Our Voices: A Blog by Links, Callers and Volunteers

United Under One Goal

I started my internship at Sharsheret one month ago, without knowing what type of experience I was walking into or the extent of Sharsheret’s reach.  As I was given a tour and introduced to the Sharsheret staff, I noticed right away the unique atmosphere of Sharsheret - everyone was personable, enthusiastic, and motivated (and not to mention, fun!).

As Sharsheret is a fast paced office, constantly moving to find new ways to expand its influence and help Jewish women in need of support, I was instantly given my projects for the summer.  I was fortunate enough to contribute to and work within the various teams of Sharsheret, such as the support and outreach teams.  One of my favorite projects this summer included working on two posters that will be presented at the Academy of Oncology Nurse and Patient Navigators annual conference and the Critical Mass annual conference.  Through creating these posters I learned about Sharsheret’s Thriving Again Survivorship Program and other support and educational resources that Sharsheret has created and made available to young breast cancer survivors.  I was also fortunate to sit in on and participate in Sharsheret’s support team meetings.  In culmination of my time at Sharsheret I was able to present and update the support team on multiple new medical studies regarding breast and ovarian cancer.

Through working within the various branches of Sharsheret I saw firsthand how all the different aspects of what Sharsheret does as an organization are united under one goal: to help each individual woman that reaches out to Sharsheret.  Every woman is given the support and resources tailored to her unique story.  As for me, Sharsheret has played a part in building my story by allowing me to learn from the powerful people that work here and allowing me to contribute to such an influential organization.

My First Triathlon

I went to high school with Rochelle Shoretz and she epitomized what it meant to be larger than life.  Three years ago, I met Rochie for breakfast and she planted the seed. She told me, “You should do a triathlon. It will be fun.”  At the same time, a friend said I should do one, saying I "had the personality for it."

At the end of last summer, as I reached a crossroads in my life, I decided it was the right time for a welcome distraction- to train for a triathlon. 

But I didn’t think I could do it.  I knew that although I could bike, I could run only half a block.  I couldn't swim a straight line and got out after one lap thinking I was having an asthma attack.  So what helped me? Purchasing the right gear, hooking up with the best coaches and consistently practicing.  The second lap and the first half mile is the hardest for me. But once I get past that mark, I just go.

As part of Team Sharsheret, I will be completing my first triathlon at West Point on August 16th. I aim to complete the race in Rochie’s memory, in honor of my grandmother, a breast cancer survivor and for my father, a physician like no other who has touched the lives of countless women affected by breast cancer.  And finally, I'm doing this for myself.  Because I don't have to be first.  I just have to finish. 

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Finding My Story

Two months ago, I walked into the Sharsheret office on the first day of my summer internship. I had no idea what to expect. What would the people be like? Would I be dressed right? What would I be doing? At that point, there was no way I could have known what kind of summer I was in for.

Day 1 started and we were off! After an incredibly thorough orientation, I was given a pile of Sharsheret’s resource materials and told to take the afternoon and really get to know Sharsheret. My supervisor told me that if I was going to work for Sharsheret all summer, I should know more about what it does so I would develop a connection to the organization. I took her advice, and she could not have been more right. By the end of that first day, I definitely had a good picture forming of what Sharsheret is. Throughout the summer, this picture got clearer by the day as I saw the care that Sharsheret shows to the women and families it serves and felt the warmth it shows to its employees. This office is a family and a community, and I feel fortunate to have been welcomed into it.

One of the projects I worked on this summer was helping develop presentations for use on college campuses. An important aspect of this project was the “Sharsheret story”. Over the course of the summer, I heard many different Sharsheret stories, and as I wound down this project, I began thinking a lot about my own story. Even though I’ve done a lot with Sharsheret this summer and could easily tell a story about any number of things, I couldn’t quite put my finger on what my story was. It wasn’t until I sat down to write this blog post that I finally found my story. My story is one of movement, from confusion to confidence. I started this summer with a lot of questions, both about this internship and about my future as a social worker. I leave Sharsheret certain; certain that I did meaningful work this summer, and certain that I want to dedicate my career to Jewish communal service. Thanks to this internship, I know now that I am on the right path. This has been a wonderful environment in which to have new experiences and learn new skills and I’m excited to take all that I’ve gained here into my future career. Thank you to everyone at Sharsheret for a great summer.

Meaningful and Motivating

Judy Zwillenberg and Sharon WeiderThis summer, the goal of my internship was to expand Sharsheret’s Ovarian Cancer Program. Ovarian cancer can be difficult to detect, since many of its symptoms can be attributed to common illnesses. As a result, most ovarian cancers are unfortunately diagnosed at advanced stages. Additionally, there is not enough information available for women newly diagnosed with ovarian cancer or for ovarian cancer survivors; but Sharsheret plans to change that. My main project this summer was to develop a Thriving Again survivorship kit for ovarian cancer survivors. The kit provides women with the opportunity to learn more about survivorship and to create a personalized survivorship care plan. Women can request culturally-relevant information that is tailored for their ovarian cancer journey, such as materials on the fear of recurrence, caregiver support, and exercise during treatment. This kit will bridge the gap in available information for ovarian cancer survivors and provide women with the support they need during their ovarian cancer journey. The Thriving Again kit is now available for preorder, so contact Sharsheret if you’re interested in receiving your kit this fall.

To spread the word about Sharsheret’s Ovarian Cancer Program, I also developed a plan and conducted outreach to prepare for Ovarian Cancer Awareness Month in September. I was in contact with hospitals that serve women with ovarian cancer, organizations having events in September, and other groups interested in learning more about Sharsheret. These connections foster collaboration with other ovarian cancer organizations and disseminate information about Sharsheret to communities across the country. Hopefully, more women will know that they can turn to Sharsheret for ovarian cancer resources and support.

Working at Sharsheret this summer has been especially meaningful and motivating for me, as I started my internship one week after the passing of Rochelle Shoretz, Sharsheret’s founder. I have seen firsthand how Sharsheret continues to go above and beyond to provide meaningful support to women during this difficult time. I feel privileged to have been a part of Sharsheret’s dedicated and passionate team, and look forward to seeing Sharsheret continue to grow and serve women facing breast cancer and ovarian cancer.

Swim – Bike – Run – Repeat

If someone had told me that one day I would run to spin class, spin, and then run three miles home, I would have thought them insane. Yet, that was just one training day of many in preparation for the 2015 NYC Triathlon. Three years ago, I was diagnosed with breast cancer and in addition to the typical fears, I thought I would lose the one thing that defines me - my vitality. Not in an athletic sense, but in the energy I brought to my work, my family, my life. It was an extremely difficult time, but with the support of wonderful friends & family and amazing organizations like Sharsheret, I was able to regain my good health and am now stronger than ever.

Along the way, it was not uncommon to hear from others that my situation was “not fair.” I was relatively young, I took care of myself, and I had so much more to accomplish. However, I came to understand that what’s really unfair is the person who is diagnosed with cancer and does not have a support system in place – no friends to lean on, no family to rally around, no resources to provide what’s needed – that’s not fair. So, as part of Team Sharsheret, I will swim in the Hudson, bike the West Side Highway, and run in Central Park not only as a personal victory over cancer, but to show other women going through the same ordeal that they are not alone.

The Key To Being A Good Link

I was diagnosed with breast cancer almost 10 years ago and have been fortunate to be a part of the Sharsheret family since my diagnosis.

While I have been a link many times, I have been a caller only once. When discussing my experiences as a Sharsheret link, I have to first think back about my one call to my link and what made the conversation so good for me.

I was given the name and number of my link shortly after my diagnosis and as you can imagine, I was eager to speak to someone who had been through what I was yet to experience. When I called, I was greeted by a warm voice on the other end of the line. It had been 5 years since her diagnosis and she was cancer free and feeling great. I asked many questions and my link answered them to the best of her ability and from her perspective.

Thinking back to that conversation, it had a profound impact on my approach to my medical treatment and on my prognosis. The crazy thing is that today I do not remember my link’s name and we only spoke once.  So what made her such a good link and what lessons did I take away from our one and only contact?

The key to being a good link is to be a good listener. Many of the callers that I have spoken to have wanted to tell me their story, but even more so, they have wanted their questions answered. I try to listen to what they are asking and to not give them too much information or information that is not relevant, as not to overwhelm them.

Another important aspect of being a link is honesty. There is no sense in sugar coating what might be difficult down the road. On the other hand, being honest that certain things may not be as bad as would be expected is okay as well.

Another important aspect of being a link is to not feel like you have to have all the answers. As a link, you want to be able to have all the answers but I have found that that is not always the case. There have been times where I did not have the information the caller was requesting and the best thing to do in that situation was to be honest, and recommended that they call Sharsheret to help them with those issues.

What I took away most from the conversation with my link so many years ago, and what gave me strength to face the difficulties ahead was that she was 5 years passed her diagnosis, and leading a happy and healthy life. For me to know that someone who had the exact same diagnosis that I had and treatment I was about to experience was a survivor, was of upmost comfort to me and incredibly empowering. Though I do not say these things to callers, I hope that I convey these feelings – you will get through this and hopefully be a stronger woman for having gone through these difficulties.

A Eulogy for Rochelle A”H: The Ride of a Lifetime

Before I begin, I would like to say a few things to Rochie – I want to ask for mechila (forgiveness) for anything I may have done and said. I would also like to share my immense gratitude for everything you have taught me and shared with me these past 13 years and, finally, I want to reaffirm what you already know, that I, along with the Sharsheret Board and staff, will dedicate ourselves to continuing the critical work you loved so much. Last week you said to me, “Sharsheret is saving my life. It is one of the last things that brings me true hanaah (pleasure) in my life”.

Working with Rochie was the ride of a lifetime, challenging me and the amazing team at Sharsheret to accomplish more than we could have ever imagined. She made the unthinkable a reality. Rochie had a vision – to create an exceptional organization (she would not accept mediocrity), an exceptional organization to support Jewish women and families and provide them with the support when they needed it with dignity, with professionalism, with compassion. In just 14 years, Sharsheret has grown from a handful of volunteers to the premier national organization for Jewish women and families facing breast cancer and ovarian cancer. But 14 years on Rochie time is not even 25 years in regular time. She was the ultimate motivator and if you were joining that ride with Rochie you had to understand that there was no time to waste when it came to caring for the women and families of Sharsheret and educating the community at large. But at the same time, she would emphasize the need to literally block out time to think; to make sure what we are doing is right and everyone who connected to Sharsheret is important, is a link in the chain. The answer at Sharsheret is always yes, we can help. Following Rochie’s lead, no email goes unread, no text unanswered, no Facebook post ignored.

Speaking with Sharsheret Board members last night, we tried to describe what it was like to work with Rochie. Linda described Rochie as something like a magnetic field that drew everyone to her to join her in her efforts. And, while she was persuasive, Dana added, she also respected those who would challenge her. In fact, Rochie would take conflict and turn it on its head. She taught us that we don’t shy away from conflict, we confront it. I remember a few years back; a man saw a photo of Sharsheret on Capitol Hill and misunderstood this as some political issue. He then sent an angry message to the Sharsheret main email to express his disappointment with the organization. Instead of simply ignoring this seemingly crazy comment, Rochie reached out personally to respond. After speaking to the irate emailer, he ended up thanking her for reaching out to him, and has become a strong supporter of Sharsheret. She explained that if someone is so angry that they need to reach out and spew harsh messages, they must be passionate about the cause. We need to embrace that passion and turn it into something positive. 

And Rochie was passionate about expressing gratitude. If you ever received a personal note from Rochie you have likely saved it. She knew just the right words to say thank you to make you feel like you made a difference. And I know today she is tremendously grateful to all those who helped her realize her vision. As she often said, "Sharsheret is thriving not because one woman founded a national organization, but because that organization’s seeds were planted in this community who use acts of Chesed, of kindness, as the yardstick with which to measure extraordinary contributions – women and men – many of you who are here today, were committed to Sharsheret.” And the consequences of your contributions will undoubtedly be enduring. 

I could stand up here for hours to describe Rochie and her boundless energy, her contagious laughter, her unmatched genius, but I would like to end with the very first message Rochie shared with me and probably the most meaningful.

13 years ago I went to my local synagogue, Bnai Yeshurun, to hear her speak about the founding of Sharsheret. As she ended her presentation, she shared an insight into Shabbat candle lighting, that since her diagnosis, had taken on greater meaning. Every Friday night for years she asked God in the Y’Hi Ratzon prayer following her blessing on the candles: “Vezakeini legadel banim u'vnei vanim chachamim u'nivonim, o'havei Hashem, yir'ei Elokim, anshei emes (grant me the ability to raise my children and grandchildren to be wise and understanding people who love God, who are God-fearing and honest).”

And for many years, she focused on the attributes she wanted her children to have. She wanted them to be wise and understanding people who love God, who are God-fearing and honest. After she was diagnosed with breast cancer, her focus now had been on two other words in the Y’Hi Ratzon prayer to which she previously had not given adequate weight: “Vezakeini legadel (grant me the ability to raise my children)."  She had been focused on all that she wanted her children to become, but had glossed over the fact that, above all, she needed to be Zoche (meritorious) to raise her children.

Rochie, as we look at Shlomo and Dovid, and they stand taller than 6 feet today, I think it is fair to say that you were zocha legadel (meritorious to raise your children). Over the last 14 years, you have helped them grow from small boys of 3 and 5 to the wonderful young men they are today, with the values stated in the Y'hi Ratzon prayer, wise and understanding people. You recently told me that you wanted to be a survivor, and to you, survivorship meant grandchildren.  You often referred to Dalia and Efraim’s children as your grandchildren. But rest assured that your love, strength, and values will be instilled by Shlomo and Dovid in your grandchildren. They will spend hours looking at the beautiful Bar Mitzvah and Europe trip albums you so lovingly created these last few months, they will feel your energy as your boys sing and dance the way you did with them in your kitchen. And your legacy will also extend beyond your own grandchildren to all of our grandchildren. All those in the Jewish community who have been touched by you, those who say that Sharsheret saved them in so many ways, will share their experiences with their children and grandchildren for many years to come. That is your legacy.

Rochie, we will all miss you terribly, but we will always have you with us. We love you.

Faith is What Kept Me Going

Excerpted from Mara’s NYTimes blog

Breast Cancer... two simple, yet powerful words! They have always been a part of my life. My mother and grandmother both died from breast cancer, both too early in life. I spent my childhood living through breast cancer. I began having mammograms at the age of 30 because of my family history. In early 2004, my husband and I were blessed with the birth of our beautiful daughter. Shortly after I stopped breast feeding I went for a routine mammogram. There it was - the cancer had arrived! Luckily, it was caught extremely early.

I decided to have a bilateral mastectomy with reconstruction. My margins came back clear; I did not need any additional treatments. Genetic testing came back negative for BRCA1 or BRCA2. I believe I am a carrier of a gene that is yet to be discovered.

My story does not end there, two years later in October 2006, I received word that my 12-week-old fetus was viable. After experiencing two miscarriages, my husband and I were overjoyed. One day, I performed a breast self-exam to what was left of my breast tissue. As I was feeling about just where my new tissue met my old tissue, I felt a small ‘thing.'

I was able to see my local doctor immediately. She performed an ultrasound and biopsy on a Friday morning. By Monday afternoon I was diagnosed with my second bout of breast cancer in three years. The question of what to do and when became even more critical. This was a new occurrence. After many doctors’ visits, my husband and I decided that I would have the tumor removed and start chemotherapy at week 22 of our baby's gestation. Yes, I was nervous and yes, I was scared. But I have always had faith, and faith is what has kept me going through out this whole journey. On March 22, 2007, our son arrived. He was four weeks early, so my treatments moved forward. He had a full head of hair, a good weight and powerful lungs. I am done with chemotherapy, radiation and Herceptin. I have gotten that "clean bill of health." Each day as I look at my children is another accomplishment and a blessing.

The Results That Would Change My Life Forever

When I was 10 years old my mother was diagnosed with breast cancer. She was 37. We are Ashkenazi Jews with no other family history of breast or ovarian cancer. I am now 38 years old and single, hoping for a family one day.

Growing up, my mom was constantly fearful her cancer was genetic.  During my 20s the BRCA mutation was discovered but my family was never tested. Even after countless doctors reviewed our family history. As the test became more broadly known, some casually mentioned BRCA, but no one properly educated us on what it actually meant for my health or the high probability my mother was a carrier. A doctor I was seeing for possible fertility issues felt my problems could be related to a BRCA mutation (an opinion not shared across experts) and explained in greater detail what a mutation might mean for me. This conversation left me scared enough to move forward with testing.

During early fall 2014 I met with a genetic counselor. A few months later I agreed to a blood test and in December received the results that would change my life forever. I was positive for the BRCA1 mutation.

Upon first hearing this news I was devastated - Would I have a family? Would I be able to date again? Would anyone understand my decisions?  My genetic counselor shared the names of a few organizations that educate and provide peer support for women and families at risk for hereditary cancers, including Sharsheret. When I woke up in a panic one quiet day at the end of December, I dialed through the list of names. Most were closed or not willing to speak without an appointment. This was not the case at Sharsheret. Despite not being a helpline, a kind voice listened to my story and consoled me as I told her about concerns and fears I was not yet ready to share with friends or family. Without her I am not sure how I would have survived that day. I still left had many unanswered questions and fears but was comforted to know there were other women like me who have received the same horrible news, have had the same thoughts and questions, but today are happy and most importantly, healthy.

I spent all of January and February 2015 meeting with doctors. I decided to preserve my fertility and undergo a salpingo oophorectomy in early April 2015. The following week I had a prophylactic nipple sparing mastectomy.

While barely a month out from my surgeries, I have never felt better physically or about any decision I have ever made. I look forward to living a long healthy life and hopefully having my own family in the near future. Most importantly, I hope to educate and help other women with a family history of breast and ovarian cancer or a known BRCA mutation.

Not The Story You Would Expect

Excerpted from Deborah’s Presentation at Emerson College AEPhi’s Ribbon on the Runway Event, April 2015

My story is not what you might expect.  My trip through the land of breast cancer was so not traumatic that I still have a hard time actually thinking of myself as a breast cancer survivor.  And I hope it remains that way.  But I did have cancer and it is always there in the background of my life.

Almost exactly two years ago I was called to come back for additional testing after my annual mammogram.   The diagnosis came back as a stage 1 tumor for which treatment included a lumpectomy, radiation and then long-term medication. The prognosis was something like 98% chance of remission/cure.  None of this was fun.  It was emotionally and physically difficult for me and hard on my family.  The medication has side effects which are annoying, and sometimes difficult to deal with.   But the worst of it was over in 6 months.  I was never obviously sick.  Most of the people around me had no idea what was happening (and still don’t know).

The sheer prevalence of breast cancer in the Jewish community led me to support Sharsheret years ago.  When the time came, I knew about Sharsheret and all the many programs it has to help Jewish women with breast and ovarian cancer, and I called, even before I was officially diagnosed.

From that moment on, Sharsheret was a tremendous help to me.  As the caregiver in the family, I didn’t really feel like I could, or really wanted to, share my thoughts with them.  If I wasn’t needy, they wouldn’t worry.  If they weren’t worried, I didn’t have to comfort them.  Sharsheret’s social worker was on the other end of the phone, checking in with me just often enough so I could maintain “even-keeledness” to everyone else. She reassured me when I worried about my daughter’s reaction, sympathized when I described my physical state, supported me when I expressed frustration, listened when I needed to vent.   She sent a pillow after surgery, just at the moment I was thinking to myself I needed something like a nursing pillow to get comfortable.  But this was a fancy pillow in a fancy package, which made me feel so cared for.  Sharsheret set me up with a peer supporter who talked to me about her experiences and sent a package of informational brochures which covered the needs of everyone around me.   There was even one for parents which I gave to my Mom.

When you know someone dealing with breast cancer, and unfortunately chances are very high you will, send them to Sharsheret.  If you encounter oncology doctors or nurses or social workers, tell them about Sharsheret so they can recommend it to their patients.  If your family has a history of breast cancer, get in touch right away.  Sharsheret is there for them and for you.

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