#12271 09-26-2007 09:57 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I am right there with all of my dear friends, in tears when I saw this site. I spent some time in th ER with a bug I caught and dehydration so slept many hours after coming home. When I came downstairs, there was a post it note on my computer screen with the websites address.......and I think I lost all the fluids they gave me at the ER in tears. How can one woman be so very blessed. I am just a simple woman that has never done anything out of the ordinary, yet here I have something so extraordinary. God is certainly good. The website is working for us, the support is overwhelming. We have a local business right on the strip (Va. Beach) that is letting us take over their Happy Hour from 3pm-whenever on Sept. 30th and already we have throngs of people coming. They are going to donate every penny of their proceeds for that evening to our fund. We also had a $5000 donation from a local business man today, which boosted everyones spirits greatly! We are calling tomorrow to set my surgery from the 4th to the 8th, we're worried we won't reach the goal so are buying ourselves another weekend. Amy, I LOVE, LOVE, LOVE your idea of putting our insurance companies name in bold print on the site. It's Anthem Healthkeepers of Va. for anyone that would like to know. We also had one person advise us to make some signs and take all the girls and grandaugthers down to their local office and picket. He said it WILL bring the news cameras. So, we're considering doing that. My husband also is talking to a lawyer about our rights. We have free tshirts that have been printed up and dontated to us, beautiful ones. Banners to put up, just everyone pitching in to help. Human nature should never be doubted! Thank you from my heart to you that have donated. What you give me here is priceless, the friendships, the understanding, etc. Much love, 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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#12272 09-27-2007 10:29 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Minnie,
Come on..."a simple woman who has never done anything out of the ordinary". Where do I begin about you NOT being and simple woman. Raising 7 beautiful, caring and loving daughters (with some help from your hubby). From what I can tell, you are the best coach in VA.
And lets not forget your contributions to the OCF. Your advice and support of our members is appreciated by all. You are always there with words of wisdom and loads of help.
I will stop now before your head swells too much.
Remember, Christmas is just around the corner.
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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#12273 09-27-2007 10:56 AM | Joined: Aug 2007 Posts: 6 Member | | OP Member
Joined: Aug 2007 Posts: 6 | Mother Dear, you are in no way ordinary or simple. You have been extordinary since the day you were born. You are an amazing role model not just for your daughters, but MY daughters, too. If we all turn out to be half the woman you are we will be amazing.
Thank you everyone for your support. The web site is helping and local businesses are starting to pitch in more and more every day!! When this family of ours has a mission, watch out!! I think we might scare people a little!! lol.
Love,
Charity | | |
#12274 09-28-2007 04:40 AM | Joined: Jun 2006 Posts: 82 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2006 Posts: 82 | Great idea. I do a fair amount of fundraising at the college I work at and I have also found that it is always motivational to let people know how much progress has been made towards the goal.
In any event, your family is very inspirational. A true meaning of "in sickness and in health".
DX on 05/01/06 with SCC of right tongue. 05/11/06 surgery-tumor 1.2cm & 4 cm clear margins & parital glos. & neck dissection with removal of 34 nodes/1 positive at 4mm)T1N1MO
35 IGRT & 3 cycles of chemo (1 cisplatin & 2 carbo-complete on 8/9/06.
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#12275 09-28-2007 05:05 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 | MammaMinnie and the Girls!
All of you have been an inspiration to me and when I search for more service opportunities I often think of each and every one of you. Your family is the epitome of what we are all trying to do and just like Jesus tried to teach me, I have fallen so short in so many ways.
I have shared your stories over the past 4 years with so many people and you have now given me yet another chapter that tells the story of sacrifice, love and bringing honor and glory to His kingdom and in a glorious way.
It is and has always been an honor to say I know you! May your miracles be abundant and may the blessings continue now and forever. I truly know you are Christians by your love.
Now, go and get some more national publicity so these insurance companies won't take advantage of all of us oral cancer patients. I am so tired of hearing the excuses and fighting every step of the way. I didn't ask for any of this but we all need a little help from the insurance companies.
You go girls!
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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#12276 09-28-2007 09:20 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Minnie and Girls !!
Good LUCK !! I too tell your story !!! I would love to do anything I can to help . Maybe I can post somthing in my staff room at work ..People are in shock over the Ins co. I explained to them that they Have no Idea what it is really like dealing with them ..it is one thing to deal with them when we get a cold another when we have a life threatening illness. SOOOOO I wish you all the best of luck
And Minnie I agree ..far from simple..closer to extrodinary !!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#12277 09-28-2007 10:51 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Minnie,
What a beautiful website. Your gals have talent.
I agree. Put the name of the lousy HMO on it. You would think they should be required to at least cover part of it out of network or cover it to the extent of what it would cost had you had the work done in the hospital they are recommending.
Hope you raise a bundle Saturday night. Good luck
with your surgery.
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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#12278 09-28-2007 07:59 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Jerry, you said the magic words.........Christmas is right around the corner. You have no idea how that has become like a marker to me, a timeline of some sort, I can't explain it. All I know is that me and the girls talk about Christmas everyday now, it makes them feel good and it makes them feel safe to make long term plans like that. So, see you in New York my dear friend!
To all of you on this website, the support we give each other is priceless.....let's all count how many times I've written that, lol! Guess I need to come up with something a little more original. I love coming here and reading what you guys write to me AND to others. I also feel good giving back.
My surgery is a definite go for the 4th, I'm anxious, scared and raring to go.
Love to all,
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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#12279 09-29-2007 03:28 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Minnie ,
I try not to assume anything ....But if you are referring to me ..as far as NY you .let me know the date and I WILL SEE YOU !!!!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#12280 09-29-2007 11:45 AM | Joined: Sep 2007 Posts: 13 Member | | Member
Joined: Sep 2007 Posts: 13 | I was so touched when I read your website! The love, support, and respect you have for one another was inspirational. I wish you the best of luck!! | | |
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