Our Voices: A Blog by Links, Callers and Volunteers

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.

Thank You For Sharing Our Worldwide Message

Good Luck To Team Sharsheret Athletes Participating In Races This March!

Dear Athletes,

Tomorrow, two of you - our incredible athletes - will compete in the Jerusalem Marathon, marking Team Sharsheret’s participation for the first time in the Israel race.  This very same week, we’ll cheer another 22 of you - our Half-Marathon athletes - to the finish line in New York City.  Sharsheret has gone global, with supporters and athletes heralding from more than 12 countries, and participation in two international competitions in just one month.

Breast cancer is a Jewish community issue worldwide, with 1 in 40 Jews of Ashkenazi descent carrying a gene mutation that may increase the likelihood of developing hereditary breast cancer, ovarian cancer, and related cancers.  You carry that critical message with you as you race in support of Jewish women and families this week.  Your hot pink Team Sharsheret gear is not just a show stopper – it’s the show itself, a display of solidarity with our community of families at risk of or diagnosed with a disease that touches virtually every Jewish family.

This year, ours is a global message – one that will make its way around the walls of Jerusalem and through the streets of the Big Apple.  With your support, and the critical dollars you’ve raised, we’ll continue to carry the message near and far.  And in the years ahead, we know that wherever in the world you may walk or run, you’ll be sharing Sharsheret with those whose lives you touch.

With deep gratitude,
Rochelle

Make Some Noise

There is proper decorum when entering the sanctuary of a synagogue or temple. We are expected to sit quietly and the Rabbi may even suspend the service until all congregants remain silent.

This is definitely not the case on Purim. On this day, we enter the sanctuary dressed in costume and we are permitted - actually, expected - to raise our voices and drown out the reader of the Megillah (Story of Esther). We bring noise makers, drums, and stamp our feet to drown out the name of Haman, a man who sought to destroy the Jewish people. The commotion of this service culminates in joy and celebration.

Often, women calling Sharsheret feel very emotional. It is sometimes difficult to speak through the fear, anxiety, or the crying. Inevitably, women apologize for their display of emotion. Is there a proper decorum when facing cancer? Is there an expectation that women should always remain calm when discussing their situation?    

We learn from the holiday of Purim that displaying emotion when our well-being or survivorship is threatened is part of the journey. It’s healthy to let loose once in a while. When overwhelmed with emotion, your instinct may be to stop yourself from feeling. Instead, embrace the emotions. You may find yourself in a place stronger than that from which you started. So ladies, bring out your noise makers, stamp your feet, cry out loud, and when you have finished, find the joy.

Third Annual Pies for Prevention Thanksgiving Bake Sale!

Do you love Thanksgiving but hate all the preparations?!?
Order our delicious pies to save time and support a worthy cause! 

All Bake Sale proceeds will benefit
 
and the
Stephanie Sussman and Ann Nadrich Memorial Fund
established to support programming for
Jewish women and families facing ovarian cancer.


Baked Goods
Pumpkin Pie, Pecan Pie, Chocolate Pecan Pie, Chocolate Chip Cookie Dough Pie, and Pumpkin-Cranberry Bread
Price
$20 per item
Order Deadline
Monday, November 14, 2011
Order Information
Orders can be placed online at:
Teaneck, NJ Orders - https://www.sharsheret.org/BakeSale/Teaneck
West Orange, NJ Orders - https://www.sharsheret.org/BakeSale/WestOrange
New York City Orders – https://www.sharsheret.org/BakeSale/NYC
Long Island, NY Orders - https://www.sharsheret.org/BakeSale/LongIsland
Atlanta, GA Orders - https://www.sharsheret.org/BakeSale/Atlanta
Palo Alto, CA Orders - https://www.sharsheret.org/BakeSale/PaloAlto
Sharon, MA Orders - https://www.sharsheret.org/BakeSale/Sharon

All ingredients are certified kosher and pareve.  All baked goods are homemade and baked in a kosher kitchen. 

For more information, please contact:
Sharon Wieder - srwieder@optonline.net or 201.837.7837 
Adeena Sussman - adeenasussman@gmail.com  or 917.374.8456

Meet our Team Sharsheret ING NYC Marathon Athletes: Natie Fox and Tiffany Diamond Lebowitz

It is very meaningful to me to run in support of Sharsheret.  Like most people, I have family and friends who are survivors of breast cancer, and others who unfortunately did not survive.  I have seen the tremendous struggle these brave and strong women went through and go through every day.  I also have the unique position of being a women’s health care provider (Maternal-Fetal Medicine, aka high-risk OBGYN) and I have cared for many pregnant women who are survivors of breast cancer as well as women newly diagnosed during pregnancy.  The challenges they face are indescribable.  I know very well, however, that in order to work through the diagnosis, the medical treatments and support need to be coupled with outstanding social and spiritual support, which is where Sharsheret excels.  Whatever difficulties I face with my training pale in comparison to those experienced by women in need of Sharsheret’s support, and I just hope that through my training I can make a small contribution to the Sharsheret team effort.

One may wonder why would a busy high-risk obstetrician and father of four ever train for his first marathon?  I honestly have no clue myself, but here we go. My wife, Michal, is also running the marathon for the first time this year.  She is my inspiration. So game on!! 

 


Ever since I moved to the New York area (and subsequently New Jersey), I have become familiar with the tremendous void that Sharsheret has managed to fill for Jewish women and their families, of all backgrounds, facing breast cancer. I, personally have known women that have faced breast cancer or are at high risk for breast cancer. Their emotional and physical needs were met by all that this organization has to offer. Sharsheret's multipurpose, personalized approach, is designed to guide and empower women of all ages to face their illness head-on. Through Sharsheret's unique "peer support network", deep friendships have been fostered, and medical resources have been shared.

I have NEVER run a marathon in my life! I will train with discipline and perseverance (and hopefully cross the finish line before nightfall), knowing that I am running for a cause I truly believe in. Please help me achieve this personal goal to cross the finish line, while supporting Sharsheret's goal to provide continuous support and guidance to women and their families facing breast cancer!

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