#3832 09-28-2004 04:03 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | One of the hightlights for all of us that made the trip was looking at the photo album that Dan put together of those that were there in spirit! It was so emotional putting names together with smiling faces and seeing the caregivers and kids!! Not a dry eye in the crowd when we were looking at those pictures. Never met a group that had so much love to spread around!
Hope we can increase the team next year! Start saving those pennies and maybe we can pick a place that doesn't have gambling so we have extra money around for the silent auction!! Support OCF and wear your hats!! - Love, 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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#3833 09-28-2004 07:03 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Bob, you crack me up! I will be there next year for sure.
Danny, would it be possible for us to see the photo book? Maybe put it online somehow? I would so love to see photos of everyone.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#3834 09-28-2004 07:34 AM | 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 | All, Yes, indeed it was a great time! I, too, enjoyed seeing all of you and especially the rather large group of Minnie's girls! (That was just the family I believe.) All of you that weren't there were certainly in my thoughts most of the time and I look forward to the opportunity to meet each and every one of you. I sort of like the Vegas slant though because it gave me an opportunity to get some of the travel money back. We (UptownGirl and I) each had a bit of luck at the end of the night Saturday. I did beat her by $9 if anyone is keeping track  and I am pretty sure that I used less to get there but please don't ask her, just in case  . Oh yes, Nickie, I am sorry about our 'Boys taking care of your 'Skins last night. I beieve the record now extends to 14 and 1 between them. :p Sabrina, I was so disappointed you weren't there and I was checking out every high energy female in line at regstration...wondering if they could do the "butt dance". I missed you and hope all is going well with you. Had you been there I wouldn't have been accused of "gawking" at all of the younger females. I tried to explain but didn't get any points back.  Thanks to everyone that helped to "Make the Memories"! I love you all. 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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#3835 09-28-2004 09:57 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Well, I left more in Vegas than I wanted to. However It was a wonderful time meeting everyone in person. My target at the shooting range definately got his radical neck dissection! I have concluded several things: 1. The average age of an SCC patient is MUCH lower than "they" (the experts) say.  2. The average OCF member has a VERY good looking spouse.  3. Everyone BUT me wins when gambling.  4. Casinos have an air quality ISSUE!  5. People do not always look like you imagine they do. (and the pictures taken might not look like you either) :p 6. If you didn't make it to this first OCF get together, you HAVE to plan to make the next one!  Thanks again to the planners and instigators, I will always remember this trip.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#3836 09-28-2004 10:19 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello All,
My family and I had a great time in Vegas, The highlight was meeting all the members who attended. I thought all of you were great people
before I met you. Meeting all of you exceeded my expections. I am as pumped up about this website and it's members as I have ever been. Thank you all for making me and my family feel so loved.
Bob,
You did a fantastic job of handling all the arrangements. I look forward to helping out more next year when I'm past this re-occurance.
Gary,
I think I am about 1/8 of an inch taller than you?
Ed & Susan, (Uptown * Uptown Girl)
I love you both like family. Thank you again for the smoked salmon. It was a gesture that touched me deeply. You both deserve nothing but the best.
Minnie, As soon as I can figure out how to post those pictures I will. It will be soon. I also have some from the get together that I will be posting or sending via email.
Judy, You looked great. Thanks for helping get this done. Anytime you and Don want to see a Packer game give me a months notice and I'll get the tickets. You both would really enjoy seeing a game at Lambeau Field.
I will be emailing everyone who attended and attaching photo's to the emails.
Thanks again, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#3837 09-28-2004 01:01 PM | Joined: Aug 2002 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2002 Posts: 76 | Is there any possible way to see pics of the book Danny brought to Vegas??
Pics were great thank you so much for posting them.
Sherrie Lynn
Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
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#3838 09-28-2004 02:47 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Gary,
What exactly is the link to see pictures? I am dying to see a bit of what I missed. I was so depressed all weekend here in Birmingham where I don't know anyone but my hubby, and knowing that you guys were in Vegas...meeting each other, eating and gambling!!! So glad that everyone had a great time!
Deb
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#3839 09-28-2004 04:41 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | It sounds to me like the reunion accomplished its lofty goal, which was to inspire everyone and form a bond stronger then the one already present. I wasn't even there and feel like I got something from it all! Someone explain that one.
Ed, yes, the pictures were of my girls.........it just looks like a small crowd, lol. I have 7 girls and would you believe that my sister has 4?? My husband also has a son and a daughter from a first marriage. His first wife became one of my best friends after we met so the houses just kind of mingled over the years. Lets just say that we are rarely lonely and if we do find ourselves alone we are bored within minutes and start calling the kids.......not sure what I will do when the four we have left at home move out.........guess that's why we are blessed with grandchildren. God has certainly guided me well with my children, they are all a blessing.
Has anyone thought about maybe having the reunions every six or nine months instead of yearly spreads? Just a thought.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#3840 09-28-2004 05:30 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | TO ALL
Crying, laughing and crying and laughing as I read these posts...I'm so glad the gathering was great...Minniea I can't explain it either but I felt the same way, especially when I saw the pictures...Good vibrations from excellant people are a powerful force....Everyone here has helped sooo very much over the last 5 months ...I can't and don't want to imagine how hard this would be if this site and all of you weren't here to do this all important work...everything, absolutley everything that has gone right with coping with this disease has been because of the people here...Ever grateful...Hope we can make it next year :)LUV YA Denise and Bob
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#3841 09-29-2004 01:51 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | It was wonderful to meet so many of you and your families in Vegas. It really meant a lot to me and especially my husband who has had no support group of any kind through this. Thanks Danny for suggesting it and thanks Bob and everyone else who helped put this together. The album was marvelous. It made you all be there with us.
Gary,
I need to see these pictures. How do I get to shutterbug? I'll email you to get link tomorrow. This machine can't handle it.
Bob, it is Eileen and Charlie, not Ilene. How do I get to your picture?
What a great experience. The rest of you guys MUST make it next time.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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