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Hello. We are getting this newsletter out a little later in the summer than we had planned. We have been holding off because we are in the process of setting up our first Women Re- Hooked event - YAY! - it will take place in San Diego, California in September. More details to come further on in the newsletter. So when I last wrote to you it was Spring and we had had a very busy few months. Since, things have slowed down a bit because I decided to take some time away from traveling and focus on where I want this project to go in the future. This is what I have come up with:
First I should mention that I am just over 5 months pregnant with baby #2 - a boy! We are so excited but it has also forced me to put things into perspective in terms of what I will be able to handle in my life once I have this baby. Come November I will have 2 children 22 months apart (having the genetic mutation for breast cancer and needing to have my ovaries out kind of dictated their closeness in age - I am sure many of you reading this can relate). Therefore since M:TA is a small operation with me being the main force I think it is realistic for me to continue with the project, but there will need to be some changes. The biggest decision we have made is that come 2009 I will not be traveling very much. I have loved the opportunities to speak with different groups so this was a hard choice to make. I still hope to pop into a few cities and put on Women re-Hooked events because I feel so strongly about a woman's reconstruction not being complete until she has the opportunity to be fitted into a new bra that compliments her new shape. I love our new program and I intend to remain a part of that. I will still travel for speaking engagements in NC if my schedule allows. In general I just need to cut back on the hours a week I put into the project.
What I do still plan to do is network and advocate and try my hardest to get surgeons around the world to understand how important it is for women to be able to see real "process" pictures prior to undergoing tissue expander reconstruction surgery. I want surgeons to know that our booklets exist and I would like to see physicians' offices purchase the booklets as a resource for their patients. When we look over our orders we are still finding that it is mainly the patients purchasing the booklets for themselves as a result of doing their own research. That is all well and good but we think it would be better if the booklets found homes in hospitals, clinics, and physician's offices and were given free to the patients. I cannot tell you how thrilled we get when we see that a surgeon/physician practice purchased 20 copies of our booklets for their patients - to us that is a real victory! On that note I should also mention that booklet sales will not change. The booklets will still be available to purchase at Amazon.com as well as on our website at www.myselftogetheragain.org. Mailing the booklets to you and writing a personal note is my favorite part of this job!
So, to sum up, I am not ready to walk away from M:TA - not by a long shot. I hope by cutting back a little I will be able to be even stronger in my advocacy efforts and at the same time be a hands-on mom.
As always I will close my note by saying thanks to all of the people who have written to me over the last few months and thanked us for our site, booklet, and most importantly our pictures. We really do want to thank you for writing in and sharing what a difference it made in your lives to see the pictures - we are just so happy that this project is giving women hope. Please make sure that you also inform your physicians that these pictures helped you - that makes our job a lot easier. Thanks again for your kind words.
~Debbie
M:TA Project Creator & a young Breast Cancer survivor
Publishing Update:
We need to bring you up to speed about where we are in terms of publishing a book. When we last wrote our newsletter in the Spring the plan was to head to NYC and meet with the publishers we had been working with. Right after that newsletter went out we decided to take a few steps back and think about the content of the book. Early on we were just setting out to get our booklet published - in order to get it in more stores and have it be more accessible. Today, we are thinking a little differently. Many times when I have spoken at different events, people have approached me and said that I should put more of my story in the booklet. Women especially would share with me how touching it was to hear about my wedding post - cancer and it seemed to be even more inspiring for them to hear about my first pregnancy. So, we have decided to rethink just publishing the booklet as it is now and perhaps writing more, sharing more, and overall seeing if we can create a book that appeals especially to a young woman diagnosed with breast cancer. Fortunately, we have a writer who has stepped forward and is eager to do this work with us so we will just have to see where this takes us.
For Debbie it has been enjoyable meeting with the writer (Bonnie Rochman, the journalist who wrote the first article about M:TA in The (Raleigh, N.C.) News & Observer) and putting more of her story out there. It is important to the M:TA team and especially to Debbie that when it comes to putting a book together we stay true to what this whole project has been about - the breast reconstruction process and the pictures. So as we meet and determine the material for the book we also make sure that the pictures have a place in there and remain a focus. We will need to submit a proposal to an agent once our thoughts are more in order. So, if you know of an agent who may be interested in helping us with this, please email Debbie at info@myselftogetheragain.org. Thanks.
Women re-Hooked Update:
Women re-Hooked is our new program that we implemented this year. Our idea was to find places around the country where we could gather women (patients and/survivors) together and have an event in their honor at a department store. The purpose for the event is to hook women up with professional bra fitters in these stores and have women get new bras to celebrate the end of their reconstruction/surgeries and the beginning of their new shape.
Before we give you the scoop on Women re-Hooked: San Diego, we want to share what we have learned in doing our research. Debbie has a great relationship with Dillards Department store and they have wonderful bra fitters who have helped Debbie put on great events. But when Debbie was contacted by breast cancer patients in San Diego who wanted to have an event she was at a loss because there was not a Dillards near them. So, after several calls, Debbie got in touch with a Nordstrom department store in California and spoke with the manager in the lingerie department. Not only were they willing to host a Women re-Hooked event, they also shared with Debbie that they have a program set up with insurance companies and they will submit claims for women and send women out the door with free bras. WOW!
So, here is some information you should know if you have had surgery for breast cancer and are looking for bras/prosthesis (this information does not just apply to women who have been reconstructed- it may also apply to women who have had any type of breast cancer surgery which altered the breasts):
- Many insurance companies will allow you to have a certain number of bras per year at no cost to you. This also goes for prosthesis and breast forms
- We are not aware of any other department store other than Nordstrom that will do the filing with certain insurance companies. Debbie has not spoken with every department store out there but the few she has spoken with don't handle the claims.
- If you live near a Nordstrom you should contact them to see which insurance companies in your area they work directly with. In California I have learned that some companies allow you to get the bras free that very day through an account they have set up with Nordstrom, other insurance companies/Medicare will have Nordstrom file the paperwork and then you will be reimbursed.
- The best advice we can give you is to CALL YOUR INSURANCE COMPANY or MEDICARE representative and just ask what they pay for- you may be surprised. I do know that most insurance companies do need a prescription from your surgeon for a bra/prosthesis - that should not be a big deal.
We hope this information is helpful to you. We were thrilled to hear that Nordstrom makes it so easy for women to get fitted and handles the insurance aspect - we intend to keep a good relationship with Nordstrom and use them for re-Hooked events whenever possible
Women re-Hooked San Diego is taking place September 12th and it is currently full. If you are interested in us coming to your area and celebrating 10 women who have completed their breast reconstruction, please email us at info@myselftogetheragain.org.
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