Spirit of Empowerment: A family gives back « Thoughts from FORCE

Spirit of Empowerment: A family gives back

Every Charity needs funds to run. Not every person who is affected by what the group supports can afford to give back monetarily. Some of these people take what they need and are never heard from again and that is fine. The main thrust of a charity is to help those in need. In order to help more people, more money is needed. It is a fiscal fact. Some, like me, give back by actions and deeds; I volunteer my time and energy whenever I can.

Then there are a wonderful family who has given back by establishing a Scholarship Fund and Project to aid those in need. The Brenda L. Caplan Memorial Fund was started by her daughter Dara Marius and husband, Myron Caplan. The Butterfly Project was created by Molly Marius with help from her mother Dara for Molly's Bat Mitzvah project in conjunction with the Scholarship to continue to add to it and extend its influence. Through these two funds, FORCE was able to bring 75 people to this year's Annual Joining FORCE's Conference. Below are excerpts from Dara's acceptance speech:

In accepting this award today, I would like to take a few moments to share with everyone here how FORCE has impacted our lives, and what this project has meant to our family.

Like so many in this room, our family’s lives have been irretrievably affected by hereditary cancer. I am BRCA 1 positive. My mother, Brenda, had both breast and ovarian cancer. Her half-sister died in her 30’s of breast cancer. My grandmother had bilateral breast cancer. Even my non-biological aunt, is BRCA 2 positive. In short, hereditary cancer– or the risk of it–is everywhere we look in our family.

The good news, however, is that with each generation the options become exponentially better. When my mother was diagnosed with breast cancer in 1992, no one suggested genetic testing to her despite her young age and strong family history. Had my mom been tested, and had her ovaries been removed, maybe her outcome could have been different.

But it is not just the prevalence of genetic testing that makes me optimistic. We now have treatments specifically tailored to the genetic make-up of a tumor. We have researchers who develop studies that seek to understand our unique population from both a treatment and prevention perspective.

Along with these important advances, in my mind, the broadest and most influential generational change for our community relates to the creation of FORCE and the passion of its members. Through FORCE, women and men affected by hereditary cancer find support, friendship, inspiration and most of all, knowledge. FORCE gives us unparalleled opportunities to acquire information and to find compassion and identity. FORCE is at the forefront of political leadership on issues and laws which affect the legal rights of our community.

Looking around this room, I know that we all have very individual and personal reasons for attending this conference. Some of us are previvors. We know or suspect we have a genetic mutation, and we come to this conference to understand our prevention and surveillance options. Others here are fighting hereditary cancer with bravery and dignity, and they seek knowledge of cutting edge treatment options available to eradicate their disease. Some are here professionally as doctors, researchers, geneticists, nutritionists, and counselors who help us treat, and prevent hereditary breast and ovarian cancer. And, finally, I can see the family members and friends—those who have the very difficult job of standing on the sidelines, watching and caring.

We all come together for different reasons. Yet, I believe we share one fundamental unifying belief. None of us here views ourselves as victims. Whether we have cancer, or a genetic predisposition, whether we care for or treat someone with hereditary cancer issues, we are all of us empowered. We cannot control our genes, but we can control how we respond to the hand life has dealt us. Instead of victims of chance genetic circumstance, we are people committed to helping each other and the generations yet to come.

For my family, this commitment and our desire to give back to the organization that personally helped me so much, led to the creation ofThe Butterfly Project. What started out as Molly’s idea to help people affected by hereditary cancer, rapidly grew into a namesake memorial fund for my mom and an ongoing scholarship program to provide monetary support to FORCE members who could not otherwise afford to attend this Conference.

Finally, for those of you who are somewhat new to FORCE, I’m going to let you in on a little secret. When you joined FORCE, you also took your place in a chain of people.

"For those of you who are somewhat new to FORCE, I'm going to let you in on a little secret."

Right now you may have one hand extended forward holding on to the hands of those who have walked this road before you. I am here to tell you that those people will hold your hand tight. They will keep you steady, and they will help you navigate the winding road over the mountains that seem so large. And, one day before you know it, you will cross those mountains and reach a beautiful valley. And when you arrive, your other arm will automatically reach back and grab on to those behind you, who you will now help. Because that is how it is done in FORCE. That is how we face our risk of cancer—we face it empowered as a community. On behalf of everyone who empowered the Butterfly Project, we thank you very much for this award and support!

The critical need for ovarian cancer prevention research « Thoughts from FORCE

The critical need for ovarian cancer prevention research « Thoughts from FORCE

The link above will take you to the latest blog entry from Sue Friedman, Executive Director of FORCE, Facing Our Risk of Cancer Empowered.

Women who carry the BRCA 1 or BRCA2 genetic mutation run an increased risk of ovarian cancer over and above the average woman in her lifespan. Because of the opportunity to poll the members of FORCE and the BRCA community as well as women with a previous diagnosis and those with Lynch syndrome, we tried to develop a prioritization of the prevention of this silent killer.

Please read the article and share it with others. Ovarian cancer is sneaky. It is hard to test for it until it may be too late. The research and studies are ongoing to help identify how we can better save the lives of many women across the world.

Love and hugs,

Beth

Bucket List? Why Not! The First 10.

I got to thinking that life is too damn short and I wanted to create and examine a bucket list. My parents had one too and it had one item: See Australia. My dad died in 1989 but my mom got to their dream destination in 1995 and went with her sister. They spent 3 weeks there and had a great time in both Australia and New Zealand. Ten rolls of film have proven that point.

So, I am having trouble itemizing my list. Should it be done alphabetically? With importance being the deciding factor? Based on the probability of completing the line item?  Nope, I am doing it as they pop into my head!

1.  See Washington, DC again with Larry. Whether or not the kids or grandkids come along is not relevant. I want to see it with him, together. It will be different experiencing it through his eyes and mine.

2.  Visit Cooperstown and the Baseball Hall of Fame. When I saw it the first time, it was just the Hall of Fame. But there is so much more! The Farmers' Museum, Fenimore Art Museum, Glimmerglass Opera and the New York State Historical Society. I have done some research and it appears that we could spend more than a weekend and really enjoy the splendor of that section of New York State. By the way, on a historical note, the town is named for Judge William Cooper, father of James Fennimore Cooper, who originally purchased the land.

3.  Seattle, WA and the outlying area. Okay, I will admit, three authors I really love have written about the area: Stephanie Meyer, Twilight Collection, Nora Roberts, The Search and Debbie Macomber's Cedar Cove Series. Although Cedar Cove is not a real town, Port Orchard about whom it is based is there! Maybe in honor of Bella, which was my paternal grandmother's name and my namesake, I will visit the real Forks. I also have friends who live in that area as well as in Oregon.

4. Mt. Rushmore National Park!  Never been to South Dakota either so this can be pretty tremendous. There had to be a very good reason for artist, Gutzon Borglum, to have picked these mountains. Yes, another piece of trivia that rattled around in my head and a push to see his creation!  Other National Parks are further down on the list! While there, it will lead to.....

5. We need to see the sculpture of Crazy Horse in the Black Hills. This past June celebrated the 135th anniversary of the battle of Big Horn. A bit of combined trivia: Korczak Ziolkowski, he too an award sculpture, came to help Borglum with Mt. Rushmore. He was asked by the Chief at the time, Standing Bear, to design and sculpt a project memorializing the Indians of North America.  My art history teachers would be proud of what I have retained after all these years.

6.  NEW YORK CITY! I want a week to see so many things but maybe one day would suffice. I want to see NYC again as an adult. Wander around the MMA, Broadway with maybe a show and dinner at a NY Jewish Deli. I have never been to the Guggenheim so that should be in there too.

7.  Mystic Seaport, CT is a tourist trap after the movie came out but I need to see it.  On a trip to Newport, RI with my ex-husband, I wanted to stop on the way to or from and he wouldn't. So, I am going to see my denied pleasure and have some great seafood!

8.  While on the East Coast, I have never been to Boston.  Baseball season would be terrific...they didn't replace Fenway Park did they? Even if they did, I want to see the BoSox play. Boston Commons, the Swan Boats, tour of Harvard and JFK's library, the New England Aquarium, maybe the Boston Children's Museum if we have time. See! I have thought these things out!

9.  Newport, RI is very near to a very good friend who lives in Warwick. Then again, RI being so small, nobody lives too far away from one another! Larry has never seen the Mansions of Newport and I want to visit them again as well as Green Animals sculptural gardens. One of the best places I would bet to get a lobster roll and I aim to have one!

10.  Freeport, ME.  Take a guess, the first three don't count unless you have never heard of, you GOT it, L. L. Bean!  It is open 24 hours a day. Wow, shopping at the outlet whenever we want. However, as I have looked into that, nothing else keeps hours with L.L. Bean so better off going back to the motel and sleep until breakfast. Maine is as far north as we can get on the East Coast and I want to see the sun come up there with a great cup of coffee keeping my hands warm as my heart fills with nature.

So that is the first installment!  There are friends in all of these places that I can also visit while knocking things off of my list. I need to sit back and think of more but my mind is whirling on a weird axis as it is with of all these places.  Looking forward to sharing more with you!

Love and hugs,
Beth

FORCE June Updates & My 4th Foobversary

Changes at FORCE, Ovarian Cancer Early Detection Study and More

I cannot believe how time marches on! Just five short years ago, I was debating on having a Prophylactic Bilateral Mastectomy (PBM). During that time, I talked to my doctors, family and friends for their input. Two of my close friends are survivors and they both said if they had the option like I do that they would take it. Neither one wanted to see me go through what they did with chemotherapy and radiation and all the side effects. But I still felt like I was intruding on their experiences and needed to talk to someone who had tested positive for the BRCA gene mutation. I turned to the Internet and found many sites devoted to cancer survivors.

In 2006, while doing my research on the Internet, I discovered FORCE, Facing Our Risk of Cancer Empowered. This site was existed primarily for people with either a hereditary genetic mutation and/or a strong family history of breast or ovarian cancers. I was excited to be able to feel like I belonged!

BRCA2 positive tested, check.

Strong family history of BOTH breast and ovarian cancers, check.

Needed help, support and information without feeling like I was intruding on survivors feelings, check.

I found my place, I found a home where I could ask questions and get help dealing with not being a survivor but yet still having a very high risk of being diagnosed with cancer. I had already had my ovaries out in 2002 thereby reducing my ovarian cancer risk to less than 2% and cutting the breast cancer risk from 90% to about 50%. Because my father had breast cancer, it raised my risk. In 2006, while on my journey of discovery about my future PBM, I was still finding health professionals still only concerned about my maternal side breast cancer history and as recently as 2010, some still thinking the BRCA gene is related to the sex chromosome.

Due to the efforts of the volunteer members of FORCE, these myths were being dismissed. The GINA, Genetic Information Nondiscrimination Act, was passed. Prior to GINA, I had to make sure my doctors did not write anything in my charts about being BRCA2+ less I be dropped from my health insurance. Now, patients do not have to worry!

The term, Previvor, became the #3 new word according to Time magazine in 2007! By definition, a Previvor: A survivor of a predisposition to cancer. No longer not being here nor there, I have a place in a community called FORCE, Facing Our Risk of Cancer Empowered.

After my PBM in June of 2007, I needed to look for more help since I was going through terrible infections. The members of FORCE came through once again. One member in particular was Barbara Pfeiffer who is currently the CEO of FORCE. She was always encouraging me and told me to post on the message boards to other members so they knew not all surgeries were a cake walk. I am so very thrilled and proud that Barbara is still a strong presence with FORCE and take this opportunity to send out congratulations and Mazel Tov. Don't forget, I will always be here to volunteer as always!

So, in looking forward, I am still cancer-free and celebrating the 4th anniversary of my PBM, or my own term, Foobversary, on June 7th!

Love and hugs,

Beth

Survey on ovarian cancer risk management research for women with ovaries

Survey on ovarian cancer risk management research for women with ovaries

FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org), is always on board with Advocacy programs. This survey was created so that we can attest for the need for continued funds for Ovarian Cancer research, risk management and treatment.  Below are the parameters for the survey.  All you need to do is click on the link above to get started!  And of course, please pass this along!!

Survey on Ovarian Cancer Prevention Research

Researchers are considering studies using medication or salpingectomy (removal of the fallopian tubes) to lower ovarian cancer risk in high-risk women. FORCE is partnering with researchers to understand more about women's attitudes about participating in ovarian cancer prevention studies.

This survey is open to women who:

• have a BRCA mutation, Lynch Syndrome, or ovarian cancer runs in their family
• have not been diagnosed with ovarian cancer and still have one or both ovaries

The surveys need to be completed by June 1st so that our Executive Director, Sue Friedman, can also present these results at our Annual JoiningFORCE's Conference June 23 to the 25th.

Love and hugs,

Beth

Visiting Cancer Again

The many social media outlets are there to help with a variety of issues including, but of course not limited to, Cancer. One is drawn to what one needs to research or develop a support system to help them cope. Any disease or psychoses has one or more website and each website has a way for the anonymous member to communicate. This would be a message board, forum or private messaging. When I entered the term "Breast Cancer" into Google one afternoon, there were over 42 million results returned. Although I am sure many are duplicates and some are just out there to sell some miracle cure, I had found a few to be helpful without expecting any in return from its members except the occasional donation to help keep it fiscally sound.

I, however, did not find these websites particularly helpful to my situation. They all dealt with people who are Survivors, who have survived the ordeal of cancer and are still living.

By comparison, the term "BRCA" (Breast Cancer Gene) returned 145.000 results, narrowing my search for information further. FORCE, Facing Our Risk of Cancer Empowered showed up fourth on the list. So I wandered over to www.facingourrisk.org and checked it out when I was first told I carried the genetic mutation known as BRCA2.

Ok, this blog has a title about Cancer. Where was I going with this?

Yes, here is the thing. I recently had a conversation on instant messaging with a woman I met through breastcancer.org, also known to some of its participants as "BCO". We had met in the real world several years ago with some other women from BCO at an informal get-together for lunch. She is a breast cancer survivor. Last year, it revisited her life. She caught it early and had another mastectomy and reconstruction. The oncologist has suggested to her to take Tamoxifen to help suppress any wandering cancer cells.

She told me that she gave up on the breast cancer sites because she felt there was too much "gloom and doom" and all she wanted to know was what others experienced as side effects to the Tamoxifen. I sent her to look at FORCE and if she couldn't find the topic, post about it herself. The conversation circled around my experience and I told I took it as a preventive measure after finding out I am a previvor. She had no idea what I was talking about so I gave her a short version definition.

For those inquiring minds out there, you can educate yourself as well as others about the word!

I am what FORCE (Facing Our Risk of Cancer Empowered) calls a "PREVIVOR".

By definition found on the FORCE website:

Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

FORCE coined the term previvor in 2000. Since then, the term has been adopted by many high-risk women, healthcare providers and researchers, and was named by Time magazine as one of its top 10 buzzwords of 2007.

As always, I feel so thankful for all that FORCE has done for me and my family. I am glad to pass on information and direct people to its website. I cannot help the entire world but I am doing what I can, one person at a time, in my small corner!

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