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Joined: May 2002
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Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
Hi Minnie,
Sorry to miss this. Thanks for the time of the survivor lap. Will be out with my oral cancer cap on and thinking of all of you.

Still no clean up crew because no one will take the job unless I agree to rip out all the knotty pine cabinents and paneling. No heat, washer or dryer. Flood Insurance guy coming tomorrow. Covers absolutely nothing but washer, dryer and heater. I'll need the walk.

Have a great time guys. Wish I were sitting on that balcony in VA beach rather than dealing with this.

Walking with you tomorrow,
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
Joined: Aug 2003
Posts: 1,627
minniea Offline OP
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Joined: Aug 2003
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I had dinner tonight with Danny and Marcy Bogan, Tom and Nicki, Rosie and her husband, daughter in law and two beautiful grandchildren, and Barb (bobbi) and her WHOLE family! Barb has her mom, dad, three sisters and two nieces here and together they have raised $15,000 for the walk. That is NOT A TYPO folks..........15 grand for our foundation, how awesome is that? We will break $20,000 and I am so happy. More survivors coming tomorrow and we will be thinking about everyone when we do our lap at 1pm.
OK, here's the big question..........Virginia is bringing in approx. $20,000........who's going to take the challenge to top that and have a walk in their state???
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.
Joined: Jul 2004
Posts: 188
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Joined: Jul 2004
Posts: 188
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Way to go Minnie!!!
I got so excited by your news that I went right to the donation site and fulfilled my pledge to Danny. I decided on the spur of the moment to double it. I am so proud of you folks and what you are doing, words escape me. I wish I could be there with you.
Please accept my donation in your honor as a small token of my admiration.

Thank you for what you all are doing, and thank you Brian for this forum and the OCF's good works.

Good Health,

Chuck Feeney


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
Joined: Jan 2004
Posts: 1,116
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Hi Minnie, I totally enjoyed the Walk today, loved meeting you and everyone else. My husband had an idea on the drive home....I am going to the Relay for Life here May 20th, basically I walk the survivors lap and eat the delicious meal they serve. (SMILE) I have emailed my contact person about having an oral cancer booth, where I could distribute pamphlets for the foundation. I was wondering, if they allowed me, what do you think about me selling some of the tee shirts leftover for a small price and passing that money onto OCF? What do you think? Let me know. Love, Carol Thanks again for all you do!


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---
Joined: Apr 2005
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Hi everyone this is Amy one of Minnies daughters. I wanted to thank everyone who came out and those who couldn't make it today. Mom put alot of work into this and I am so happy everyone made it so sucessful. A few friends of mine that came were amazed by reading the literature. The education the people who are not close with a survivor recieved will hopefully be passed on. Now lets hit D.C. and work on the insurance companies!
The members of this board have made a huge difference in my mothers life. You have been there for our mother in ways we can not be. My sisters and i appreciate your friendship with our mother very much.
It was a pleasure to meet all of you and I look forward to next years walk!

Joined: Aug 2003
Posts: 1,627
minniea Offline OP
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Joined: Aug 2003
Posts: 1,627
Our first Walk for Awareness was a success! There if no final tally as we still have walkers that need to go collect from their sponsors but we made some good money for the foundation. Today Larry and his wife, Cathy, and Carol and her husband (why can't I remember his name!) got here and it was wonderful to meet them. Carol is alot taller then I expected but every bit as wonderful as I imagined. Larry was the down to earth gentleman I thought he would be. Some local survivors that I had not met before also showed up so it was a fulfilling day.
I've never done anything like this before so made lot's of mistakes but now we will know what NOT to do next year.
I hope that each and every one of you will consider doing one of these walks in your state. It's the ONLY way we will make a huge impact on this disease. The board helps people that are battling the disease, learning to live with the disease, lost someone to the disease, etc. We need to use our experience to help others that haven't entered our world yet to either STAY OUT of our world, or to enter it as one of the "luckier" ones with a stage I, easily treated cancer. We need to reach out to the people that don't know anything about our website.
Again, today was a day I will never forget. I was with people that know how I feel, know my darkest fears and inner anxieties, know how my world has changed. That feeling does alot for ones emotional health.
Take care,
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.
Joined: Aug 2003
Posts: 1,627
minniea Offline OP
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I love you Amy. Thank you for helping me today and understanding why this walk and these people are so important to me. My cancer had such an impact on your life. Leaving a college you loved so much after being there almost three years was a tough thing to do but you never considered anything different. Coming home here to help me and our family is just what I would expect of someone like you. Remember the night before my last radiation treatment and I was having my "breakdown"? I remember telling you how scared I was of dying and leaving you girls , that I wasn't done yet with all I wanted to do in life. You said it would be fine, I believed you, and here we are two years later. And I'm STILL not done!
Tomorrow we conquer the insurance companies!
Love,
Mom


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.
Joined: Feb 2005
Posts: 663
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Amy and Minnie,

I know someone who I will read this to tomorrow and your words will help. There is nothing more important than family and it is very appearant that you, Minnie, have instilled that value well in your daughter. Good for you Amy!!

Maybe next year when Harry is back on his feet we can come and walk with you. Of course my back will have to feel better than it does now. Yes, I turned around today and managed to throw my back out. I can barely walk and I am in severe pain but I am still taking care of Harry. He is still having a rough time but I tell him about all you say and it really makes a difference.

I am glad to see that you all got to meet each other face to face and I hope that these meetings continue for years to come!!

Best to you all.
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
Joined: Sep 2003
Posts: 153
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Joined: Sep 2003
Posts: 153
Good morning Minnie,

thanks for putting forth the effort that made for such a fun and successful walkathon. it was a real pleasure to meet you and other OCF'ers. i am always amazed at how much can be learned in a group setting of cancer folks, and yesterday was a great example... various operations and dental proceedures, but above all, the spirit to enjoy life... almost regardless of the circumstances.

it's great to hear Amy talk of next years event! and i agree with you that these activites will help to improve live for oral cancer folks. this really hits home with me as i've been to 2 funerals in 2 weeks for cancer folks from my local support group. it's been about 3 years since i joined that group, of the seven fellows in our original group, i'm the only one left. the photos at the walkathon showed some oral cancer folks that are departed too soon and others that are still with us. thanks for putting the photos on display... as i write this, i remember that i forgot to read some of Heather's journal... well, i should do that next time.

Your efforts and that of the OCF do make a big difference. thanks again. i plan to be at your walk again next year and hope to see lots of OCF folks there.

cu,
larryb

Joined: Jan 2004
Posts: 1,116
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Hi Minnie,
My husband's name is Steve....SMILE!!!!!I plan on being there next year too. I would like to take on a more active role if you want. God Bless you and your wonderful family. When I got home, I had another check from a sponsor, should I forward it to you or Brian? Ditto what Larry said about the photos on display. Thanks again Minnie, Love, Carol
p.s. I am 5'8" and you were much shorter than I thought you would be, SMILE!!!


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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