#94812 05-02-2009 04:22 PM | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Congratulations to Susan Mushock, Ray Flaherty, Eva Grayzel, Dave and Jim, they did a fantastic job on the Bethlehem Walk! It was a great day!
The rain held off, looked iffy in the beginning, but it turned out sunny! They had a great turnout, food (lots!) raffles, a DJ, free screenings and losts of supporters. Some OCF members were there as well, Christine B, Suzanne98 (Suzanne Gallo), it was so nice to see everyone there.
They put alot of hardwork into this walk and it showed. This will be an annual event so those who could not make it today, you have next year!
Thank you to you all for supporting OCF and oral cancer awareness, you have made a difference today!
Susan
(If anyone is interested in doing a walk or any other event to help spread awareness, let me know!)
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: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Congrats to all! I am so glad you had great weather and a great event!
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You all m,ake the ones of us that are too far away to have been there, proud to be associated with you. Luv your gumption and you.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | It was really fun....I know me and my family had a great time. Susan L, Susan M and Christine...it was so nice to meet you. I think I missed Ray!!! But we were probably in the same picture together:)
A special thank you to Patty for sending us the sun!!
xoxo
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:)
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Thank you to Susan L and Suzanne for coming "all the way from Jersey" to our walk! We had a great turnout for our first event and it was so much fun and such a rewarding experience that we will do it again next year.
Including the 5 OC survivors on our planning committee, there were 4 others that attended the walk with their friends and family. The walk was held in a very nice community park and there were a number of other activities there that day, and there was a man there attending another function that was an OC survivor. I spoke to him only briefly and he was looking for a support group, so of course I gave him literature on OCF. There are more of us out there and we just need to do more to reach out and support each other.
We had three people doing the OC screenings � a dentist, a dental hygienist, and a physician assistant from the ENT group I go to. They were keep pretty busy doing the screenings, and I am very happy to report that they did not find anyone else that needed to join OCF (at least for a medical reason)!
Suzanne � Ray was in the group photo we took at the end � he is on the end standing next to me. If you didn�t get a picture, I�ll be glad to send you them. We also made the local news � they showed a brief video of the walkers, and they got our group when we were �walking and talking�!
Susan L � thanks for all your help today and before the walk. We couldn�t have done it without you. I plan on being at your walk in September.
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: 2013-2022 (ORN)
| | | | | 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 | Susan, we had a great time today at the walk. Glad we had time to talk. It was a nice turn out and everyone had a great time. You make everyone feel so welcome immediately when they first get there. Congrats on the camera!!!
I was happy to finally get the opportunity to meet Suzanne. What a nice girl she is, very sweet and even cuter than her pictures. She brought a whole crowd with her. Thats true support!
It was nice to visit and catch up with Ray. He looks very good and sounds like he is doing great. Cant wait to see pictures of his puppies when he gets them. Great job at fundraising for OCF!
Susam M (Susan2992) worked very very hard on the walk. She did an awesome job at organizing everything. It was very nice to see her again. Thank you Susan for pulling everything together for this event, it was wonderful. Hope to get a chance to catch up more before the next one.
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: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Are you going to post pics on Facebook? :-)
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Two Susans and a Suzanne, my head is spinning. I'm so glad I know all of you through emails and meeting Susan L. last year.
I'm so happy for you that you got the sun that I prayed for and you got to meet. I'm so jealous that I couldn't be there this year. Sounds like it was a great success as well it should have been with all the work that you guys put into it.
I was happy to hear that Christine and Ray were there to.
You must send the pictures to Brian so that he can get them on the site as well as Facebook. This way those of us that weren't there can see what we missed.
I hope to see all of you in Sept. at Susan L's walk.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez, if I had come , would I have been allowed to walk behind the ladies and watch their rear pockets move about?? LOL J/K.. I am jealous and wish Bethlehem was closer to the Ohio Valley.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Jim,
If you had come we would have insisted you walk with us (either leading or following � your choice), and we would have worn T-shirts that read "Jim's Angels"!
Jerry,
I�m planning on attending the �other Susan�s� walk in September � and don�t worry we will wear name tags to keep the �Susan/Suzanne� straight! I will sent some pictures to Brian, but I will have to defer to someone else to get them on Facebook (haven�t figured that out yet).
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: 2013-2022 (ORN)
| | | | | 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 | We'll get them on the OCF Facebook page the as soon as we get them from you, or anyone else that was at the walk.
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 | Christine..you're sweet:) I did have a good group of people. It was my sister, my sister in law, my best friend and of course my husband:)
Susan2992...if we were on TV does that mean we're famous?!?! How exciting!!! I did get a picture of our group at the end and I see Ray in it. I don't know how I missed him:)
Jerry, we will name tags in September...can't wait to meet you there!!
It really was so fun to meet everyone in person. It seems so long ago I found this site and now it feels like home.
xoxo
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:)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Susan,
Since I met Susan L. at her walk last year, I may be able to tell you apart. Also, Eva was kind enough to send me a couple of pictures, so now I have "met" both you and Ray.
Suzanne,
Haven't seen a picture of you yet, but the spelling will help out.
I'm looking forward to meeting everyone in Sept.
Maybe with enough notice, Jim will be able to make it.
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) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Christine, It was great to talk to you and your daughter, she is lovely!! It was a good day. Sorry I did not say goodbye! You know I never win anything, so it was really nice to win!!
Jerry, sorry all the Susans/Suzannes are making your head spin! LOL. Suzanne has long brown hair, that should make her stand out (and young!!) NOt that Susan M. and myself are not young, but she is "younger"!!
So looking forward to seeing everyone at my walk in September! This is so wonderful to see everyone a few times a year!
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!
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