| | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | What a great event. My husband was truly moved by how caring everyone was. It's really wonderful to meet people who are in the same boat-not that the boat is wonderful but the passengers are. I'm so glad to have met Christine, Jerry, and Susan. This was a great precedent to set!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Susan
Your event was a beautiful tribute to your brother. You did an excellent job at hosting the walk. Eva was so inspiring. It was so nice to meet my OCF friends Sue and her husband Neil, Jerry, and of course you. Thank you for helping more people become aware of the importance of dental screenings.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi everyone,
Susan's walk shows what hard work can do to bring together a community for a common cause. The turn out was great and I'm sure that next year will far surpass yesterday's attendance as the word spreads about the importance of early detection and the work that OCF does.
The location was great, the food was plentiful, the scenery was spectacular and I had my umbrella to assure that it wouldn't rain (nad it didn't). Besides being able to meet and spend time with OCF members, Christine, Sue and Neil, Susan and Eva, I met a friend of Susan's, Cassie. Cassie is a 10 year OC survivor and has been cancer free for 5 years, having had a recurrence 5 years ago. She has promised me that she will visit the OCF site and I hope she becomes a member.
As always Eva's message was motivational as well as emotional. There were 3 dentist's there that provided oral cancer screenings to participants and I spent some time talking to all of them.
I took some photos that I will be sending to Brian later today to add to the website so all can get a chance to view them. I hope that Susan and others also took some photos to send, as some of mine didn't look too great.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Thank you Jerry, Christine and SueMarie for your kind words. It was so nice to meet all of you. You all are an inspiration and your presence made the day that more special. And it was great to meet Neil, Sue's husband. Please thank him for me for coming as well.
I do think it turned out great. The rain held off, which I am so thankful for. For the first event, we had 80 people attending, with 60 walkers. So I am pleased with the results.
The dentists who attended did a fantastic job with the screenings, and they said they will all be back next year.
Eve did a great job with her talk, people were inspired by her story.
We definitely had enough food for everyone as well. Local vendors were very generous with their donations. All of it was donated.
But most of all we honored my brothers life, spread the message about early detection and promoted the work of the OCF. So I was very happy with that.
I want to thank all who supported me during the planning stage especially Brian Hill. He guided me through this whole process and was extremely supportive. I could not have done this without him.
I hope next year, my attendance will double so more people will be aware of oral cancer, early detection and the OCF.
I do have some pictures, my battery did not make it, ( I will work on that for next year) but between Jerry and I, we should have enough.
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | Susan,
I'm glad to hear the walk was a success. Thank you for all your hard work. Although I wasn't able to attend the walk in person, I was with you in spirit. Hope to be able to make next year's event.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Thanks Susan, I really hope you can make it next year. Having OCF members there made it so special.
Christine, Suemarie, her husband Neil, Jerry and Eva made it a real OCF event!
We did make a difference!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | You did have a good turnout from the OCF family. How wonderful. I certainly hope to make it next year.
Are you still accepting donations? If so, let me know how to contribute.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 |
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: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | http://www.ocfstore.org/category_s/64.htm You can change the sponsorship number to add multiple increments if you desire.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I have often wondered, are there bracelets about Oral Cancer? They appear to be a great fund raiser. Similar to the pink ones for breat cancer. Is this something that can be done? I know I would buy them.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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