#6131 09-28-2005 08:37 AM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | [img] http://www.oralcancerfoundation.org/board_images/livestrong_book.jpg[/img] So today I am grabbing a cup of coffee in a Starbucks inside a bookstore. I notice on the way out there is a new book on the table from the Lance Armstrong Foundation. Attracted to it like a moth to a flame, since I always learn something we can use here when they put out a book, I start browsing though it. It's a collection of survivor stories from multiple perspectives, so I'm skimming through the index and there is a story from
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.
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#6132 09-28-2005 10:13 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Can we buy it thru Amazon so OCF gets a %??
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#6133 09-28-2005 04:04 PM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | My guess is that if it not on there today, it will be this week, and thank you for thinking fo the Amazon link...I should have put that in the posting. I guess I hate to keep asking people to help......
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.
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#6134 09-28-2005 11:39 PM | Joined: Sep 2005 Posts: 35 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2005 Posts: 35 | Hello again Brian,
We had a magazine write up about the yellow band and how it had become more of a fashion statement and not many people knew what it signified. The magazine also suggested that one should purchse the band online. I found that totally ridiculous and expressed my reasons as to why.
In the first instance - its not if on understand the significance but for people like us who have been thru the trauma and pain of cancer -its a welcome sight.
Secondly buying it online does not make sense as far as India is concerned as I do not see the reasoning why the people here should shell out so much money that will go towards patients in developed countries while here in India where the cancer is on the rampage people cannot even afford the initial treatment and we no such thing as social security or medical facilities free to take on so many millions.
What do you feel Brian?
_________________________________________________
Ananth - cancer of the larynx 47 years old. Cancer free for one and a eight months. Diagnosed in April 2000 in its final stages.
"FIGHT AND YOU SHALL OVERCOME"
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#6135 09-29-2005 03:30 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | I'm sure they are suggesting the on-line purchase because there are so many counterfeit bracelets going around, we have had numerous arrests in my area. It would be a way to insure that the money is going to the foundation and that the bracelet was real, nothing more. Make a local donation if you are concerned about local funding and buy the bracelet on line to help fund research. Any positive research will certainly make it to your country. Glenn | | |
#6136 09-29-2005 07:56 AM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Glenn has this right, there are a ton of China manufactured, EXACT copies being sold on the street, and the money never gets close to LAF...just to some opportunist's pocket.
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.
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#6137 10-03-2005 05:33 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Brian,
I must admit, WHEN I buy the book it solely to read about you, my friend. I have cut and pasted your interview on this site to many people, unfortunately, without your express written permission. I believe reading the interview brought tears to my eyes as I felt your pain in many ways, some just as memories of what it really was like. I think your interview and Sabrina's clipped email helped me come to grips about what it was really all about as I mumbled to people how good I was doing. The journey was undoubtedly tough and my mental and spiritual healing was helped tremendously by the two aforementioned accumulation of words.
Now...I would like to also thank...just kidding.
You are the greatest (at least in my eyes)!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#6138 10-04-2005 10:33 AM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Thank you, but please remember, we are all in the same boat. All the battles are tough. If anything I was the biggest cry baby of them all when others were able to tough it out with greater inner strength, and worse outcomes. And really.... when you read the other stories, you will clearly see that I am just not that interesting a person, nor nearly as inspiring. There are some really tough and inspirational people in the book. It's a privilege to just be in their company and the company of those here at OCF.
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.
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#6139 10-05-2005 03:52 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Just saw Lance Armstrong ride and speak two weeks ago in Portland where his group raised $1.3 million for cancer research in Oregon. Had two nephews riding with him and our whole family cheered them on! I was wearing the yellow 7 OCF shirt and he gave me a thumbs up as he cycled by! Was a great way to celebrate my 3 years since end of chemo anniversary and also buy more of the original bracelets! He is very inspiring - go see him if you ever have the chance. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#6140 10-05-2005 03:36 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Kris,
What an awesome story! I can only imagine what both you and Lance felt as your eyes met and he saw the shirt. WOW! It really makes my heart swell. Happy anniversary, too!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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