Our Voices: A Blog by Links, Callers and Volunteers

It’s All In The Genes

Cancer has been a cloud over my family for a long time.  I lost my mother to breast cancer when I was 30, and years later, I lost my sister to the same disease.  My aunt and another sister were also diagnosed with breast cancer and one of my brothers was diagnosed with colon cancer in his 40’s.  When my brother discussed his symptoms with our older brother, he was shocked to find out that he had been having similar symptoms for some time, but fear kept him from checking it out with a doctor.  On my younger brother’s insistence, he went to the doctor and had surgery to remove a malignant piece of colon.  However, my older brother was reluctant to inform the rest of the family and only after much prodding by my younger brother did he agree to inform our sisters.  This genetic information was of the utmost importance for our family members to be made aware of so that proper screening could be done.  I had my first colonoscopy in my mid-30’s only because of my family history - screening recommendation for the general population is at age 50.  Waiting until then could literally mean the difference between life and death.

My family and I belong to the Orthodox Jewish community.  Privacy in matters of health is the norm.  Cancer has touched the lives of so many people, and most people know of someone, whether friend or family, who has been affected by this disease.  It is time for us to replace the secrecy with open dialogue between families, friends, and community so that we can help each other through this difficult ordeal with encouragement, support, information, and friendship.  Everyone needs a shoulder to lean on and the Jewish religion is built on gemilut chasadim (reaching out to others in need).  We need to arm ourselves with an open dialogue about family cancer genetics so that we can inform and protect ourselves and our families.

I reached out to Sharsheret to try and figure out what I need to do to be proactive with my health and the health of my children.  Sharsheret is extremely supportive and its staff responds so quickly. I spoke with Sharsheret’s genetic counselor who offered to set up a family conference call for me and my siblings so we can all hear the same recommendations and also have a chance to ask our individual questions.  I believe this is the beginning of an open dialogue for my family that will lead us to dealing with our genetic predisposition in a more productive manner.

Prevention and support are challenging without communication.  We need to help each other with encouragement, education, and sharing our personal experiences so our friends, families, and the community we live in can benefit and hopefully beat this disease.  There is so much to be gained by connecting with others in a similar situation who can understand the rollercoaster of emotions you are feeling.

I know that privacy within the family or within the community is a deeply personal decision.  The beauty of Sharsheret is that it honors each woman’s decisions, and will tailor their support accordingly.  Sharsheret is breaking down the “Walls of Silence” through family conference calls with its genetic counselor, the national Peer Support Network which matches women with others who share their diagnoses and experiences, an online family tree tool, and providing resources, information, strength, and support.   In my opinion, Sharsheret stands at the forefront of the mission to educate Jewish women and families about the increased risk for breast cancer and ovarian cancer in our community. Thank you for being there!

Reflections For The New Year

I remember sitting in the synagogue on Rosh Hashanah and Yom Kippur as a child, watching the clock and counting how many pages of prayer were left in the service. I wanted to run out when the Rabbi began speaking. And the silent prayer – well, that just went on forever. “Oh my goodness, will this ever end?”

As an adult, I now appreciate the High Holiday services. I love the melodies that unite the congregation into one harmonious voice. The Rabbi’s message gives me much to contemplate. That silent prayer, though, is still a challenge. Occasionally, my private thoughts are comforting and invigorating but sometimes, the silence is too much to bear. Either way, it is in this stillness of my mind that I have learned the most about myself.

My true journey takes place in the quietude. All the events that happen in my life are just the junctures - first steps, graduations, jobs, weddings, children, or illness – are all merely points in time. It is in the quiet reflection that I ascribe the meaning.

When facing ovarian cancer or breast cancer, life may seem to swirl around you – doctors’ visits, scans, treatments, and follow-ups, while maintaining jobs and families. These things impact your family life, your financial well-being, and your emotional and physical health. I suspect that at one time or another you may have thought, “Oh my goodness, will this ever end?”  As Sharsheret Peer Supporter Beverly Levy shared in her National Ovarian Cancer Awareness Month blog post, “I’ve decided cancer is like Whack-A-Mole, the arcade game where you whack a little critter over the head and another one pops up where you don’t expect it.  But just like in the arcade, there are good times along the way.  You don’t know how many moles you will have to clobber, how long it will take, and how you’ll do it – but you will. I can’t enjoy today if all I can think about is tomorrow and I can’t do anything about it anyway so head up, smile on face, and enjoy all the great things life has to offer.”

In this holiday season, I encourage you to take advantage of the stillness, whether in prayer, meditation, or just finding a quiet time to reflect on how this past year has unfolded, what meaning it has held for you, and what your hopes, dreams, and aspirations are as you move forward.  All of us at Sharsheret hope that you will find strength, renewal, and meaning as you celebrate this upcoming New Year.

We Did It!

 
Erica Berthou
13:37:01
Deborah Greenstein
14:29:14
Joel Matalon
15:15:01

Congratulations to Team Sharsheret's first Ironman athletes, who took on an enormous challenge last weekend at the U.S. Ironman Championship NY/NJ. Our amazing athletes completed a 2.4 mile swim, 112 mile bike ride, and 26.2 mile run!  We are so proud of their personal accomplishments and grateful for their incredible efforts in raising awareness about Sharsheret's programs and services.

Do you or someone you know want to swim, bike, and run with Team Sharsheret? We have slots for the Aquaphor NYC Triathlon on July 14, 2013! Join us for a 1,500 meter swim in the Hudson River, 40k bike ride on the West Side Highway, and 10k run through Central Park to the finish line. E-mail athletes@sharsheret.org for more information and to get your slot today.

Biking and Blessings For Cancer Survivors

Just returned from a 90th birthday celebration bike ride from Boston to Newport (Rochelle Shoretz's 40th and my 50th). The cycling group was organized by a friend, Richard Shuster, who has as large a personality as Rochelle's. It was not a charity ride. Instead, these annual Shuster rides are all about pure joy and being mindful of life's blessings. In our group of 40 bikers, there were three cancer survivors and a woman whose daughter is BRCA positive, as well as Andy Seidman, a renowned breast cancer oncologist at Memorial-Sloan Kettering Cancer Center.

The first day had its share of a few treacherous roads but then we navigated on to a beautiful bike path. As I biked alongside Rochelle, she was drafting behind Andy and looked at me and said how surreal it was to be riding on Andy's tail. Just as we pulled into the Biltmore Hotel in Providence, Rhode Island, having clocked 52 miles, the sky opened up and there was a torrential downpour. We considered ourselves blessed simply by the fact that we managed to stay dry.

The second day began with an "official" toast to the "most inspirational rider", who briefly spoke about Sharsheret as I stood beside her clad in my Sharsheret cycling gear. After riding along a 17-mile bike path along the water, the day ended in Newport as we biked into a park bordering the Atlantic Ocean with kids flying kites across the sky. Spectacular!

As I biked alongside my daughter Kayla, who will be college-bound by the end of the upcoming school year, I was reminded of how unsuccessful we were at flying kites when she was younger. I felt blessed not just because kites flew in the sky rather than the threatening showers that were predicted earlier in the morning, but also for celebrating my 50th birthday, biking next to her.

Birthdays take on a more special meaning after a breast cancer diagnosis. It did not surprise me that Rochelle had the physical stamina for the 100-mile bike journey. It was the first time I witnessed how she had the stamina to keep retelling the Sharsheret story. The wheels of joy and embracing life's blessings kept us going. Next year, we will clock the extra one mile to get us to a century!! The year after that we will aim for 120!

Meet Team Sharsheret US Ironman Championship Athlete Joel Matalon

Tammy Bryk, a beloved client and friend told me about Sharsheret, an organization supporting young Jewish women and their families of all backgrounds, facing breast cancer.  This year Sharsheret offered coveted spots for the first ever 2012 Ironman US Championship NY/NJ race.  Instead of securing my own slot, I have chosen to join Team Sharsheret and make what I love to do more meaningful - RACING while raising money to help others.  I listened to Tammy, a committed Sharsheret volunteer, because she is a constant inspiration to me.  Together, Tammy and I successfully completed the 2010 ING Miami Marathon.  When I think of her energy and enthusiasm I am motivated to keep pushing even harder. 

Over the past 16 years I have primarily raced outside of NY.  I've done the 2010 Ironman in Canada, 2008 Ironman Kentucky, and 7 other triathlons.  I've ran 17 marathons in the United States, Canada,South America  and Europe.  I plan on competing in marathons in Detroit, Michigan, in Hamburg, Germany, and Tel Aviv, Israel.  I'm most interested in the Ironman US Championship NY/NJ so that my supporters can come out and watch me race and put Chi Running, the running method that I teach to clients all around the world to practice, for all to see.

Please support me by adopting at least a mile of the swimming, biking and running that I must complete for the 2012 Ironman US Championship NY/NJ.  Help me reach each of  the 140.6 miles and reach my personal goal of raising $14,060 to support Sharsheret’s programs and services that they provide at no cost to thousands reaching out to Sharsheret for support.  Any and all donations are much appreciated.

Meet Team Sharsheret US Ironman Championship Athlete Erica Berthou

It is an absolute honor to be a part of Team Sharsheret.  Rochelle Shoretz is a former colleague, friend, and truly inspirational person.  Sharsheret’s selfless commitment to helping those in need is amazing and I couldn’t think of a better organization to race for!

Every year I make challenges not resolutions.  This was the year that the ironman adventure became a reality.  Ever since my brother competed in his first ironman in China in 2009, I have wanted to emulate his example.  We normally compete together as a team and we spur each other on.  However, this year he will be cheering me on from the sidelines.  I’m so excited even though this will not be easy, but challenges are not suppose to be easy, right?

In the last two years I have done 3 marathons, 1 100K ultra marathon, 1 tough mudder competition and other adventure races.  This competition will bring a new chapter in my extreme sports experience.

Being raised in the northern part of Sweden I was never taught how to swim freestyle.  So to improve, I have been taking crash courses in swimming.  Added to that I spent most of my childhood riding horses and competeing in show jumping.  The learning curve has been steep thus far.

I look forward to competing in Team Sharsheret’s colors.  Please support my efforts to get to the finish and contribute to Sharsheret’s programs and services.

 

Meet Team Sharsheret US Ironman Championship Athlete Deborah Greenstein

I am a granddaughter of a woman with breast-cancer, a friend of women with breast-cancer, a step-daughter of a woman who died from ovarian cancer, and a woman with her own history of biopsies and breast-cancer scares. Women's cancers have touched so many people in my life.  This year, with the help of Team Sharsheret and in honor of all of those women, I will take on one of the greatest challenges of my life.

I competed in my first triathlon over 20 years ago.  Since then, I've competed in sprint and Olympic-distance triathlons, as well as everything from 5k's to trail races on snow, to half-marathons, to bike road races, and everything in between. This summer, I am undertaking my next great challenge to compete in my first US Ironman Championship and on behalf of Team Sharsheret.  Training, preparing and completing the race as part of Team Sharsheret makes this endeavor a significantly more meaningful experience.

I hope you will join me in supporting Sharsheret in honor of both the women you love, as well as the women you don't even know, but who are touched by Sharsheret's vital programs.

 

 

Speaking About the Unspoken Reality of Cancer

My grandmother died in 1995 after a long battle with breast cancer.  In all of the years of her illness, I cannot recall her using the word "cancer".  She spoke of being "sick", "weak", "unwell", and she asked me, on her death bed, to remember her.  "Don't forget me," she would say repeatedly, frail and bald and unlike the confident Bubby who had pushed me on the park swing as a child, arms made strong from years of sewing sweaters in a factory. I remember sitting beside her, law books in my lap as I studied for exams by her hospital bedside, thinking that her request was odd: "Don't forget me".  How could I forget her, my own grandmother, who had helped raise me?

But the reality of my grandmother's generation was that those with cancer were often forgotten. The disease itself was not discussed.  Some whispered about "Yeneh Machlah" - "that disease" - in Yiddish.  Others would refer to the "C word", without actually uttering the word itself.  Fears of "Ayin Harah" - the evil eye - shadowed real conversations about cancer, and concerns about marriagibility among family members forced many into a hiding of sorts.

Eleven years ago last week, I, too, was diagnosed with breast cancer for the first time - 28 years old, an attorney raising two young children.  And sadly, not much had changed in the Jewish community since my grandmother's diagnosis.  Despite the plethora of organizations addressing community needs, there was no Jewish response to breast cancer although 1 in 40 Jews of Ashkenazi descent carries a gene mutation that makes us almost 10 times more likely to develop hereditary breast, ovarian, and related cancers.  New research points to genetic susceptibility among Sephardi Jewish families as well.

I founded Sharsheret, a national breast cancer organization addressing the needs of Jewish women and families facing breast cancer, to fill that void.  In the past 10 years, we have launched 11 national programs, including one addressing ovarian cancer among Jewish families.  We have welcomed more than 1,600 women to our National Peer Support Network.  We have responded to more than 24,000 breast cancer inquiries, presented more than 250 education programs nationwide, and educated students on more than 150 campuses across the country.  We have been awarded a seat on the Federal Advisory Committee on Breast Cancer in Young Women and federal grants to develop programming specific for Jewish women and families affected by breast cancer.

Perhaps even more than Sharsheret has accomplished on its own, I am proud that we have paved the way to welcome neighbors into this once lonely community of cancer advocacy and support.  Today there are more than 30 Sharsheret Supports partners - Jewish organizations that develop local breast cancer and ovarian cancer programs nationwide - adding to the growing Jewish communal response to cancer.

As I mark my 40th birthday today, a two-time cancer survivor, I celebrate not only the life with which I have been blessed, but the lives of those, like my grandmother, whose cancer journeys - no longer a forgotten whisper - have found their voice.

At The Finish Line . . . And Beyond: A Message For Team Sharsheret Triathletes

Just two more days until we hit the West Side Highway, the Hudson, and Central Park for the Aquaphor NYC Triathlon. Months of training, awareness-raising, and fundraising will culminate at the finish line. You’ve accomplished so much already – and our work together has only just begun! As Team Sharsheret athletes, you have become ambassadors for the work that we do – supporting families, educating communities, enhancing the care that medical providers offer their young cancer patients.

This year, we debuted a short film, “It Takes a Team”, that features our incredible athletes. Although it may not really take a team to finish the triathlon, it certainly does take a team to do all that Sharsheret does. We reach more women because of the awareness you raise. We launch more programs because of the funds you raise. Sharsheret is the product of all of our efforts.

So when you cross that finish line on Sunday, we’ll be cheering you on – for what you’ve accomplished already, and for what we will continue to do together in the months and years ahead!

Have a great race!

 

 

The Strength Of Survivors

I never signed up for this…..and one of the major items on that list was cancer.   So you’d think—and  I certainly thought—if I was fortunate enough to survive, the last thing I’d want for the rest of my life was to have anything to do with cancer ever again.

I never would have imagined that I’d feel the opposite, that cancer would occupy such a huge place in my heart and my life so many years after I thought I would leave it behind.

It’s not that I constantly dwell on my own experience; I don’t.  It’s that I want, almost NEED, to be involved, to make a difference in the lives of other people with cancer, as corny as that may sound.

And many,  many other survivors feel the same way.

In the years since I had cancer, survivors have become more activist as individuals and an increasingly powerful force as a group.  Survivorship has matured as a scientific field of study, and so has advocacy on behalf of survivors.

At the National Cancer Survivorship Research Conference which I attended recently, twenty survivor advocates received scholarships—coming  together from all over the country, to meet and learn from the experts, and each other—and take what they learn back to their organizations and their communities.

Part of the group of Survivor Advocates

 

Many advocates have had cancer themselves.  Probably each of them has a story that could break your heart, and then lift it back up.  These are just a few examples:


Tonya Pan, diagnosed with Non-Hodgkin’s Lymphoma at age 15, endured two years of chemotherapy while going through high school.  Today she has a leadership role in the American Cancer Society; and is studying for a Ph.D. in Clinical Psychology, planning to be a research professor, and help improve the lives of cancer survivors.


Rochelle Shoretz, an attorney and a mother of two children, clerked for Supreme Court Justice Ruth Bader Ginsberg before being diagnosed with breast cancer at age 28.  She founded an organization for young survivors; and although she is now  living with stage IV cancer, she devotes her considerable energy and talents to advocacy work.


 Susan Leighton survived stage III ovarian cancer not just once but twice.   Today she plays an active role in representing ovarian cancer survivors and promoting legislation on their behalf, including testifying before Congress.


Pat Gavin survived both pharyngeal cancer and melanoma.  Today he merges his experience as a survivor with his background as a pharmacist,  bringing the voice of the patient to the research table.


Joya Harris is a young mom of two children and a breast cancer survivor.   She uses her Masters in Public Health and her personal experience to help bridge the gap between what happens in the laboratory and how the science will affect patients.


Amy Geschwender is a survivor of brain cancer.   She holds a Ph.D. in cell biology and has studied cancer as a research scientist, which makes her perspective on cancer and her advocacy work both professional and personal.

They all exemplify something I believe: that one key component of survival is the ability to look beyond yourself.

In a session on resilience, Dr. Keith Bellizzi explained that cancer researchers have always approached survivorship based on the deficits survivors have.  He suggested an additional approach based on strengths—–to draw out and build on the strengths that survivors have.

The people in this  group are proof of those strengths.  I felt privileged, and inspired to be with them.

 

Reprinted with permission from http://blog.darrylepollack.com/2012/07/the-strength-of-survivors/

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