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minniea Offline OP
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Hello Everyone,
The walk will be on April 9th, 2005 in Chesapeake, Virginia. Lot's of board members are coming so I'm excited!
I have a project for anyone that is willing to take it on, one that would create a wonderful keepsake and one that would make money for OCF. I did this years back with my cheerleading group. I would like to have each member of the board send their favorite, most cherished recipe, with a note on it of who they are and what and why the recipe is special. Then I am hoping someone on here will be able to find a printer that will make up cookbooks for us. We raised tons of money with this and I still have my copy and use it. Anyone want to take this on? Let me know.
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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Minnie:
I'm new to this group. My husband has BOT cancer and is just beginning treatment. Can you tell me where I could get more information on this walk? I would love to be able to participate, depending on Dan's condition, but if I can't perhaps our kids could walk. We live in NC so we are fairly close. My oldest is in Roanoke. Thanks for any info, and I will keep my ears open for printing resources for the cookbook.....GREAT idea.
Thanks,
Michelle


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Minnie,

I wouldn't mind receiving and organizing the recipes, but I doubt I could find a printer to do it at a decent price. I'm in a rural area with just a few small printing businesses. I will ask them, but I don't expect a favorable response, especially since they wouldn't receive any advertising from it, being we're not anywhere near Virginia Beach.

Do you have any idea how many you would want printed or how many pages you would expect it to have? It would be nice to have some idea what I would be asking for when I go begging at the printers'!

Do you think it would be possible for one of us to do it on a home printer? Was the one you did previously a nice professional looking book? I know some I have seen locally have been nice, but they weren't a real glossy, super spiffy book. You could tell they weren't professionally done, but they still sold well.

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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minniea Offline OP
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Hi Michelle,
You are close, I know a few people in Raleigh from the cheerleading world. There is a pretty good gym there, Impact, that has coaches I have known for years. I would love to have you or your kids come to the walk, Brian is in the process of putting up a page on the site that will be designated just for the walk, with all the information. We're hoping that this walk will be a model for others to do one in every state in the country within the next few years. I also have older kids and they would welcome your children being here. My husband was born and raised here and used to spend some summers in Roanoke.

Rosie,
It would be such a help if you would organize the recipes. I am going to start contacting some printers in my area, offer them free advertising if they print for free or at least a killer discount. The ones we made were printed by a company but were not some ritzy looking book. It was a spiral bound book, not hard cover but not thin paper either. It was middle of the road. We had each girl take home a sheet that had room for the recipe and also on the bottom the parents and childs name that sent it in. I love seeing my name with my daughters name in this cookbook with a recipe for cookies that she has loved her whole life. We sold the books, and this was about 8 years ago, for $5.00.
I'll let you know what I find out, everything is closed tomorrow but I will start on Tuesday.
Thanks for the offer...........come on everyone, send in those recipes!!
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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Minnie,

Assuming that no one else wants the job of organizing the recipes, do you want people to start sending their recipes directly to me? If so, they can be sent to me either by email or snail mail. I can at least get this project started. If someone else wants to help or even take it over later, that's fine. I won't argue! Seriously, I'm sure I can do this, but if there is someone who is experienced in this type of thing, I certainly wouldn't argue if they wanted to do it. After all, we want the best cookbook possible!

If the recipes are coming to me, my email address is:

[email protected]

Postal address is:

Rosemary Michael
7372 Spring Rd
New Bloomfield PA 17068-9324

Let's get cooking! laugh
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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Hi, all. I think the cookbook idea is great. As for a printer, I suggest we look at CafePress.com . They enable companies, groups and individuals to create and sell a variety of custom products from books, to coffee cups, to bumper stickers to buttons. And the best thing is that they makes them one at a time, as they are ordered. There is no need to print 500 or 1,000 copies and hope you can sell them.

I've been involved with a couple of not-for-profits that lost a lot of money on books. They thought they could sell thousands and ended up selling just a few dozen. That's why I like CafePress.com. (I have no connection to the company, but I've been researching them for another organization.)

Just a thought.

Ken


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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Great lead, Ken.
Minnie, I will check with the printer that does the work for the bank - - maybe I can get a deal.

ALSO......in order to 'get the word out' in my community (beginning on a small scale with co-workers), I have begun a 'personal bake sale.' I've got a good reputation for baking, and last week I accepted orders for 6 quiches for Friday delivery. OCF is $82.00 richer smile Though I will not be able to do anything this week, I've already got orders for the following. Hmmmm...10 more weeks to go before the walk. Wonder if I can bake $1000 worth of quiches?!?!?!

Love
Nicki
I've got a few irons in the fire for sponsors, Minnie. I'll be following up next Monday smile

My son is heading to Iraq Feb. 7. The powerful prayers from this group for his safe return home will be gratefully appreciated.
God love you all.
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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Nicki, I will pray for your son's safety. My nephew left for Kuwait last month, he will spend several months there and then go on to Iraq.
Your quiche and bake sales sound awesome! What a wonderful idea to raise money for OCF. God Bless! Love, 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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Nicki, prayers for your son while he travels to Iraq and while he is there as well as his return to his family.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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Nicki
The world watches, but we wait with you..
Sunshine...love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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Hi Minnea,
I would love to volunteer my services in assistin you with you cook book.
Please tell me how far advanced you are in this project. I wrote you before in asking to help you with the walk, but I never heard back from you. I am available and would love to help in anyway I can. I am an owner of a dental lab. I have a mail order business, and
I have been in touch with Brian who has sent me brochures to send to my accounts. I am trying to inform the dentists about Oral Cancer and hoping they will make a donation to the Oral Cancer Foundation.
Looking forward to hear from you soon.
Rosalie Stern Oral Cancer Survivor Oct 2002
Thyroid Cancer 2003

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Dear Rosie,
I am not sure if you remember me, but I used to write to you when I was diagnosed with Oral Cancer in 2002. I was so sorry to hear about the loss of Heather. I had written to you about her many times during her illness.
I would love to be involved in helping to make the cook book.
Rosalie

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Hi Rosalie,

Yes, I remember you. I remember writing to you, but you dropped off the board for awhile and I got so busy with Heather that we lost touch. I am glad to hear that you are doing well.

As far as the cookbook, I have only had one reply to my request for recipes to be sent, so I don't have much hope that we will be able to do it. I need to write to Minnie and see what she thinks. I know we have a few months yet, but I certainly don't want to be trying to put it all together at the last minute. I would appreciate the help if this ever gets off the ground.

Thanks,
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, I don't have any of my own recipes, but Church put a little cookbook together a few years back, I can certainly email some of those if that would help. Thanks, 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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Hi Rosie and Rosalie,
Rosalie, sorry I didn't get back to you, I'm usually good about returning emails and am not sure why I didn't respond to your offer to help.
Rosie, please use your judgement with the cookbook, if you don't think it will take off then we can drop the whole idea. Rosalie, if you have any ideas about how to get it jump started, let us know. I am up to my ears trying to do all that is needed for Brian so this walk will be a success in April, plus will be having some surgery in less then two weeks. So, I won't be able to do the cookbook. It was just a thought and won't be looked at as a failure if we don't get it completed.
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.
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Hi Minnie,

I hope your surgery is something minor and you sail through it with ease. I did get 2 more replies, but I think I should start a new post with "OCF cookbook" or "recipes wanted" in the subject line to get peoples' attention. I have a dr's appt tomorrow, but as long as it turns out to be something minor, I should be able to get a post up in a few days. I'll see what response we get to that and then take it from there. Good luck with the surgery.

Carol,

Certainly a recipe or two from your church cookbook would be fine. I think the idea was to send a favorite recipe, something you make often or maybe a recipe for special occasions. Any recipe that has a special meaning for you. As an example, I will be using one from a little cookbook that Heather's class put together when she was in 5th grade. Her teacher had each child bring in their favorite recipe. She typed them all up in a little booklet with a construction paper cover that the children had decorated. Then each child gave one to their mother for Mother's Day. I will be using the recipe that Heather contributed to that book. It was special to me then, but obviously is even more special now that she is gone.

I realize not everyone's recipe will have that kind of significance, but it doesn't have to. It can simply be that one recipe that you always get asked to bring to family picnics because everyone loves it so. It can be the first recipe your child tried to make on their own. Actually, I have a funny story connected with Heather's first attempt to make supper on her own one night that I was working late. I think I may include that, too. It has to do with a creamed chipped beef recipe that she accidentally used confectioner's sugar in instead of flour! (I obviously didn't have my cannisters marked.) She couldn't understand why it wouldn't get thick. One taste and I knew why! laugh

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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Hi Rosie, I thought about it and I am going to get a recipe from my Mom, it will be special to me cuz it is something my Grandmother always cooked for me! Thanks so much! That is too adorable about the cookbook from Heather's fifth grade class. Thanks for sharing. Love, 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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Rosie-
I too will be sending you some receipes. Just a little slow with year end accounting. Will have them to you by the end of the week. A new posting subject would be a good idea! - 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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Dear Rosie,
I enjoyed reading your story about Heather's cooking experience. I really felt a connection to you and Heather when I first started to e-mail you. Thank you so much for sharing precious memories with us.
Has anyone voluntered to put the cookbook together? I can send you recipes. I have quite a few. The recipes that I have are mostly comfort foods. Please let me know if we should move forward with the cookbook idea. I would love to help. I am not sure what is involved in making a book.
I hope your Dr.'s appointment went well.

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Dear Minnie,
I hope your surgery goes well. I will be thinking about you and also hoping that you sail through it with ease.
Minnie, I want to make reservations for the Oral Cancer walk. Should I make them now. Please tell me the names of hotels I can call.
Is there anything I can do to help you with organizing the walk. Please let me know.
Rosalie

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Hello all,

Thanks for the replies about the recipes. It probably isn't essential that I receive the recipes right now. But it would be good to know how many will be coming. If more of you can do as Kris and Carol have and just let me know that you will be sending some recipes later, I can at least get an idea if we will have enough to proceed.

We still have to find a printer that will give us a good deal. Or, if we decide to use CafePress, I would definitely need an idea of how many recipes we will be getting, so I can get a cost estimate and decide if it will be worthwhile.

Rosalie,

I'm not sure what you can do to help because I have never put together a book before either. Right now, I'm just sort of winging it and hoping that I can figure it out as I go along. If anyone out there has any experience in this kind of thing, I would appreciate any tips or guidelines. I'm flying by the seat of my pants here folks, so ANY tips would be helpful. How many recipes do you think we will need to have to make this work? I have tons of cookbooks, but not any from a small organization, so I don't know how small the book can be and still be saleable. Do you think people will buy it no matter how small because it is for a good cause? Or is there a minimum size that is acceptable? How many of you have cookbooks like this from non-profits? How many recipes do they contain? Just looking for some ideas and opinions.
Maybe I will try an internet search and see if I can come up with anything.

I will post this in a new topic soon. The appt went pretty well. I think since I hit 50, I've just slowly been falling apart! Need to get back on track with a proper diet and exercise and I should be fine. Of course, a little sunshine to lift my winter blues would be helpful, but unfortunately I'm stuck in gloomy, dreary PA, so there's not much hope of that happening soon. Just can't get that husband of mine to move somewhere with a shorter winter. Drats!

g'night all, wink
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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Hi Rosie,
I think we should aim to have about 40 recipies in our book. We could also sell it to people who attend the walk. I'm not sure of the expense involved in binding the book. I would like to run it by Brian. We could have a section for soups, dinners, and desserts etc. How does that sound? I think people could gather information about the book on the oral cancer web site. We could also use the site as a way for people to purchase the book. Perhaps, we can put book proceeds towards further developing the web site/foundation. Maybe we could do an introduction for instance in Honor of Heather and include your story about Heather in the intro. I think having Heather's story in the beginning of the book would mean so much so many of us. If anyone else had a special story like yours, we could include those as well. Just thought I'd share some of my ideas with you....let me know what you think.
Rosie, I live in Elkins Park which is in the suburb of Philadelphia. I am so sick of this cold weather too.
I am going to Hawaii February 26. I am counting the days until I go.
I am happy that you had a good Dr's report.
Talk to you soon.
Rosalie

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minniea Offline OP
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I think Rosalie has a great idea. In fact, perhaps a small "intro" on each person giving a recipe would be good. Think about it, if all of us gave a recipe and added in there how we found our oral cancer, how it was treated, it gets more information out to anyone that buys it about oral cancer. We could also add the recipes that worked for us during treatment and after.
Perhaps we could have a "In Memory Of" section for all of our lost friends. Dedicating the book to Heather is an incredible idea, I do hope Rosie will allow it. My older girls feel like they know Heather. Her story is the first story that made us cry.
Good ideas from both of you, thank you for taking the reins on this. I'll send my two favorite recipies this week.
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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Visit oral cancer events off of the main nav bar for information that we have to date


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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Hi Rosie, A few years ago my first wife put togther a family cookbook of old family recipies that we were afraid would get lost. You know, like the favorite dessert or dish that grandma made and your mom knows but you never learned... Still use the copy I have for my favorite dinners and cooking bible. Did the printing and binding at Kinko's, not all that cheap back then. Also this was done on a XT class computer (remember those) on a DOS based program and printed on a 16 pin dot matrix printer.

Probably for a good example try the local tourist trap gift shop, there's usually some women's group or another that's put out some sort of cookbook of the type you're talking about. We used to collect cookbooks, and have quite a few of that type. Unfortunatly all in storage now. I would think that with all the people from the various areas of the country you shoudl be able to get plenty of recipies.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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Rosie,
I am going to type my recipes today (Sat.) and I will send them to you on Monday. I haven't heard from you. Do still want the recipes sent to you?
I would take it over for you, if you do not feel like doing it. I just want to help. Please let me know one way or the other. Hope you are feeling well.

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Rosalie,
I'll send you an email and we'll chat about this cookbook.

Bob,
Thanks for the ideas. I do have a couple of that type cookbook myself. Just wasn't sure what size would be small enough to handle for a first-time project, but big enough to have wide appeal. I originally offered to help sort the recipes into categories. Figured I could check for spelling and completeness, etc., but didn't plan on heading the entire project as I have had no experience in this. I really am winging it and all info and ideas are appreciated.

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 really don't think we have enough time to put this together for April and 40 recipes sounds like about 100 too few. I have 5 pages that were pulled out of a book the lake put together and here are 23 recipes on those 5 pages.

I think you are also talking about two cook books with different purposes. Family favorite recipes will probably sell. One of the problems with my family recipes are the ingredients usually are not precise, the timing is according to the nose, etc. I also have a lot favorite recipes, but they are out of cookbooks, many out of print. I don't think we could use these because of copyright infringement. I think family favorites from around the world be interesting.

I have long thought that it would be a good idea to start a thread of foods and recipes that patients were able to eat after radiation along with how many weeks or months after tx this worked. If we got enough of these, we might turn it into a cookbook, but I doubt anyone other than oral cancer and sjorgens patients would be interested in buying it.

Anyway, That being said,Rosie, I will email you a couple of my family recipes. I can't type worth beans, so proof read them.

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
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Hi Eileen,

I agree with you about 40 recipes not being enough. I just contacted Rosalie a couple days ago and said much the same thing. The smallest of my non-profit cookbooks has well over 200 recipes, so I figured 100 would be the absolute minimum for a very small cookbook. If we had special anecdotes to add to most of them, that would make not only a bigger book, but also a more interesting one, but so far, I haven't received any recipes with stories attached.

I did receive your recipes. Thank you. Given the amount of recipes I've received so far, I'd say this probably won't be a go for the April event, unless we revise our expectations and do a small cookbook as a trial run. If it is received well at the Va Beach walk, we could then do a full-fledged version later, possibly to be sold on the OCF website, as well as at other fundraisers. I do believe the original idea put forth by Minnie was for more of a keepsake. Having a personal story attached to each recipe would make it special to the OCF members. I don't believe it was meant to be a commercial project. So I guess we have to decide exactly what it is we are trying to accomplish. A keepsake which would be cherished by OCF members and hopefully would bring in a few $$ for OCF? Or a larger book with broader appeal that would hopefully bring in more $$ for OCF, but would be a much larger undertaking and definitely one that would not be ready for April? What do you all think?

As I stated before, I have no experience with this sort of thing and I did wonder about the copyright issue, as the recipes I would use are also out of other cookbooks, albeit some are revised slightly, but they are still not original recipes concocted by me.


I hate to bother Brian and I don't have any lawyer friends, so if there is anyone who knows copyright law and could chime in here, that would be a good first step. I know most of the non-profit cookbooks I have use recipes from other cookbooks, so maybe there is a special rule that applies to non-profit groups. Or maybe the non-profit groups that do the books just unknowingly violate copyright laws?!?


Thanks,
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 agree with you about postponing this project for a future event. To do it right it would take sometime and April's walk in Virginia is just to soon. My two cents worth.

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
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
In my humble opinion I think it might be best to postpone our cookbook, too. I think it is a wonderful idea and I would like to contribute to it. But trying to get it done right and out by April sounds like a lot of work in a short time frame,unless we do the small version. Let me know if I can help. Thanks Rosie, 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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