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: A Bit Late!

So many things have been happening this past week, including my return to work after a 3 week leave of absence. In catching up, the Komen v. Planned Parenthood debacle occurred.

In response, there are many articles and opinions.

For my response, I have added pages to my Blog. At the top, you will see tabs. Please click on the one marked IMPORTANT VIDEOS. On this tab, I will update with more videos to look at. Right now there are just a few. But important they are indeed.

Happy viewing!

Love and hugs,
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

Five Movie - Official Site - myLifetime.com

Five Movie - Official Site - myLifetime.com:

'via Blog this'

I am watching the movie, "Five". I am on the third segment as I write this. As usual, I am crying. But I wonder if I am crying over the characters on the small screen. Am I crying over the loss of my father who passed away from breast cancer in 1989? Am I crying over the battles fought and won and lost by my friends? Some are more than likely happy tears for those that have survived chemo, radiation, surgeries and pain but are still here to tell their own tales.

There are times that I wonder if breast cancer is just lurking under the surface. I am at the same age my father was battling his breast cancer. So are the surgeries and chemo-prevention enough to chase away that genetic and hereditary predisposition? I am so full of doubts. I find myself volunteering for anything I can do with FORCE: Facing Our Risk of Cancer Empowered. This is in some way, a reaction to my fears. FORCE helped me through the worst of the times when I had my mastectomies. So giving back is what I need to do.

I also find myself very short-tempered. I erupt, mildly at times and others when lava seems to flow venomously out of my head out loud and also on paper. I have this dread lurking. I should be celebrating the fact I am here and alive and have a beautiful family. And one of my friends from FORCE, Caryn, told me once I am feeling survivor guilt. It is beginning to really invade my thoughts on a regular basis.

Survivors have this feeling of waiting for the other shoe to drop, waiting for breast cancer to rear its ugly head as a metastasis in another part of their body. And it is deemed OK. But is it OK for someone who "dodged the bullet" to wonder if it really is not going to happen? It has struck in a straight line from my paternal great-grandmother, grandmother and then my father. Every one of my family members who opted to be tested for the BRCA gene mutation, has tested positive. It seems to run very strong in our family, even one of my dad's cousins died from ovarian cancer. Our chances are higher than the average person's of developing cancer. The average woman's chance of developing breast cancer is one in 8. As my son just asked me, "Does that mean if you lined up 64 women, 8 of them would have cancer?" More than likely yes.

Because I carry the BRCA2 genetic mutation, my son has a 50% chance he will carry it too. He is now 18 and can make the choice himself to test or not. He has indicated that he wants to. But before he does, I will make sure he has genetic counseling at Fox Chase Cancer Center which is where we were all tested at the Dyson Family Risk Assessment Program (FRAP). I am the only female in my generation and my niece is the only one in hers. She is way too young to be tested yet. I feel guilt over this as well, that I may have passed the gene on to my son and perhaps my brother on to his children.

As I ramble on, I am reminded of the last line of the tile on the wall in the last segment, "Hope for the future." This needs to slowly replace my doubts and concerns. I will never stop helping to Spread the Word and Save a Life through FORCE. Men and women both need to be aware of their family history. Get genetic counseling to see whether or not there is a need for testing and if there is, listen to what they have to say. Better yet, take your significant other or friend to help absorb what you hear. Because like in the "Lily" segment of the movie, sometimes you don't hear the doctor and you need that support to help you! And remember FORCE is here too, www.facingourrisk.org!

Thank you to the directors and producers who made this movie with taste and warmth!

The wall as shown in the last segment, "Pearl".

Love and hugs,

Beth

22 Years Later

February 19, 1989. It was a cold and very rainy day. I truly believed that the angels up above were crying along with us as our family buried my father. His death certificate stated that he died from Hepatic failure. His liver could not hold out against all of the chemicals pumped in over the course of chemotherapy he received during his five year bout with breast cancer.

A man with breast cancer? Yes, my father was diagnosed with breast cancer. What was really amazing medically was that in the year 1984, the oncologist my father saw had four other men with breast cancer at our small (in those years) local hospital. Every week, my dad had an infusion of chemo as well as taking tamoxifen. Even though the doctor told my parents that dad was only expected to live for 6 months, he fought valiantly for 10 times that prediction.

Today, he would have received dose dense chemotherapy and maybe even radiation. What he went through seems so antiquated compared to today's therapies. Due to his bout with breast cancer, I was tested at Fox Chase Cancer Center and routinely participate in the Margaret Dyson Family Risk Assessment Center (now known as the Risk Assessment Program, http://www.fccc.edu/prevention/riskAssessment/staff.html). My father's frozen tissue sample from his original pathology and my blood samples determined that we both carried the BRCA2 genetic mutation. In 1996 when I found out this information, I received concise and informative genetic counseling as do all participants in the RAP at FCCC. We mapped out a plan of action and so far, as I have followed it, I am cancer-free even having discovered that I was at Stage 0 with DCIS at the time of my prophylactic bilateral mastectomy.

My father's death was a horrible experience but through it and less than 10 years later, I was able to avoid what my breast surgeon had told me was a certain outcome; it was only a matter of time before breast cancer would rear its ugly head within my body.

So as I recite the Kaddish prayer during my dad's Yahrzeit, I miss him very much and probably spend at least a week being miserable and unhappy at the loss of a most wonderful man, father, son, uncle and cousin. However, his legacy genetically has helped those he left behind with a knowledge that allows us to overcome the high risk of disease that has plagued the family through several generations.

If not for Dr. Daly at FCCC and the support and information at FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org) I may not even had gotten to age 51 and sitting here writing about genetics and breast cancer! Thank you Dadddy. Though you have missed meeting your grandchildren and other new family members, because of your sacrifice and love, we remember you at this yearly celebration of your life.

Love and special 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

When "Thank you" is Just Not Enough

Today marks the very first Annual National Previvor* Day, in the middle of National HBOC (Heriditary Breast and Ovarian Cancer)Week. Due to the efforts of Sue Friedman, Executive Director of FORCE and Representative Wasserman Schultz, H. Res 1522 was passed UNANIMOUSLY in Congress. Cancer does not recognize party lines, race, creed, nationality or sexual preference. I am proud of our politicians that they threw aside biases and voted to approve this very special milestone.

*Previvor (according to Wikipedia)

A cancer previvor is a person who is not diagnosed with cancer, but has a survived the predisposition, or higher risk, of cancer due to a certain genetic mutation.[1] As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting in to DNA testing, can make informed choices prior to cancer diagnosis.

Like many others in my sphere of influence, I witnessed first-hand the toll cancer takes on a loved one. My father passed away from Breast Cancer in 1989 after a 5 year battle. In 1996, I found out I carried the BRCA2 Genetic Mutation. This meant I had a predisposition to both Breast and Ovarian Cancers in addition to my strong family history. In 2002, I had my first of many surgeries to remove my ovaries, ending one stage of my womanhood. Being 42 I was not in favor of more children but I still felt that tug of never being able to have more and having that choice stripped away from me in deference to avoiding Ovarian Cancer and reducing my Breast Cancer risk by half.

By 2006, I had had several scares and a multitude of mammograms, biopsies, MRi's, ultrasounds and my stress level was at an all-time high. Having never had cancer, I felt out of place in the survivor support groups both in person and on the Internet. My fiancé convinced me to seek another opinion and I went to an oncologist for help. I was put on Tamoxofin as a prophylactic measure. This was met with mostly contempt from survivors along with comments such as, "You don't know what it is like to be a survivor", "How can you even begin to compare your life with ours". I was in tears because I had nowhere to turn for help.

I began investigating the Internet with a ferocity. I discovered FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org) and found a home! I was in tears again but these were happy tears! They got me! I was not the only one out there. I heard discussions about genetic testing, prophylactic surgeries, reconstruction (or not), talking to family members and an overall feeling of belonging. In 2007, with love, support and information from my family, friends and my FORCE Family, I had the next of a series of surgeries to have my breasts removed and reconstructed. I encountered many speed bumps along the way. When someone would tell me I was "mutilating" my body, I had FORCE to turn to. In 2008, I attended my very first JoiningFORCEs Conference in Tampa, FL. This was followed by the next one held in Orlando, FL. Each trip, I learned more and more and brought back more to share with my fellow BRCA community in Philadelphia.

In the words of Dr. Friedman in her recent blog entry,

An estimated 750,000 people—about .2% of the entire U.S. population—carry a BRCA mutation. Not a large group compared to our overall population, yet we shoulder about 10-14% of the breast and ovarian cancer burden, and our cancer risk is some of the highest known to science.

. I am part of that percentage.

The importance of the HBOC Week and Previvor Day cannot be felt as poignant as it is with those of us in the BRCA community. This will help pave the way for more research and hopefully, a way to reduce and maybe even eradicate Breast and Ovarian Cancers in, perhaps, my child's lifetime. FORCE has brought an empowerment and sense of belonging to me more than any other group could possibly have done. Out of this has sprung a wonderful new book, released during HBOC Week, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port, a FORCE member.


We have also been fortunate to have a view from another FORCE member and friend, Diane Tropea Greene, Apron Strings: Inhereting Courage, Wisdom and . . . Breast Cancer. This chronicles a family of sisters and their journey through their family's ordeal with cancers.
Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer

My friend and film-maker/researcher, Joanna Rudnick, was prompted to make a documentary following her family and her own search for answers to make an informed decision after learning she carried the genetic mutation. Her film, In the Family, is incisive and educational in a grounded way. I have since become good friends with one of the FORCE women in the film and glad we met 3 years ago!


I am having trouble typing through the tears forming. Had I never found out about my mutation I carry, my surgeon was almost certain I would have had a bout with Breast Cancer at some point. It was a matter of when, not if. As a matter of fact, they did discover a stage zero DCIS in my pathology. A Bilateral Prophylactic Mastectomy would have been the treatment for me and that is exactly what I had done. I am here, defying my risk of 85-90%, seeing my child grow up to become a man and graduate next year from high school. This year, we celebrated our 5th wedding anniversary, and I never would have gotten here if not for him. I am happy to be able to celebrate this momentous occasion of HBOC Week with my fellow FORCE Members and look forward to many, many more!

Love and hugs,
Beth

Book Review: "Apron Strings: Inheriting Courage, Wisdom and . . .Breast Cancer"

I have been very fortunate to have met brave people. Those that have battled Cancer are among the most brave of all. The first who comes to mind is of course my Father. In his mid-fifties, he must have known the lumo he found on his breast was Cancer. It was ignored as was my Father's way with anything that foreshadowed a problem. After he went through a battery of tests, his worst fear was confirmed, it was Breast Cancer. He went in for a mastectomy and endured 5 years of weekly chemotherapy and various procedures meant to end the Beast, Breast Cancer.

I was very proud of my Father. He never really complained. And because of our family history of Breast Cancer, we participated in the 1st of many tests for the BRCA gene mutation. My Mom was able to get the frozen section of his pathology and it was tested as well. My results as well as Dad's came back BRCA2+. The ensuing genetic counseling helped prepare me for a course of action.



In the interim, I researched the Internet and discovered FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org). Through this wonderful organization devoted to families with history of Breast and Ovarian Cancers, I also found a new friend, Diane Tropea Greene.

Diane had written a book, "Apron Strings: Inheriting Courage, Wisdom and ... Breast Cancer". I looked in the local book stores and couldn't find it. While Diane and I emailed and talked over the phone, we got to know each other. She also sent me a signed copy of her book. She also came to the Joining FORCES Annual Conference with one of her sisters. I recommended the book to everyone who I came in contact with at the Conference as well as back home.

Diane writes:

Apron Strings: Inheriting Courage, Wisdom and... Breast Cancer is my family’s story of hope and survival against seemingly insurmountable odds. It is written, in part, to honor the memory of family members who so bravely faced their cancer with courage, grace and dignity. It is because of their strength that my generation had the perseverance to delve into our past and make tough and inconceivable choices, to emerge victorious. Their defeat has enabled our victory.

The book starts out at a family member's funeral, just one of many that have dealt with cancer. Diane herself is also a Breast Cancer survivor and the journey leads her to Genetic Testing. She discovers she too carries the BRCA gene mutation. This can and does often lead to an increased risk of not only Breast Cancer but also Ovarian, Pancreatic, Melanoma and Colon Cancer among others. The risk of the average woman is 8-12% over her lifetime. If a man or a woman carry the BRCA muation, it can increase their risk up to 90% or higher. This is another kind of journey that Diane, her sisters and other family members have chosen to take to reduce their risk.

At times very sad but alternately funny, Diane recants a true-life story of one extended family's ordeal with Cancer and how they are handling it. How do they tell the various cousins about the testing results? how can they try to halt Cancer's path in their family? And what of the next generation of children already getting to the age they might want to be tested.

I applaud Diane for being able to get the word out about Breast Cancer and beating the odds!