first question is "yes, we are related."
Just not real closely...
Alas, my branch and period of service made assignment to Hurlburt an impossibility for me. I was Army, 1957-1967 and the Special Operations community that we know today was just a gleam in it's collective daddy's eye in those days. I was a cannon-cocker and served in an Airborne 105mm Howitzer Battalion (in Wiesbaden, no less) in Germany, '63-'65.
BTW, in anticipation of the question ending with "...perfectly good airplane?" look in the dictionary under "Oxymoron."
It says "See perfectly good airplane."
VBG (very big grin)
Bart
PS. Good Luck with your surgery tomorrow, Malwicker! B.
Last edited by Bart; 03-25-2014 08:23 AM.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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