Sharsheret

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/

What are we doing at this conference?

I’ve just returned from the 2012 ASCO Annual Meeting – one of the largest cancer-related conferences organized by the American Society of Clinical Oncology.  It is my second ASCO Meeting and my fourth conference this year.  It had me thinking about the sheer number of cancer-related conferences I have attended as a cancer patient, survivor, advocate, and Sharsheret staff member since I was first diagnosed with breast cancer 11 years ago.  Let’s just say: I’ve collected (and donated!) more canvas bags and pens than I will ever be able to use.

In 2012 alone, Sharsheret staff members have attended or presented at more than 13 conferences nationwide – gatherings that have addressed cancer genetics, young women facing breast cancer, women living with ovarian cancer, cancer and culture, and survivorship.

Why do we do it?  Because the information we learn and the connections we make all benefit you - the women and families of Sharsheret.  Whether we hear about new research in cancer care or find an organization that can provide you with a resource you may need over time, every conference offers us new “nuggets” to improve the services and care we provide our Sharsheret community.

Below, I’ve answered some of the questions you may have about cancer conferences.  If you’ve got any others, please feel free to contact me directly at rshoretz@sharsheret.org.   And if you decide to join us on the road, rest assured you’ll leave with “nuggets” of your own . . . and, at the very least, a new canvas bag.

What do we do at the conferences we attend?

Sharsheret staff members attend conferences as students, presenters, and exhibitors.  Our clinical staff members bring back new research, resources, and services that can benefit the families we serve.  As presenters, we share Sharsheret’s best practices with the national cancer and Jewish communities.  At exhibit halls, we connect with other advocacy organizations, health care providers, and Jewish community liaisons to broaden Sharsheret’s reach.

How can I access information and research that is presented at a conference?

In addition to connecting with our staff, many major conference organizers share slides, presentations, or videos with the public after a conference.  Visit the conference website to see if materials will be available to you.  For example, if you want to learn more about the breast cancer or ovarian research presented at the ASCO meeting this year, visit www.cancer.net for short summaries.  Always contact your health care provider with any questions you may have about your own health.

How can I determine if a cancer conference is right for me?

We let you know about upcoming conferences that might be of interest to you on our website and in our bi-monthly e-updates.  Feel free to call us for more information and to discuss whether a particular conference may be of interest to you. 

Can I afford to attend a conference?

Many conferences offer scholarships or travel waivers and some conferences are even free of charge. You can find more information by going to the conference website, or speaking directly to the person organizing the event who may be able to accommodate your financial circumstances. 

Know of a conference we should attend?

Share it with us!  We appreciate learning about important conferences in your community.  Many of our volunteers help us distribute materials at conferences nationwide.  Contact Rebecca Schwartz, Director of Community Engagement, at rschwartz@sharsheret.org with conference details.

THRIVE With Sharsheret On National Cancer Survivors Day!

National Cancer Survivors Day, this Sunday, June 3rd, is the perfect time to join our new program, Thriving Again, for young breast cancer survivors with these 3 easy steps:

  • Participate in an online discussion and provide your valuable input on the development of our new survivorship program on Wednesday, June 20th from 8:00 -9:30 p.m. EDT.  If you are interested in participating, or know someone who is interested, please contact Program Coordinator, Danna Averbook.
  • Join more than 1,500 survivors who have taken our National Survivorship Survey and help shape our program.  Take the survey today! 
  • Watch our survivorship video and share the link with your friends.

Unwrapping Your Gifts

Every year on the holiday of Shavuot we celebrate receiving the Torah – a gift given to the Jewish people more than 3,000 years ago.  Most of us have been the recipients of kindness and generosity by virtue of our membership in the Jewish community and we, as a people, embrace the strong value of giving back in kind.

There are many layers to the giving and receiving of gifts.  Gifts can be given to mark a celebration or simply as a loving gesture. Some gifts, though offered with love and good intentions, may not meet your needs and the gift gets passed along – better known as the art of re-gifting. Sometimes, gifts are given with strings attached. And perhaps the purest form of gift-giving, are the gifts we give to ourselves.

I’ve heard some of you remark that being diagnosed with cancer has been a gift – having a second chance at life, appreciating relationships, and discovering what really feels important to you. Many of you don’t find cancer to be a gift at all. In fact, it’s a gift you would return without hesitation – with or without a refund.

Most of you fall somewhere in between. You would prefer having skipped the whole cancer thing all together, but have discovered many gifts along the way -  the gift of loving kindness, the gift of insight, and the gift of life.

In the hub of Sharsheret, I have witnessed tremendous and meaningful exchanges of gifts - words of wisdom passed along from women further down the road to those newly diagnosed. I have seen the selfless donations of time and money to support women and their families living with cancer.

Without a doubt, there are strings attached to cancer – but once untangled, most of you have given yourselves the greatest gifts of all. You have discovered inner strength, you have established a greater balance in your lives, and you hold a deeper appreciation of life and love.  And when these gifts were sometimes hard to find, you reached out to Sharsheret and opened yourselves up to receiving the support and guidance of our community.

I hope on this holiday of Shavuot, you kick up your feet, grab yourself a nice piece of cheesecake, and take a moment to unwrap all the wondrous gifts in your lives.

My Mom – My Rock

When I was 20, my parents came to see me unexpectedly at college. They told me that my mom had stage 2 breast cancer and was going to be having a mastectomy and chemotherapy in the coming months. I was scared for her and I was scared of losing her. My mom, my rock, was sick. She was the one who was always there for me, taking care of me, and now I had to watch her go through the process of surgery and treatment. The fighter that she is, she made it through with flying colors! Twenty years later, my mom is healthy and cancer free.

At the age of 20, you don’t really think cancer can happen to you but it was always in the back of my mind and I found myself constantly wondering, “what if?” So when I turned 35 I started going to a special program for women who are at increased risk for breast cancer. Imagine my surprise when 2 years later I was diagnosed with DCIS. Now my mom would have to watch me go through the same surgery, the emotional and physical pain of having a mastectomy. I opted for a double mastectomy with immediate reconstruction. My husband and I wouldn’t have been able to get through it without the love and support of my mom. She was there for me, taking care of my 3 kids, getting them ready for camp, driving them to their activities, cooking, and cleaning. At the same time, she made sure that I was comfortable and was a shoulder to cry on when I needed her support. She also told me about Sharsheret and the Link Program. I connected with Sharsheret and was able to speak to other women who had been through my same situation and they helped me during this difficult time in my life. They were able to guide me in speaking about my cancer with my kids. And of course, I will never forget the day I received my Busy Box and beautiful neck roll pillow from Sharsheret. I cried because I was so happy that people who had not even met me in person would care so much about me!

My mom is and will always be my rock. I would like to wish her and all of those other special moms a very happy Mother’s Day!

BRCA, Boys, and Boobs

Oh dating! People say it's fun, but is it really? The butterflies, bad dates, labels, unreturned phone calls. I would call it hard, to say the least. When you've tested positive for the BRCA gene at 24, dating is even more challenging. I kept asking myself, who would want to date me with my increased risk for developing cancer? This is where I was about two years ago.

I met Dovid on a blind date and entered the experience with a ton of preconceived notions. I assumed no guy would want to date a BRCA positive girl. It took me almost 3 months to tell him about it. I built it up to be this undefeatable and overwhelming situation that he had every right to walk away from.

Boy was I was wrong! He took everything in stride. He told me about how he lost his mom to breast cancer, and how he thought I was making good decisions. He tackled every aspect with me, together, and made me laugh along the way. He was there with me and pushed me to strive for better doctors and better outcomes. He helped me remember all the other things that make up who I am; sarcasm, Harry Potter, brightly colored sneakers, and Scrabble, not just BRCA. Things that make me Amy.

Dovid showed me that he loved all of me, even the parts that I assumed he wouldn't. I learned an important lesson: Don't assume - it really gets your nowhere. Accept BRCA as a part of your life, but don't let it define you. There is so much more to life that's in store. At the age of 27, the night before the second surgery of my prophylactic mastectomy, Dovid proposed. I got my fairytale. I was fortunate to find Dovid, who supported me through my experience, and I’m excited to join Sharsheret’s national Peer Support Network so I can give back and support other Jewish women dealing with BRCA.

Finding Strength In My Local Community Program

On Monday, April 2nd 2012, I had the privilege of being asked to speak at a Sharsheret Supports Breast Cancer Symposium at the Ruth Rales Jewish Family Service in Delray Beach, Florida.  This one of a kind program was co-sponsored by 10 large companies and organizations, including our own, Sharsheret.

More than 150 community members attended the event and my breakout workshop on Sharsheret’s programs was well attended by women, young and old.  I was diagnosed with Stage 3 breast cancer in May of 2006, just 7 months after my mother passed away from breast cancer.  As a motivational speaker and powerful advocate of personal empowerment before, during, and after illness, I believe that it is important to teach other women to grab hold of their courage, step out on faith, and be the best they can be when faced with a diagnosis of breast cancer.  To be a Cancer Warrior.

Most of the women who attended this extraordinary program were breast cancer survivors.  I was overwhelmed by their stories.  In particular, one woman told us the story of her 23 year-old daughter who was diagnosed with stage 3 breast cancer and was BRCA Positive.  Thanks to Sharsheret, this young girl does not have to face her diagnosis alone.  She has an organization that can offer peer support, up to date information about her treatment, access to a genetic counselor, support for her caregivers, and a link to other healthcare professionals.

To say the least I am grateful for having won my battle, but also humbled and amazed at the fragility of life.  I am awed by the women before me who have also won this battle.  I celebrate the courage of those we have lost. 

I now understand that when you are faced with a challenge in life, you have a choice: to find the hero within, or to give up.  By choosing to uncover your own courage, strength, and determination, you become a role model for others.

Keeping The “Seder” In Your Life

In the Passover story, we learn that the Jewish people are told, from an authoritative and reliable source, that they are to leave Egypt immediately in order to save their lives. They quickly gather their families and belongings, including unleavened bread which had no time to rise, and race out of Egypt. There was seemingly no time to think or make plans. Thus, the journey toward well-being begins for the Jewish people.

The center of the Passover holiday is the Seder, the Hebrew word for order. I can not imagine that the Jewish people felt particularly orderly during this time. Yet, somehow, they managed.

Leave Egypt, receive the Torah, go to Israel – that was the order. As we know, even the best laid out plans, even under reliable authority, have twists and turns. The Jews had to deal with the Red Sea challenge and travel in the desert. There was the whole golden calf debacle. They regrouped, took a breath, and gained wisdom, as they received the Torah. And eventually, they reached the land of Israel.    

The journey is similar when diagnosed with an illness. The doctor tells you that you have cancer, which catapults you immediately into action mode. You may be scrambling to make phone calls, set up appointments, and make logistical arrangements.

Surgery, treatment, then survivorship. That’s the seder – that’s the order.  For many, there are unexpected occurrences such as infections post-surgery, changing the medication regimen, needing to choose a different reconstruction option, or perhaps a recurrence. The lesson we learn from the Jewish people is that as important as it is to have order, allow for unexpected challenges. Take moments along the journey to self-reflect and to gain wisdom. Remember that you may second guess yourself.  Trust your treatment team, trust your support system, and most importantly, trust yourselves. You are resilient. You will find your way.