In Memorium: Ruth Grace Waldman Weiner, 1934-2012

On Sunday, February 5, 2012, my mother passed away. She was alone, meaning she did not have any of her family surrounding her. I always thought I would be by her side as I was when our dad passed away. At that time only my brother was away at college. But even he got to say goodbye over the telephone. Eric and I had seen her just that Thursday to bring her clean clothes. She was on her way for a shower and anxious to go. So we hugged and the CNA wheeled her to get cleaned up. She really enjoyed her showers and loved to feel the warm water run over her. She always said it beat the hell out of the brief bird bath she got every day. I talked to her Friday, Saturday and Sunday night. That was my last time, Sunday at my dinner break.

My husband Larry and I had just gotten home from watching the Super Bowl with our friends. We had settled in for the night and my son Eric arrived home from his father's. We were catching up on our weekend activities and rehashing the football game when the nursing home called to tell me mom had another episode of respiratory arrest, the ambulance arrived and started an airway and gotten her breathing again. Somewhere in the less than ten-minute ride to Jeanes Hospital, she stopped breathing again. Even though the ER staff worked on her for a half hour, she never revived. I had asked my brother Glenn to call the hospital and find out what had happened as he had the Power of Attorney. When he told me "she never revived" I was uncomprehending. I actually asked him if he was kidding. Of course he was not, our 77 year old mother was gone.

We rode over as soon as he could get dressed and went in with extreme trepidation. I was not sure what we would find. When dad died, he was in his hospital bed and seemed like he simply went to sleep with one last gasp of breath. Mom had already passed. Her eyes were closed and mouth was open a bit since she had an airway in. Her hair was messed up like she also had been in bed. Her color was very pale, her lip color non-existent. I took a breath for her. I was waiting for to hear the all too familiar snoring. I looked for her chest to rise and fall. I could not believe it was real, that she was gone. Forever. And we were not there when it happened. 

I touched her arm and help the hand that was left exposed. Had the ER staff left it there knowing we would want to hold her one last time? My heart hoped so. Her skin was still warm to the touch so how could she possibly be gone? This was impossible. I sat in the chair by the bed and laid my head on her side and the tears fell. I still was in disbelief. Then I bowed out and let Glenn have a private moment with her. We left. The next day the funeral home would pick her up and prepare her for burial.

One thing I am grateful for is that the funeral home gave us an opportunity to say goodbye one last time in the chapel. She was resting. Her hair and makeup made her look so beautiful. She was dressed in a plain white cover with a lovely lace collar. Eric got to say goodbye to his beloved Mom-Mom. Larry got to say goodbye and he kissed the top of her head the same way he always had. I got to see her looking pretty and "normal", it wiped out the last image from the ER and I was able to see her as she looked even before her health was failing.  When I told Glenn how she looked I could see how more ease he was. She looked much more like she did at Eric's Bar Mitzvah in 2006.

(The following is what I wrote and my sister-in-law read for me at the burial service)

When we spoke Monday night with Rabbi Carr, it was hard to focus on just what I felt was most important to tell him about our mom. Then I realized this morning that all of our memories were valid, significant and valuable. We each had our own memories. We all had ones that were centered on a particular event. Some quite personal, some general observations. Many shared by all of us.

Music was always part of our lives. Fortunately she carried a tune slightly better than daddy and from when I was little until as recent as last week, a tune would spring out, especially on a car trip and we had a family sing a long. I grew up knowing all the WW2 songs and the score from most musicals! We still have the song list from her teenage years spent in Wildwood and I remember most of them.

She surprised us all many times. We knew her favorite singer was Ed Ames and movie star was Sean Connery with Charlton Heston a close second. But then I found out she harbored a passion for the Beach Boys to the point where we had all their CD’s and also Johnny Cash. And Steven Seagal movies were some of her favorites. We rented each one as it came out at Blockbuster. 

Her capacity for love and helping others was endless, whether family, friends or one of our friends. She was tough as nails when she had to be, especially in business. Her nicknames bestowed upon her from subcontractors ranged from Coach to General. But kind and gentle too when the situation called for it. She did harbor a strange quirk. Mom had this nervous reaction when one of us was in the doctor’s office getting stitches or a minor procedure. Mom would laugh through the entire time. Not just a giggle, full blown laughing.

I am going to miss her very much. I am overwhelmed at the emails and comments from friends on Facebook and the memories they have of my mom. She was my best friend, teacher, comrade in arms, and confidante. No matter what path we decided to take, she was behind us totally. That is not to say she didn’t put in her two cents but when it came down to it, she would defend our decisions to any and all who doubted.

When I look back at her life, it was full. She had a soul mate and true love in Daddy, two children who have found their own loves in life and 3 beautiful grandchildren who love her too. A huge void is in all our lives as she touched everyone in her own way. 

Love you Mommy. To paraphrase her favorite song to sing to Eric when he was a baby: You are my sunshine, my only sunshine and your memory will make me happy when skies are grayest. I hope you knew how much I loved you. My sunshine has been taken away but the warmth of it lingers forever. And may I borrow your favorite phrase whenever someone was leaving, Watch the way you go.

________________________________________________________________________________

Since the funeral and the two days of Shiva, I have had many emails and posts on Facebook. When my dad died in 1989, these things did not exist. I am grateful to hear how she affected others' lives and quite taken with the memories. 


It has been almost exactly 33 years since my dad passed away. I looked online to see if the number 33 has a special meaning. Apparently it does, something profoundly spiritual. I am moved once again! This is from lovetoknow.com:

In numerology, 33 is often thought to be a deep and spiritual number. The number has had many religious connotations throughout the years and is associated with the beginning of monotheism 3,300 years ago. The number also bears religious weight in Hinduism, Buddhism, Judaism and Islam. The number 33 also carries weight with the Freemason group.

In numerology, the number is not easily obtained. As any student of numerology knows, double digit numbers are normally not recognized in numerology as the first and second numbers are just added together to get a single digit number. However, certain numbers are special in numerology (33 being one of them), and their double digit form is recognized as a life path number for people special enough to be have these numbers in their life.

I will say Kaddish, the memorial prayer, at services. I will remember her with love. I will make sure her grandchildren know who she was. I will miss her terribly.

A very close family friend told me something at Shiva Wednesday night:

"You get over the death of your father. But when your mother passes away, it is so much different. This is the person who gave you life, your first breath, healed you, dressed you, shaped your life. It may be years before you really understand it but never will you forget how this feels and your heart never heals."

It helped last night and I hope to remember to pass these wise words to someone else who needs help healing. And also to remember, Zichron L'vracha: May her memory be a blessing.

My favorite memories are of our visits to mom's lifelong friend since they were in First Grade. We would travel to Pittsburgh and they came East to visit with us and their family. In 1975, we had a picture taken of all eight of us and this is the way I will remember my parents:

                                        

If anyone is so moved to honor our mom, please make a donation in her name to FORCE: Facing Our Risk of Cancer Empowered, 1607 Tampa Palms Blvd. W, PMB #373, Tampa, FL 33647. You may be asking why FORCE?. In the mid 1990's we tested for the BRCA genetic mutation. I had genetic counseling when I found out I carried the BRCA2 mutation which increased my risk of breast cancer by 85-95%. I had my ovaries out in 2002 to reduce the  risk of ovarian cancer and the risk of breast cancer to 50%. Nobody really questioned my choice after all I was 42 and who had babies at that age? Then I opted to get a prophylactic bilateral mastectomy with reconstruction to reduce my risk to less than 3%. My mother encouraged my choice so that I never had to go through what my dad endured and would live to see my grandchildren. When someone mentioned that I was mutilating my body, my mother stood her full height of 5'3" and gave them a piece of her mind, including some choice expletives. She appeared to me to be seven foot tall! I loved her more than ever for that.

One of my college classmates had forgotten mom's parting phrase she always used and was reminded of it when I posted my speech. A high school classmate said his mother always said, "You are loved". He was so taken by my mom, he combined both.

I leave you with "Watch the way you go-you are loved."

Beth

Fridays for FORCE: Book release!

Every week, a book is released that really helps the public. Not so often, a book is released that helps a segment of the public that has too few well-researched and apropos to their own experiences. One such book is being released this February 9th, 2012. Co-authored by Sue Friedman, DVM and Executive Director of FORCE and Rebecca Sutphen, MD and Kathy Steligo, this book delves into hereditary cancer and being to identify and understand your individual risk.

Cover of the New Book

Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny

By Sue Friedman, D.V.M., Rebecca Sutphen, M.D., and Kathy Steligo

If you are concerned that the cancer in your family is hereditary, you face difficult choices. 

• Should you have a blood test that may reveal whether you have a high likelihood of disease? 
• Do you preemptively treat a disease that may never develop? 
• How do you make decisions now that will affect the rest of your life? 

Confronting hereditary cancer is a complex, confusing, and highly individual journey.  With its unique combination of the latest research and expert advice about genetic counseling and testing, preventative surgery, fertility and family planning, and health insurance coverage information, as well as compelling personal stories, this book gives previvors, survivors, and their family members the guidance they need to face the unique challenges of hereditary cancer.

Sue Friedman

I am looking forward to reading this book and seeing where to go next in my journey of being BRCA2 positive. So far, I got past high surveillance, moved into an Oopherectomy (removal of ovaries) and graduated to a Prophylactic Bilateral Mastectomy (PBM). With each step, I reduced my risk of more than 90% to less than 2% for ovarian cancer and less than 4% for breast cancer. I need to adjust to my new life everyday. Having had the PBM, I found out I had DCIS stage 0 and removing my breasts was the thing I would have done anyway with that diagnosis. Cancer-free is where I stand today and "Confronting Hereditary Breast and Ovarian Cancer" will take me beyond that level.

I just pre-ordered the digital version for my Nook. It is available to pre-order as a hardback for $29.66 on bn.com or the Nookbook at $9.99. Go to http://goo.gl/A0Eaf.

I know this book will be informational and empowering to all of us who are part of the BRCA Community. As always, you can find more information, support and unconditional friendship at www.facingourrisk.org. There is also a Facebook page for FORCE , https://www.facebook.com/facingourrisk, visit and click LIKE when you are on the Internet.

Love and hugs,
Beth

Fridays for FORCE: 13 Ways of Community Service

Executive Director, Sue Friedman, posted this on the Thoughts from FORCE in her first blog of the year!

Thirteen Ways FORCE will Serve Our Community in 2012

On New Year’s Day we celebrated FORCE’s 13^th birthday! Over the course of this year, we will highlight the significance of this milestone with blogs that emphasize the theme of “13.”

As my first blog of the new year, I am excited to share 13 things that FORCE will do to serve the hereditary cancer community in 2012.

1. Our new book, Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny is a Johns Hopkins Press Health Book that is available for preorder and preview on Amazon. The book will be widely available in February.
2. This month we are launching our inaugural FORCE Research Advocate Training (FRAT) Program that will train members of our community to become engaged in research review and safety panels. Training topics include cancer 101, basic genetics, introduction to clinical trials and research, patient protection, ethics, and more.  Space is limited; however, there is still time to apply for participation. Contact Lisa Schlager (lisas@facingourrisk.org) to apply for this program.
3. Save the date for our Joining FORCEs conference: the largest annual gathering by and for the hereditary cancer community. Our 2012 conference will be held October 18-20, 2012 in Orlando.
4. Our free “Be Empowered” webinars feature presentations by experts on topics of importance to our community. Our next two webinars will be on breast surveillance and updates from the IMPACT Study for men with mutations. Please check back soon for the dates and registration information.
5. More than 50 outreach groups in the United States offer peer support, information, and resources. FORCE also has international groups. Our outreach coordinators act as a point of contact and offer face-to-face support meetings for our members.
6. Our toll-free helpline provides peer support and resources for people who are concerned about hereditary cancer. We recently also launched our helpline for Spanish‐speaking callers.
7. Our Patient Experience Contact Tool is a searchable database of surgeons who have provided services to community members, who can connect one-to-one and share information about their experiences. If you have had surgery to treat or prevent breast or ovarian cancer, please consider entering your information.  If you are facing surgery, this tool can help you get feedback and referrals for surgeons in your area.
8. Our Genetic Mutation Database is searchable by mutation and ethnicity and helps connect people who have the same mutation.
9. FORCE will honor hereditary cancer previvors and survivors and recognize the challenges they face during National HBOC Week (the last week of September) and National Previvor Day (the Wednesday of the same week). FORCE made history in 2010 with its successful effort to pass a Congressional resolution officially acknowledging these significant days.
10. Our Post Mastectomy Photo Gallery shares images of women after mastectomy and reconstruction. Coming this Spring, we are updating the gallery to allow women to post their own postsurgical photos.
11. Show & Tell: The Book will be a new resource with photos of women after mastectomy with and without reconstruction. Available in the Fall, this resource will feature the models’ personal comments about their experiences, information about their surgeries, and references to relevant chapters in The Breast Reconstruction Guidebook by Kathy Steligo.
12. We will continue to advocate strongly for hereditary cancer research. For example, it has now been seven years since we introduced our community to PARP inhibitors as targeted cancer therapy for people with BRCA mutations. (Although initial studies have been promising, due to many challenges the research has not yet progressed to trials to seek FDA approval.) Check our advocacy pages in the coming months for updates.
13. We will continue our efforts to endow our Hereditary Cancer Research Fundto make a difference and improve prevention, screening, and treatment options for people with hereditary cancer through research. Stay tuned for opportunities to provide input as we assess our community’s research priorities.

FORCE Fridays: Help is Here! Find Your Local Support Group

Here is a link to help find a support group near you: http://www.facingourrisk.org/support/local_groups/index.php

I never put much faith in support groups. When my father died I was totally grief-stricken. My mother was even worse off. We were both counseled by friends and family to go to a support group and be among people who are experiencing the same thing. To put it mildly, they, well, they sucked! The Widow and Widowers group my mom attended was filled with women either looking for another partner or just stuck in grief mode and with men coming for the free food and maybe another caregiver. In my mother's own words at the time she said, "I am not looking for more dirty socks and sex. I want to move on with my life." As for me, I found the meetings with the family grief group at the hospital depressing and most were there to relive the life of their dearly departed. Don't get me wrong, I was sad, depressed and wanted to keep my dad's memory alive. But this was too suffocating.

So, when I found out I carried the BRCA2 genetic mutation, I was looking for some answers to my questions in my head. But I had a bad taste for the support groups. I thought I would try the Internet in 2006 when I was debating whether or not to move from heavy surveillance to prophylactic surgeries. I was already on Tamoxifen, a drug used to help ward off the cancer cells. I found loads of sites for breast cancer but since I had not yet been diagnosed, I felt like the proverbial square peg in the round hole. 

Then  one day, I was quietly surfing again, and I stumbled upon FORCE: Facing Our Risk of Cancer Empowered. I was actually looking for more information on prophylactic mastectomies and this website popped up. It was on the 3rd or 4th page which I normally don't venture to. But oh, my relief when I opened the page! There were my people! They got it! They knew what I was going through! There were message boards, live chat rooms and so much information to read. And one thing I did not expect, a local support group in Philadelphia. 

I was not in a rush to get involved with a face-to-face group after my experiences previously. But after making the decision to have surgery and the subsequent infections, cancer and multiple surgeries, I thought I would give it a try. There were 13 women plus the two Outreach Coordinators. This was very different. This group of women were all ages and backgrounds. Some survivors and mostly previvors. We talked, laughed, cried, talked some more. Found out the new trends, new information, news about FORCE itself. Then we had Show and Tell. We went into the kitchen and got to show our surgeries and tell about them. The rest of the group were encouraged to ask questions. Answers were given and more. Nobody felt alone anymore. We had sisters in the flesh, literally!

That was 2007. The Outreach Coordinators number 4 in our local group. At last count, there were over 200 women who receive emails and that we reach out to. The group has lists of doctors, hospitals and genetics counselors to interview and check out. We have one-on-one support before, during and after surgeries if the person wants it. There is a special part of the group that helps those younger women not ready for anything more than just close surveillance. The Outreach groups themselves have grown from 10 to over 60 and more are being developed as I write. There are even International groups now in Australia, Canada, England and New Zealand. I know that our Vice-President of Volunteers, Sandy Cohen, is trying to get more Outreach groups going all the time. 

If there is not a group available near you. please got to the URL I provided at the beginning of this post and check again. If they are too far away, here is an URL to go to so you can fill out the Future Network Sign Up Form:

http://www.facingourrisk.org/support/local_groups/future_signup.php

As always, FORCE family is here to help, support and provide love and information to get you through your journey as smoothly as possible. 

Love and hugs,

Beth

Pinkwashing is Year Round

Susan G. Komen for the Cure makes mockery of self with KFC pinkwashing campaign (opinion):

'via Blog this'

The above referenced article really points out the dichotomy of Susan G. Komen for the Cure. On one hand they want to get people to donate money to their Fund. On the other hand, they have almost any company endorse as long as they are willing to add pink to their printing press. Yes, it is as simple as all that. PINK, Pink, Pink. It is virtually all year round now, not just in October.

Also, another article I found (http://www.naturalnews.com/Komen_for_the_cure.html), links The Big K with Planned Parenthood. I am not seeing a relationship here. Why are they donating funds to them? I am not going to get into a debate on birth control, womens' rights, pro-life or pro-choice here. My point is that these funds, according to the Big K, are going to pay for mammograms and health checks for women. The basis for the donation deals with the reduced incidence of breast cancer when a pregnancy is carried to term. Turn the statistic around! Can it not be said that abortion is contributing to breast cancer? This is an argument that never should have been entered into by the two organizations.

I also found that in 2010, KFC was selling Buckets for a Cure, resplendent in their pinkness. You need to read the journalist's point of view. I agree with him that it seems that Big K is encouraging the consumer to eat the KFC fried chicken. Now, let us review this! What covers the chicken? White flour, salt and MSG along with the secret seasonings. The first three ingredients are quite harmful. As a matter of fact, MSG is a known carcinogen. Eating this fried food leads to obesity (not that I am one to talk, being seriously overweight) and that is proven to lead to increases risk of breast cancer as well as others. Frying at a high heat produces

acrylamides, toxic chemical by-products of cooking that are believed by manyhealthexperts to promote cancer (http://www.naturalnews.com/acrylami...). One scientific study, for example, demonstrated thateatingacrylamides boosts kidney cancer rates by 59 percent. Acrylamides are also linked to ovarian cancer. {Thursday, April 22. 2010, Mike Adams}

P. F. Louis writes in this article about where Big K's money goes (http://www.naturalnews.com/033783_Komen_for_the_Cure_pinkwashing.html) that the former CEO of Big K received $500,000 per year. Nancy Brinker, founder, has stepped in to take over but there are no figures pertaining to her salary. In the 2009/2010 fiscal year, they handed out teh following:

$141 million for education, $47 million for health screening, and $75 million for research. Fundraising costs and affiliate expenses were approximately $60 million with general administrative costs at $37 million.

Do not get excited about these monies. Not once has anyone been educated correctly about nutrition and what foods to avoid to help prevent breast cancer. There are doctors in this country and abroad who are working on drugs to help treat breast cancer but they have not received any funds. What about the thousands and thousands of metastatic patients out there? Any money going to help them? I have seen any reports on that front. Let us not forget the men who have breast cancer. My father died from breast cancer and the males who have a family history are not exempt. Big K does not recognize them to the best of my knowledge. It is only PINK!

Big K has been raising money since before 1982. Why, in all these years, have they not found the ever elusive cure? Of course not. Think of the corporate executives in the pharmaceutical industry, the chemotherapy producers and the radiation technology suppliers. They would be standing in the unemployment line right next to the mets patient who cannot hold a job longer than the respite in between chemo and radiation. 


Off to go fight other windmills kids! Sancho, saddle my horse and give me my lance and helmet. What color shall we use for the ribbons? Certainly not PINK!


Love and hugs,
Beth


P.S. Thank you to 

FRIDAYS FOR FORCE (Facing Our Risk of Cancer Empowered): About Us

FORCE (Facing Our Risk of Cancer Empowered): About Us:



'via Blog this'

Just browsing through the FORCE: Facing Our Risk of Cancer Empowered Website and was reminded of a very important segment that is offered, The Patient Experience Tool.

Ask yourself, how many times do you ask about a good book to read or which restaurant to try? Always asking for referrals from family and for important and inconsequential matters? Of course you do! So what would make choosing a Breast or Plastic Surgeon, hospital or genetics counselor any different?

This service is provided for and by volunteers and members of FORCE. Their personal opinions are there for anyone to take with them in helping to make an informed decision about their next step in dealing with Hereditary Breast and Ovarian Cancers. I myself have also provided information and very glad to share through my blog as well:

Fox Chase Cancer Center and Margaret Dyson/FRAP (Family Risk Assessment Program) is where I went for my BRCA testing (tested positive for BRCA2 in 1996) with Dr. Mary Daly.

(http://goo.gl/yDN6j for more info)

Abington Memorial Hospital (AMH) is my choice for surgery, especially since my doctors are on staff there. (http://goo.gl/YppSz)

Dr. Christopher Pezzi, also at AMH, Oncologic Surgeon, also a friend of mine. When he suggested surgery, I listened up since I knew he really had my best interest at heart. Moreover, he is a brilliant surgeon and has a wonderful reputation. (http://goo.gl/lgLQu)

Dr. Brian Buinewicz, Chief of Plastic Surgery at AMH. I cannot say enough about Dr. B! I had a rough journey with lots of setbacks and he and his staff were supportive and professional. (http://goo.gl/MduAR)

Betty Cummings, RN: She is the light of AMH in connection with Breast Cancer Support. She appeared at my hospital room door one morning and reached out to me with advice and help. Her information can be found on this url: http://goo.gl/f1y0B. Also on this page are links to "Look Good Feel Better" program by American Cancer Society, Gilda's Club at AMH and plenty of other information.

Remember, all these recommendations are totally subjective. Please! Remember this caveat for me and especially FORCE:

This website and the Registry service are for individual educational use only. Nothing on this site is or should be considered, or used as a substitute for, medical advice, diagnosis, treatment, or other information that could only be obtained by a face to face interview with a health care service provider. Any listing of a health care service provider’s information and/or views expressed in connection with submission of such information is solely the view of the Submitter and does not reflect the position of FORCE nor is anything on this website to be deemed an endorsement of any such doctor or health care service provider by FORCE. Use of any such doctor or health care service provider is engaged in by you at your own risk.

Love and hugs,


Beth

What Attending the 2011 Joining FORCE's Conference Can Mean

FORCE (Facing Our Risk of Cancer Empowered): About Us

The video about the Joining FORCE's Annual Conference shows so many important reasons to attend. This coming year will be my third time attending.

The first year I went, I really needed the affirmation that I did the correct thing. I had gotten the results of my being BRCA2 positive back in 1996. I had genetic counseling. It is so very important to get that. I was given sort of a road-map to what the future would encompass as far as my BRCA status. My choices were varied: from surveillance to surgery. In 2007, I opted to go the whole 9 yards and have a Prophylactic Bilateral Mastectomy (PBM). Since I had so many problems along the way with the PBM, I needed to feel that I made the right decision. I had lost the left implant in August of that year and in 2008 I got to go to the Conference. During the intervening time period, I posted on the message boards and in the chat room at FORCE and joined the local Outreach Group.

Quite honestly, I felt pretty beat up! I was cancer-free but feeling very let down by my body. But being surrounded by other women who had traveled the same road gave me my affirmation. I met several women with whom I had only communicated over the Internet or by phone. By taking the time to attend the Conference, I felt the impetus to go back to Philadelphia and get the word out about FORCE and the BRCA Community. I learned more about the genetic mutation that put me and my family at the increased risk. I also got to view the then unreleased movie, "In the Family". Several of us sat in the back of the room and just cried. Joanna Rudnick, the producer and star of the documentary was there and I was so proud of how FORCE helped to make this film a success.

I also met another FORCE member who befriended me was Diane Tropea Greene. She is the author of "Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer". She and I "met" on the FORCE message boards and she and one of her sisters attended the Conference and she signed her book. What an inspiration. This is such a good read; you laugh and cry and I found myself nodding my head at so many shared instances in life.













The second year I attended the Conference, it was moved from its original site in Tampa to Orlando, FL. The attendance had grown from about 250 to 500! I felt honored to again be selected to receive a scholarship to attend. I went with one of my close friends who happens to carry the BRCA1 gene mutation and also has had Breast Cancer affect her family. We learned even more at this Conference. The biggest part was growing the Outreach Group in Philadelphia, volunteering opportunities and again, feeling like I belonged to a group that understood my decisions.

At each Conference, there is a "Show and Tell" room, just like we have at most local meetings. Only this years' room was spread into at least 3 rooms. Each woman shows off her mastectomy along with her reconstruction or lack thereof. The year before I had gone there with one implant and one skin flap where the other had been. This time I had a completed set! We shared, showed and commiserated. Other women were given the opportunity to ask questions about different kinds of surgeries, procedures and end products. Not every set was perfect and we wore our scars with pride! It felt kind of strange, walking around with my top off, getting "felt" by other people, and talking honestly and openly about BRCA and my PBM. I almost went downstairs to the main floor of the suite without my t shirt! Good thing I was stopped on the stairs.

Again, I got to meet with others not only from the FORCE website but also from the Facebook pages as well. Sounds trite, but it IS good to put faces to names. I caught up with old friends and met many new ones. I learned some very good points at this Conference, different from the last. Each year there are always new sessions and I tried to attend them. I found out that I like to write and Kathy Steligo, author of "The Breast Reconstruction Guidebook", conducted a very intense session on writing.

One of the highlights of the Conference for me is the Saturday Morning Round Table Discussion. Each speaker has a table, obviously, and makes themselves available for a question and answer session. It is so wonderful to get more in-depth with the most knowledgeable people in their field.

I am hoping to get another scholarship this year and go again. New discussions are waiting! I also am very interested in learning more about fundraising on behalf of FORCE. I do what I can but I know there is so much more. I want to find out about getting FORCE's name and mission out there in the public eye. The BRCA gene mutation is so very misunderstood, by laypeople as well as professionals. If I can change my area of the world, then I feel I have done my part. If I can reach out to just one person and ease their mind about their BRCA status or impending surgery, then I have accomplished more than what I hope.

Love and hugs,
Beth

Spotlight on Small Business, Faith and Hope Boutique

Having been part of a family business for over 20 years, I would like to take the time on my personal blog to shine a spotlight on samll businesses, especially one that supports the cancer survivor/previvor community.

This blog is focused today on Faith and Hope Boutique, located in both Abington and Philadelphia, PA.  When I was going through my upheavals in my BRCA journey, I ended up losing my left implant following my Prophylactic Bilateral Mastectomy (PBM) due to very bad staph infections.  I was a mess emotionally because of the way I looked with a skin flap on the one side just hanging there.  I had heard about Faith and Hope Boutique  through my plastic surgeon, Dr. Brian Buinewicz (http://www.phillyplasticsurgery.com/).  He suggested I visit and see what they can help with to even out the sides.  Never having been one to wallow much, I visitied my mom and she encouraged me to go over there since the store was around the corner.

I met Jeanette first, she is pictured on the left.  She heard my long, sad and involved story.  Turns out that she and her sister, Bonnie, also had the same PBM and used Dr. B!  During Jeanette's chemotherapy and after their surgeries, neither one of them could find a store that sold the camisoles and bras needed post-surgically.  Jeanette also wanted to find nice looking hats, pretty and stylish scarves and wigs when she was also under-going chemotherapy.  So, the idea for Faith and Hope Boutique was born!  They opened the Abington store in October, 2007.  Soon afterward, an opportunity arose to open another branch located at the University of Pennsylvania.  They alternate who tends after which store.  Everything they have is there to help cancer survivors of all types.  Since Jeanette is a survivor of breast cancer(4 years now) she is very aware of what a survivor is looking for in supplies.  Bonnie, a previvor, underwent the PBM at the same time as her sister to be a support of one another.

To quote the ladies, who care about their community as well:  "Our mission is to enhance the lives of women affected by breast cancer from diagnosis, throughout their treatment and living well - beyond!  Faith & Hope Boutique is a one of a kind shop, reaching out to Survivors & Friends who are transformed, but not defined by the disease." 

Speaking for myself, I was treated with care and compassion.  When I got my mastectomy bra and fitted with a fiber-fill prosthetic, I cried and so did Jeanette.  According to Bonnie, the crying happens all the time.  You feel transformed into a swan from an ugly duckling.  I felt "normal" again, like a woman. 
The tears were happy ones as well as relief.  As I got my fills on the left side with the tissue expander, I took out pieces of the fiberfill so the tow sides were even.  I have been back for post-surgical bras that fit without irritating areas where scar tissue has formed.  I have bought survivor-themed jewelry, car magnets, hats, scarves and clothing! 

AND NOW THEY ARE ACCEPTING MEDICARE and can direct bill for their patients!  What this means is that they are slowly getting approved with other Insurers too so they can direct bill for bras and prosthetics which are considered durable medical supplies.

There have been other friends of mine who have had other cancers other than breast cancer.  I had a gift basket made up and sent to one of my former college friends when she was undergoing her chemo.  The Internet site they have displays more of the popular items they carry.  I still use the Lindy skin care products that have a good SPF content since I am at a higher risk for melanoma due to being BRCA2+.

Both ladies are also very involved in their community.  Jeanette and Bonnie both help with Young Survivors Coaltion of Greater Philadelphia (http://www.youngsurvival.org/philadelphia) and host an annual "Courage Night" in October.  Jeanette also runs the YSC support group at Gilda's Club in Warminster (http://gildasclubdelval.org/).  Bonnie is very active in the Philadelphia Outreach chapter of FORCE (http://www.facingourrisk.org/).  The Abington store also hosts a Book Club the 2nd Thursday of every month.  You can also follow them on Facebook, Faith and Hope Boutique!  All of these venues have given me a chance to meet new friends and help where I can too.

Please visit either in person or online.  The two locations are staffed by survivors and previvors who have gone through the experiences and help those in need.
Abington location:
1915 Guernsey Ave.
Abington, PA 19001
215-885-1143  Hours: closed Monday, Tues-Fri 10-6, Sat 10-3

U of P location:
Perelman Center @UPHS
3400 Civic Center Blvd.
1st Floor, suite #1-680
Philadelphia, PA 19104
215-615-3321  Hours: Mon-Fri 10-4

And of course 24/7 on the web at http://www.faithandhopeboutique.com/

If you know of a family-owned small business you would like to see spotlighted, please forward me the information!

Love and hugs,
Beth