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#68242 01-23-2008 09:43 AM
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rosie Offline OP
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Brian and all,

I have started this new thread to eliminate the confusion I caused in the earlier one. With only 9 days left, we need as many people as possible to see this. If you participate, please mention it here, so the thread stays on top.

The Sunday News Magazine, Parade and The Case Foundation are hosting a Charity donation Challenge. The charities that have the MOST PEOPLE DONATE will get an extra $50,000 from the Case Foundation. I believe it is only the top 4 that get the $50,000, so we need everyone's help. This challenge ends on JANUARY 31, so time is of the essence.

Please pass this on and get as many people as you can to donate - the minimum is $10 and it is the NUMBER OF PEOPLE THAT DONATE THAT COUNTS, so $10 is fine. You can make a BIG DIFFERENCE for just $10.

To donate, go to:

http://www.networkforgood.org/pca/Badge.aspx?BadgeId=110252

You can pay with a credit card or PayPal.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Hey, I just sent my donation...very easy and glad to be able to use PayPal...!

Thanks OCF for all your support these last few months..it was time for me to "pay it forward."

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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I'm not sure but I think I donated twice. I wonder if I will count as 2 people?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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rosie Offline OP
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David,
Sorry, but no. They said only one donation will be counted for each person. I would assume a husband and wife could each donate if they did it separately. And someone could donate for a parent or someone else who didn't have a credit card or PayPal. But you would have to set up a separate account in their name with a separate userID and password.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Yeah I thought it was to good to be true when all my account info came up without me having to retype it in. They took my money though. LOL I should have tried to do it in my wife's name but I bet they key off the e mail address. I'll try using another e mail and her name. I'll be back..


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Yes that worked, but they did kick me out when I tried to register my wife with the same e mail address so I just used a different one and it worked. I assume I could have done that with any name as long as I registered the name info and used a valid CC. There's more than one way to skin that butterfly.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I contacted them and ask about sending a check.. Never received a reply.. I have never had a credit card and never will. Why give away your money so someone else can live the good life? I would gladly send them a check.


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
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rosie Offline OP
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Jim,
I'm pretty sure they don't take checks. Do you perhaps have a friend or family member that you could give cash or a check to and have them use their credit card or PayPal account to pay it for you?


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Rosie,

I got your email and it is done. Couldn't have been any easier.

What a great idea!!!!!

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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rosie Offline OP
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Okay people,

So far, there have been 11 donations. Subtracting Brian, myself and my husband, that means there are only 8 of you that feel OCF is worth $10 to you.

Now, I know some of you simply can't afford it and some may be waiting until payday, and some access the internet at the library or workplace or a friend's house, but for the majority, if you can afford to pay for an internet connection, you can afford $10 to help OCF.

That's all I'm asking - just $10.

PLEASE! This challenge ends on Jan 31st at 3:00 PM. That's only 7 days!

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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I am really confused by this whole thing. Does our donation only count if it's done through a badge? When I saw the first post, I went to the site and donated to the OCF, through the Network for Good, America's Giving Challenge link. Does that mean my contribution doesn't count?


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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Ginny,

I am sorry and I apologize again. When I first read about this and saw that there were only 11 days left, I jumped the gun and rushed here to post it on the forum without reading all the instructions.
I actually fully expected that someone else here would already have started an effort, and I wanted to bring everyone's attention to the fact that if they hadn't donated yet, they only had 11 days left to do so.

Anyway, no, your donation through the first link doesn't count toward the $50,000. It does, however, go to OCF and I thought that it counted toward the lesser prizes of $1,000, but I'm not sure about that now.

Again, I am so, so sorry that I messed this up. I thought that I had corrected it in time that only a few people had donated through the wrong link. I sincerely hope that not too many did.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Rosie,
Just made my 2nd donation. My first was before you had your badge. Sure hope it also counts.
Linda


Husband diagnosed 2/9/05 SCC Larynx (piriform sinus)Stage IV,T4,N1,MO
cisplatin/5FU 3/21-3/25 & 4/11-4/15, began 39 rad 4/21/05 last rad 6/17/05, mrnd 10/7/05
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Rosie -not your fault, I think the website is VERY confusing in itself... I also did not figure out the badge thing until you wrote about it here....


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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rosie Offline OP
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Just kicking this to the top.

And one suggestion. If you want to give more than $10, how about splitting it between 2 or more people? For example, I did the same thing David did. Gave once in my name, then set up a user name and password for my husband and gave $10 in his name.

I plan to do the same thing for my son. He doesn't have a credit card or PayPal account, so I will use my third email address to set him up for a $10 donation and will use one of my credit cards. That makes 3 separate donations. Remember, it is not the size of the donation. It is the total number of different people who donate that counts.

I plan to do the same thing for my mom. She'll give me the cash and I will set her up with a separate user name and use my card to pay. I'll have to open another yahoo email account first, though. As David said, I think the email address is how they determine it is a different person.

C'mon everyone, jump on the bandwagon this weekend. Let's get those numbers up!!!


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: Oct 2002
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rosie Offline OP
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Well,

I'm a really lousy cheerleader - there were 2 new donations in the last 2 1/2 days. Only 2.

I think I'll go crawl in a hole somewhere and leave you all alone now.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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It was a noble try Rosie.... welcome to my world.


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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Brian,

You are a much better person than I. I would have given up long ago. I commend you for your perseverance, dedication and sincere desire to help people.

I know there are many here who do appreciate you and your efforts, but the majority of these people just don't know how fortunate they are to have you. If, and I'm sure you know it is a big if, I ever finish that darn book, and if I'm fortunate enough to actually sell any, you know OCF will be given a percentage of any profits. At this point, however, the profits will not be given with any desire to help people in general, they will be given to help you, because I still believe in you, although I have just about lost what little faith I had left in people in general.

I know one person can't do much, but I will continue to donate at least once or twice a year. I will continue to go through this site every time I buy from Amazon.com. I might buy a T-shirt from time to time and will probably get brochures to place in medical/dental offices occasionally. And I have named OCF in my will. Not for a huge amount, as I do still have 2 children, 3 grandchildren and a husband to think about, but OCF is named for a modest amount. Of course, that is one amount I hope you don't get for a few years yet. wink

I just find it incomprehensible that the survivors aren't more grateful and willing to help. For those of you who don't know me, my daughter did not survive. She has been gone for more than 4 years now, but I will never forget the help we received from this web site. The site in general, and the forum in particular, were my lifeline. I could not imagine going through what we did without the information and support that we received here.

I remember when the mucous was so thick that Heather couldn't lay down and sleep for fear of choking. Joanna gave us the tip about putting rolls of gauze in her mouth to soak up some of the gunk. Gary and some others had great advice on how to get the constipation under control. Nettie Poho from Ohio (I think that was her screen name) reassured us when Heather developed the fistula. Someone else had invaluable advice on keeping the PICC line rinsed thoroughly to prevent clogging. And the person who recommended the portable suction machine was a godsend. We used the heck out of that machine. When I speculated that we had made a mistake by not going to a major cancer center, thinking that concurrent chemo and RAD would have been a better treatment option, Glenn from New York (also now gone) assured me that Memorial Sloan Kettering was not offering a chemo/RAD regimen at that time, which eased my guilt quite a bit. The list goes on and on.

I don't visit the forum much anymore, because quite frankly, it is painful. It is not only painful to read about those who are suffering, because it brings back vivid memories of Heather's suffering, and painful to read about another person being lost to this disease, but it is also painful to read about those who have survived, because I then question why. Why have you people survived, when my daughter didn't? And then, to know that you have survived, and supposedly benefited from the support found here (otherwise, why would you still be coming to this site), but realizing that you don't even appreciate the help you have received enough to cough up a measly $10. $10 stinking dollars.

It is now and will always be incomprehensible to me how people can be that way. And I know I am coming across as a pompous ass. And I am not usually that way. I am the type of person who gives everyone the benefit of the doubt. I believe in second chances. I believe in the basic goodness of human beings. I am generally the last person to condemn someone for his/her actions. I'm the one saying "Wait, let's hear both sides of the story. Give the person a chance. There's a bit of good in everyone. etc, etc, etc."
But I am having a real hard time doing that now. I just can't believe that the majority of you can't scrape up $10. Do you have any idea what $50,000 would mean to OCF?!? Obviously not. You must think it only takes pennies to run a website, pennies to print thousands of brochures, pennies to educate dentists, pennies, pennies, pennies. Well, I for one, don't believe any of you are that naive. And if you're not naive, well, at the very least, you are ungrateful, and I can't print the rest of what I think.

I apologize to the people who donated through the first link. I know there were a few of you, and I'm sorry your donation didn't count toward the $50,000 prize, but given the minimal participation, I guess it really didn't matter much. At least OCF does get the money that you donated.

I'm done ranting for now. But I'm glad I got that out of my system. Now, you all just chew on everything I said for awhile, and if any of you have a conscience, go make that donation. You have until Jan 31st @ 3 PM. We don't have a snowball's chance in hell of getting the top prize, but there are still the $1,000 prizes to try for.


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Rosie,
"Words from the heart enter the heart." Your posting should certainly inspire others to contribute, if not to this campaign then to OCF in the future.
Please do not blame yourself or anyone else for the slow response to this appeal. I have been involved in fundraising and have found that how others respond can be surprising. Not everyone is fast to answer an appeal. Perhaps some here are waiting for the next check or have not had time to analyze their accounts. Also, this is a very short term appeal. Perhaps others have also made provisions for OCF in their wills and consider that their contribution.
One day last year I picked up 2 grandchildren from school. They had just received information about a read-a-thon to raise money to get books for the school library. This was also a matching type campaign as the money raised bought books at a much less than wholesale cost. My 11 year old grandaughter asked for my cell phone and was calling family members and friends as soon as she got in the car. She asked for pledges for herself and for her brother. Between calls she said to me, "It's not like I'm asking for myself, the school needs the books."

When I gave the information to a friend who is a social worker in an agency she thanked me and said she would pass it around at work.

Malka

PS: I have added the link to my signature.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Rosie, as long as you can say I gave it my best shot. Not much more a person can do. We know you did your best and luv ya for it.


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
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Rosie,

I know this is a late response but I do hope the 2 you mentioned above had my name by one. I also want to say that to this day I still tear up just hearing news of the Green Bay Packers. It reminds me of Packer but it also reminds me so much of "the little hayseed from Wisconsin" Danny Boy. I then think of you, Heather, Las Vegas...and on and on and on. I can hardly go to the south side of Dallas because my heart still aches for Lynn and her darling little daughters. I then go home, I buy a shirt for someone that I know has battled some form of cancer. I try to drop chump change to OCF thinking in my mind that I am making a difference somehow. I have had 5 people tell me this past month that they asked their dentist if he/she was qualified to do a ADA approved oral cancer screening. I set up a booth at a health fair and I had 2 people that asked specifically at the door where the Oral Cancer Foundation booth was. I also had a gentleman take my name and ask me come to a health fair in South Oak Cliff. This is where the highest risk people would live and not coincidentally, the highest crime ridden area of Dallas.

I am taking a volunteer Hospital Chaplain class Tuesday nights, teach US Citizenship classes on Wednesday night, teaching English classes on Thursday nights and chairing the Missions Committee at our church which is one of the larger ones in our community.

People, let me jump on the bandwagon with Rosie for just a minute. I can find time, skip a lunch, do something that I feel makes a difference. I will never be able to truly give back to Brian Hill what he has given to me but so help me God (yes the unsolicited religious reference), I will do at least the small things that I can as long as I am breathing.

Skip a latte or a meal once a week and send the money to OCF. If you are reading this, you have been affected by oral cancer in some way.

I am on here today because yesterday (3 times total) my wife heard a PSA on the radio station for the Oral Cancer Foundation! It immediately brought me here to my old neighborhood where I left a part of my heart on many occasions.

I love all of you but love does not pay the bills!

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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Note: This is not an April Fool's Joke. I repeat, this is NOT and April Fool's Joke.

It is, however, the first of yet another month. Today I gave another small, paltry sum of money to OCF. I also sent people for cookbooks, shirts, etc. and I am buying my wife a bag.

Please, folks, do your part. If you saw someone out of gas on the side of the road, would you help them. Please support your neighborhood before it runs out of gas.

Thank you.


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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No amount is paltry. It is only when we all come together as a community that this works. I thank those of you who routinely send a few dollars to OCF. None of this happens for free, and lots of small donations all add up to paying the bills each month. Re the new bag... it is just a simple canvas bag. You might be able to find one like it for 10 or fifteen dollars out there. But the purchase of this one for a few dollars more will keep this message board open. I recently looked at the financials for SPOHNC who to my knowledge has not done a fraction of what OCF accomplishes each year. They take in 7 figures plus a year in donations, and have a running balance of over a half a million in their account. This is all public record. The difference is they work hard at raising money. To many organizations this is a major part of how they spend their time. Perhaps OCF should spend less time doing the mission, and more working to get people to make donations. For myself I freely admit that it is something that I do poorly, and given a choice of spending my time working on the mission or raising money, the latter always comes in second. I just assume that if people come here, get something of value they will leave something in the kitty on the way out. Those of you that have, have my sincere appreciation.


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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Brian, I'm with you on the fund raising. I would much rather be out there advocating and training my colleagues about how do to a thorough oral cancer screening.

However, this is the time of year that I do what does not come naturally to me...getting sponsorships for the NYC walk.

I think that the country's economic situation is going to affect my fund raising this year. Although there are still 2 1/2 weeks to go until the walk, the donations are coming more slowly than the last 2 years. I know I shouldn't take it personally, but it's hard not to do so.

Looking forward to seeing you on the 19th.

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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To any late readers of this thread, the donation badge mentioned in the beginning of it has expired. Anyone that wishes to donate to help OCF needs to do so in the OCF store. Thanks to all those who did respond to Rosie with a donation.


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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