#17608 06-12-2005 03:37 PM | Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | OP  National OC Advocate/Speaker Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 30 | I was diagnosed 7 years ago at age 33, stage 3/4 lateral tongue. Never smoked, rarely drink.
Had: radical neck dissection, 1/3 tongue reconstruction, and max radiation. As a professional storyteller, I have been blessed to remain articulate. I have convinced many of the organizations for which I perform to have me speak on Overcoming Adversity, and I have had the opportunity to speak to many groups across the country on OC screenings.
I think I can best help others on emotional support, and suggestions for organizing the support network, which frees up the caregiver. I found that many people want to help, they often just don't know what to do, and sometimes make life more difficult (like sending plants that need to be watered, and huge flower arrangements that require cleaning up pollen, fallen petals, and must be chucked in a very large garbage bag which can make such a mess!)
Eva
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#17609 06-13-2005 01:07 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thank you Eva. I totally enjoyed your website. You have such an awesome career and thanks for speaking out about OC. God Bless, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#17610 06-13-2005 01:52 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | What a great post...Welcome Eva! Hang with us a while.
You will be a great inspiration to our members and we need you.
Thanks
Marica
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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#17611 06-13-2005 04:59 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Eva, I had a good laugh at your post. MY edict to my family for the last 10 yrs. has been- if it's Mom's day, Easter, Valentines, etc. Please Don't send flowers! I love funny cards or maybe someone cooking dinner for me. Your web site and your success is a great contribution. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#17612 06-14-2005 01:42 AM | Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | | OP National OC Advocate/Speaker Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 30 | Carol, Marica, JAM,
Thanks for your nice replies. I started The Red Balloon Group to help others in a broader way with organizing the support network. (Did you see the bookmark I tried to 'market'? it's on my site) However, I did not have what it takes to get a non-profit off the ground. I'm continually astounded at the work Brian has accomplished virtually on his own.
Eva
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#17613 06-14-2005 04:41 PM | 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 | I have had the pleasure of meeting Eva on two occasions, and I can tell you she is a powerful advocate for oral cancer issues. I gained a great deal from talking with her about the issues, her work with the ADA, and her own journey through cancer.
She was kind enough to come to my award ceremony in NY, and gave me a very gracious quote in the press release on the same. I hear that she is teaming up with Barbara Boland and with Dr. Wilck to do some speaking as well. Nothing I like better than another ally in the fight
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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#17614 06-16-2005 01:03 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I did not find this wonderful forum until I was home from the hospital. I was, however, very fortunate to have found Eva, before my surgery. Her concern, words of comfort and promises that all would be well, were very much appreciated and she was right. All IS well. I know that I would have been a basket case going into surgery, if it had not been for Eva's encouragement.
Since my surgery on April 6, 2005, we have met twice and Eva's influence on my desire to turn my experience into a positive one, has grown tremendously. I hope that our plans to work together promoting "Early Detection" will come to fruition and that we CAN make a difference. I know that she has, already made a difference.
Next week, Barbara Boland, another OCF member and survivor, and another "Early Detection" advocate, will be coming to my dental practice, to help train my staff and me to be even better in our oral cancer screening techniques. Eva will be there, too and this will give them the opportunity to meet and for me to share some time with two very special people.
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"
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#17615 06-20-2005 08:15 AM | Joined: Apr 2005 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2005 Posts: 44 | MMMMM....must have missed it somehow, but what's the website address for EVA? I am a nonprofit management and fundraising consultant by profession (as well as a writer) and my sister lives in EASTON, too! I know she'd love to meet you...
Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)
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#17616 06-20-2005 09:43 AM | Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | | OP National OC Advocate/Speaker Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 30 | Bellarte, Who is your sister? MMMMM...a writer? I've been looking to connect with someone to write my book, my story... www.EvaGrayzel.com Eva
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