Our Voices: A Blog by Links, Callers and Volunteers

Recent College Graduate to Cancer Patient

I was just like you. I sat in the very same chairs you are sitting in right now. I listened to speakers talk about their experiences with breast cancer and ovarian cancer and how Sharsheret helped them to overcome their most difficult battles. I chose a major, minors, and took classes that seemed most interesting to me. I was involved in Jewish life on campus to help myself grow as a person and as a leader. I was in a sorority and a sisterhood that always supported each other. I was just like you, and then one day I wasn’t anymore.

On June 11th, 2015, I went in for a CAT scan for some stomach issues I had been having. I was expecting to hear that I had mild stomach issues that could be treated with medication and change of diet. That night I received the call.

“We found a 17 centimeter tumor in your right ovary. We don’t know anything about it other than it is there and you need to make an appointment with your gynecologist right away.”

I called my mother frantically and crying hysterically telling her about the call I just received. She raced home. We called a number of doctors. There were many questions and few answers. It all of a sudden became real. Just like that, I went from a recent college graduate to a patient.

Many people name-dropped Sharsheret to me. I decided that I would consider giving them a call if, and in this case when, I did find out that my tumor was cancerous. I was very concerned that because of my young age and rare diagnosis Sharsheret would not be of assistance. Boy, was I wrong.

The first time I spoke to a member of the support team, I was told they would do everything they could to support my social-emotional needs, at whatever time or place I was. Sharsheret would also find someone who had the same or similar diagnosis at the same age for me to speak with, a peer supporter as they call them. I told them that it would be nearly impossible to do such a thing because my diagnosis was so rare, one in more than a million. I got a call back within the next few days that Sharsheret had in fact found a peer supporter for me. My peer supporter was everything that I hoped I could become. She had been diagnosed in the fall following her college graduation. After a year of surgery and treatment she was able to get back on her feet. Today, she is 34 years old and a successful corporate lawyer in Manhattan. For me, her story was the light at the end of the tunnel. My peer supporter was the first person I contacted when I got my final diagnosis. She was the person I spoke to about what it would be like to lose my hair. And she was the person who gave me the support I needed to get through to the next day.

Not only did I have my peer supporter as a part of my support system but I also had my contact from the support team. In the beginning of my journey I called Sharsheret often with questions and concerns. Looking back, I called during my most difficult moments, including when I was losing my hair, and in my happiest moments, like when I was done with treatment. About two months into my treatment a good friend of mine told me that she was planning to coordinate a bi-coastal walk initiative, one to be held for my family and friends in LA, and the other for family and friends in New York. Choosing Sharsheret as the beneficiary of our fundraising efforts was easy for us. Sharsheret had been there and continued to be there in the best and the worst of times for me. When my friend told me the walk in New York would be in November, I dreamt of the idea of attending. All I needed was permission from my oncologist. I told my Sharsheret counselor that I had thought of coming to the walk in New York with the permission I needed. The first thing she said was that if I was allowed to go she would be there, too. Now, that is support. I was lucky to be given permission to go and spend time with friends and family in New York, and attend the walk. There were over 200 people walking and running with us.

Sharsheret has been there for me in the best of times and worst of times and has truly made this experience so much easier for my family and me. From the peer supporter Sharsheret put me in touch with to my many conversations with the support team; Sharsheret has been there through it all. I finished treatment at the end of September and have since been considered in remission. Thanks to Sharsheret I know that I have them to fall back on for whatever I may need no matter how grim the circumstance. Sharsheret taught me to see the light at the end of the tunnel.

To view the full presentation, click here.

Recalculating

As we approach the Passover holiday, we recall the journey that the Israelites took when they left Egypt, a journey that took them from a place of familiar (albeit enslaved) circumstances to a wilderness of unfamiliar twists, turns, and obstacles.  Their guidance system?  A Cloud, a symbol of God’s presence, which guided the Children of Israel through the desert.  As they traveled on this difficult journey, they quickly learned that there were to be many unexpected detours, obstacles, and challenges to be faced.  When they mistrusted the process of the journey, the results were certainly not great – especially when their resistance led to the building of the golden calf.   Difficult and variable journeys can be hard to navigate, especially when they present undesirable turns or unanticipated delays, but trust in the process can be so effective in managing the challenges.

Michelle Stravitz, a Sharsheret Peer Support Network participant, shares her cancer experience, mirroring this theme of unexpected journeys when facing a cancer diagnosis. Her message is timely as we are about to sit at our Passover Seders and contemplate past and future life journeys.


I don’t really like the GPS in my new car.  With my old GPS, I could press just one key and the route would be listed clearly and concisely, step by step; and as a result, I would know the full route just when I began driving.  I knew not only the next step and when to anticipate it, but the entire route, all the steps I was to encounter, when, and for how long.  With my new GPS, I get a clear, colorful map of the road I’m on and the next turn to make, but not a route list.  I miss my route list!

I’m a planner.  I always plan my week’s work carefully, our vacations down to the day, my children’s b’nai mitzvah weekends well in advance.  I plan ahead for family dinner menus, schedules, even my own exercise regimen.

When I was first diagnosed with breast cancer, thankfully the doctors laid out a clear 9-month treatment plan.  First, I would have 5 months of chemo, followed by surgery and 6 weeks of radiation, with a little time to heal in between and after each phase of treatment.  Despite the shock, the fear, the overwhelming amount of new information that I had to absorb and the new reality to which I had to adjust, the step by step plan that was laid out in front of me was comforting.  I had a plan to cling to.  A way through this nightmare.  A road map. 

But when the plan changed along the way; or a sudden detour, unexpected bump, sharp turn in the road, or change in direction came up and the doctors weren’t sure what to do with the information, now that was really tough.   Whether it was a new pathology report, a second opinion, an unexpected complication from surgery, the announcement of a new clinical trial or the results of a new study, suddenly my GPS was RECALCULATING.  And recalculating. And recalculating.  The hardest part was the recalculating phase- waiting for answers, for clear directions from my medical professionals, for test results to come back, for decisions to be made.  It was so hard not knowing what was coming next, what was expected of me and what my newest reality was going to be.  It was, at best, unnerving; and at worst, terrifying.

While the GPS was recalculating, my mind would work overtime on the possibilities: Would there be more chemo?  Would I need some new medication?  Was this side effect permanent?  How would I adjust?  What was my next step?  What would that look like for me, for my family, for my future?

Sometimes, despite the difficulty of what is to come, it is comforting to have a plan.  When that plan suddenly changes – or worse - it needs to change but isn’t set yet, a patient can feel unnerved, unsettled, and uncertain.  Truly, there was enough uncertainty with the diagnosis of breast cancer, with the fear of recurrence, with unknown long-term side effects of treatment, I didn’t need any more uncertainty or fear in my life.

But recalculating is often part of the breast cancer experience.  It’s simply part of life.  Not everything goes according to plan- or I wouldn’t have gotten breast cancer in the first place!  Like everything else on this rollercoaster ride, it’s how we cope with the changes, the new information and the period of recalculating, that really matters.  For me, I had to learn to suspend the need for that GPS route list.  I had to stay in the moment, to focus on one day at a time, to use mindfulness and to think only about the step at hand, the street I was currently on, and maybe, just maybe, the one immediately after that.  And, while terrifying and unnerving at times, it was also somewhat liberating.  I would ask myself, “Am I okay at this moment?”, “Are my kids okay at this moment?”, “Am I surviving at this moment?”  And if the answer was yes, then I was okay.  At this moment.  For this step.  For this one turn.

Eventually, the GPS would figure out the new route, and tell me my next move.  ONE. STEP. AT. A.TIME.

Michelle Stravitz is an event planner with Atelier Events, LLC, a PCI-Certified Parent Coach, and the mother of four children, ages 14-22.  Michelle connected with Sharsheret in the summer of 2015, shortly after being diagnosed with Triple Negative Breast Cancer, Stage 2, and looks forward to being a peer supporter for other women like herself.  She has appreciated Sharsheret’s incredible support, most especially her Sharsheret counselor’s wealth of metaphors to help her see her way through different phases of treatment (and worry!) and most recently the incredibly insightful webinar on the Emotional Rollercoaster of Survivorship.

Think Pink at Congregation Kehilath Jeshurun

Marsha Dane Stern was an Aishet Chayil who passed away at the age of thirty-six from breast cancer.  Her life of devotion to Jewish education, love of Israel, chesed and family continues to serve as an inspiration.  In recognition of the completion of her thirty-sixth yahrzeit, her sisters, Gail Propp, Sharon Dane and Wilma Kule and her children, Douglas Stern and Deborah Stern Zimbler, partnered with the KJ Sisterhood and brought THINK PINK to KJ in order to raise awareness about the importance of cancer screening and knowing one's family medical history.

The event commenced with a challah bake, bringing together over 100 women who were coached by ‘The Challah Girls’ in the spiritual art of challah baking.  There was excitement and camaraderie in the room as everyone got down to the business of preparing the challah dough.

While the challah was rising, Dr. Karin Charnoff-Katz, a breast radiologist, addressed the women with a presentation titled, "Cost Benefit Analysis: An Argument for Sharsheret and Screening Mammogram."  Geneticist and founder of MyJewishGeneticHealth.com, Dr. Nicole Schreiber Agus, then presented, "Beyond Recipes and Traditions: What You Need to Know About Transmission in the Jewish Community as it Relates to Cancer Risk."  We learned that one in forty Ashkenazi Jews carry the BRCA gene mutation, which is nearly ten times the rate of the general population, making Jewish families more susceptible to hereditary breast, ovarian, and prostate cancer. The importance of screening was stressed by both speakers.

Following the informative presentations, we learned about the mitzvah of making challah and then began the braiding process.  The women channeled the sculptors within, fashioning beautiful challot.  At the end of the evening, everyone went home with numerous challot ready to be baked and enjoyed on Shabbat.

Pink doilies and kippot aplenty were in view Shabbat morning as Pink Shabbat continued, featuring Dr. Naamit Kushan Gerber, a radiation oncologist.  Dr. Kushan Gerber addressed the congregation during services about the role of data in making personal medical decisions, particularly as they relate to genetic testing, breast and prostate cancer screening, and treatment options.   Her speech, entitled, "The Half-Shekel: Knowing and Counting”, also raised awareness of the existing guidelines for screening.

Services were followed by a beautiful hot kiddush, complete with delicious pink ribbon cookies and a wonderful assortment of gluten free cakes generously donated by our neighborhood bakery, By The Way.  Helene Godin, proprietor of By The Way, lost her beloved mother-in-law to breast cancer and therefore found it to be especially meaningful to be a part of Pink Shabbat.

Think Pink provided a valuable service, underscoring the role that the KJ Sisterhood plays in the KJ community.  If either program encouraged just one person to undergo cancer screening or genetic counseling, then the life of Marsha Dane Stern continues to inspire.

From “Why Me?” to “What Now?” – Lessons from the Book of Esther

On Purim, we read the Book of Esther. The Cliffs Note version of the story is that the evil Haman convinced King Achashverosh to deliver a decree to annihilate all the Jews in his empire. Each Jew could have understandably asked “why me?” and become despondent and despairing. Yet, the Jewish people remained steadfast, hopeful, and supported Esther as she strategized and developed a course of action.  With some trepidation, ambivalence, and fear of the unknown consequences of her decisions, Esther set a course that saved the Jewish people and resulted in Jews thriving and surviving this very scary state of affairs. Together with her Uncle Mordechai, Esther transitioned the question from “why me?” to “what now?,” freeing her to develop a strategy that was lifesaving.

This theme is similar to what we are hearing from Sharsheret callers facing a cancer diagnosis. In all the years since Sharsheret’s inception, we rarely hear a woman pose the question “why me?.”  More often, women are researching, strategizing, putting together a support network, and frequently adjusting to the “what now?.”  Decision making can feel overwhelming, brewing with ambivalence, self-doubt, second guessing, and underscoring the fear of the unknown.  As we learn from Esther, it’s important to have people who share the journey and can help you think out loud about next steps. It’s critical that your decisions are grounded in reliable information and guidance from experts, while at the same time, recognizing that all decisions rely on a leap of faith, as no one has a crystal ball and can predict the future.

Most importantly, we learn that it is important to always have hope, particularly when facing an unknown future.  Hope is fluid and ever-changing depending on what you are currently experiencing.  Look for moments of hope, for this is where you will find your strength. Esther modeled for us that one can find hope in the unlikeliest of places.

Not The Average Mom, But A Survivor

My regular doctor’s checkup at my pediatrician had never been easy for the three of us. My mom held my hand as I, a 19-year-old girl, kicked and screamed as the doctor, whilst holding me down, pricked me with a needle. Once she’d finish, we all calmed down—relief spread across the doctors face, I sat upright, proud to have endured the pain of a PPD shot, and my mom said, “See, that wasn’t so bad?”

So when it came time for my yearly check-up last summer and my mom broke the news that I’d be visiting a new doctor, I was sort of excited. And then she told me where I was going—to the gynecologist—and I cringed. I was a 20 year old girl with a family history of breast cancer, she said, there was no harm in being extra cautious. But my mom didn’t realize that was the last place I wanted to be.

As I sat in my new doctor’s office, that resembled more a family living room than the white, sterilized offices I was accustomed to, I was a little excited to have graduated the awkwardness of going to a pediatrician as a full-grown young adult. I registered my name with the secretary and hesitantly took the clipboard with piles of paperwork I was expected to complete. Out of habit, I motioned to my mom to take the clipboard and fill out the papers. “I think you can handle it,” she said to me. So I sat down and flipped through the pages, filling out my name, date of birth and current address. Then I turned to the page where it read at the top, “Family History” and underneath it a check box for “Cancer” with a space left blank to specify “Type.”

In that moment, my body froze. I was suddenly transported back to the fifth grade. Visions popped into my mind of my mom’s bald head, her skinny face tucked under layers upon layers of blankets and the palpable devastation my family felt throughout the early months of her diagnosis. Though my mom is in remission today, thank god, and it has been ten years since her diagnosis, the moment I put a check in the box marked “cancer” I felt like I was branding myself with the word and everything it carried—as someone who had to be watched, someone who had to be “extra cautious.” In that moment, I felt weak, like I had no control over my body or of my future. In that moment, I didn’t want to have to worry about the outcome of my appointment. I felt bad for myself. Most of all, I felt bad for my mom.

I looked at her sitting next to me, with her long black hair framing her full and lively face. When my mom was sick, I was in fifth grade. As her oldest daughter, I felt a responsibility to take care of my mom. Though I couldn’t exactly heal her, after all I wasn’t a doctor, I decided to put my time into the little things—waking my siblings up for school (though they complained I was too rough), making up dances with my sister (though she said I was too controlling) and constantly reassuring my brother that everything was going to be okay (though he doesn’t like to admit it). Though my mom is well today I still feel a responsibility to watch over and care for her—to make sure that she is happy, healthy and, most importantly, taking care of herself. I must remind myself all the time that my mom is not the “average” mom, but she is a “survivor,” with the battle scars to show off her fight.

When I think of what my mom had to go through at the young age of 34, I get the goosebumps. The fact that I was too young to even understand the pain that my mom endured makes my head pound. The only sense of condolence I receive is that other women can seek my mom’s advice, support and companionship as they battle breast cancer. And to take this a step further, it is through organizations like Sharsheret that specifically link those battling breast cancer to women like my mom, helping others find a guidance within the Sharsheret community.

As I heard the doctor call my name to enter the exam room—a place that I was sure I’d visit again for years to come—I looked at my mom. “Ready?” She said. And then it hit me.

My mom was not only a role model for women battling breast cancer, but also for others like me—children of those who are diagnosed. She had indirectly been showing me all along that it was not embarrassing to take precaution and the only way to take care of myself and to be healthy was to ask my doctor questions and to attend my annual appointments. It had taken until my first gynecologist appointment to realize that my mom, and others like her, can strengthen and support both women and teenagers alike to take care of themselves.

“Ready,” I said as I stood up from my chair and took her hand, and together, as “survivor” and daughter, we entered the exam room.

Running For Rochelle

I am truly honored to be part of Team Sharsheret for the second year.  Last year when I ran in the NYC half marathon, I received an email the Friday before the race from Rochelle Shoretz wishing me good luck.  In the email she wrote how she wished she could be running with me but unfortunately she wasn't feeling up to running.  I promised her I would run the race with her in mind.  Ruchi was on my mind the entire race and thoughts of her inspired me throughout New York City.  It was truly one of the most incredible experiences I have ever had.  I promised myself that for as long as I could, I would be part of Team Sharsheret.

This year more than ever, I am running this race for Rochelle Shoretz z"l.  Rochelle, even though you are not here to send me an email, you will be inspiring me more than ever with your incredible spirit and drive.  You were an exceptional person and I was honored to know you.  You were and will always be the heart and soul of Sharsheret.

I'm honored to be part of Team Sharsheret and I couldn't think of any better team to be part of!

Wearing Sharsheret’s Badge

Why do I run for team Sharsheret? Six years ago, two of my dear friends were diagnosed with breast cancer- that was my first introduction to the world of breast cancer and its impact on the lives of others. That experience paved the way for my connection to Sharsheret.  I decided to engage my kids’ school (Solomon Schechter Day School) and raise money for Sharsheret by running the NYC marathon. Wow! What an experience- the love and support from Schechter and the support from Sharsheret- it all collided into one magnificent run! It was so much fun.  When an opportunity came around again to run for Sharsheret- it was just an obvious- YES, I'll do this!

I am truly so grateful to have Sharsheret - an organization that reaches out to my community, that gives support, education, information and brings people together!

Thank you Sharsheret! I'm so honored to be wearing your badge!

The Good, The Bad, and The Ugly

This morning I took the step of moving forward with my efforts as a Sharsheret volunteer.  I was awed at the sheer range of services Sharsheret offers to women affected by breast cancer.  I called with the intent to help others; yet I left with not just that opportunity, but also a survivorship toolkit for myself.  I am personally humbled by the support that Sharsheret is able to coordinate and deliver, while respecting the very different and difficult choices we each must make in acting on our diagnosis.

During our discussion, I was asked to share my journey, and many memories surfaced (just like that old Clint Eastwood classic – “The Good, The Bad, and The Ugly”).  But what stood out, among the “nuggets” I recalled, interestingly, was this one very specific memory. 

Disturbingly undignified.  Ridiculously funny.  No, my friend, I am NOT referring to the latest Saturday Night Live skit.  Instead, I am recalling one of my many post-mastectomy /reconstruction visits with my plastic surgeon.  

The Characters:

  • Me: In the exam room.  Half naked, as usual.
  • My Reconstruction Surgeon: an award winning plastics guy, an artist really.  We will call him “Dr. Gorgeous”.  Hair gel aside, there is truly a special place in heaven for this man and the work he does to make women whole after breast cancer. 
  • Jeff:  My husband, my everything, the guy I lean on, nag, and love endlessly.

The Conflict:

I stand in the center of the exam room with my arms and hands out straight, while Dr. “Gorgeous” pulls, prods, and admires his artistry (could this get more awkward?).  He is very considerate and gentle, reassuring even.  As he reviews his handiwork, I stand under the glare of the fluorescent lights baring and reflecting my scarred and repaired orbs-above-post-baby-paunch to the mirror.

Good news is then shared all around, as the exam is FINALLY over.  My orbs are “orbing”; my incisions are healing.  All is well.  Thank G-d.  But I am still not allowed to move.  I am not allowed to overstretch my arms for fear I will pop my stitches.  Jeff is called over to put my bra on for me.  And he gets my arms through successfully.  Congratulations, honey!  But at first attempt he failed to slide the bra cups fully under my healing new boob-mounds. All this while Dr. G. watches and tries not to interrupt.

I am cold.  I am still somewhat half-naked.  I am surrounded by the two most important men in my life right now and I am annoyed.  Seriously. 

Feeling for Jeff, Dr. G. steps in.  “I hear you, Jeff, we have spent half our lives hoping to get these things off of our women, who ever learns how to put them on?”. 

Wink-wink.  Nudge-nudge.  Jeff’s ego is restored. 

Between the two of them my bra is re-clipped and I am helped into my shirt.  We are now ALL laughing.  Because this is just SILLY. 

One $50 Bra.  Enough to take down one incapacitated woman, and two educated men with advanced degrees.  Sigh.

  • Bra – 1 
  • Jeff – 1
  • Breast Cancer – 0

I'll take it.

A Step In The Right Direction

“I bet they find a cure tomorrow!” my mother said, then shook her head as her eyes filled with tears.

It was midnight on April 2, 2009. I’d raced over to my parents’ home after getting the call I’d dreaded: My wonderful sister Emily, 37, had passed away after an 8-year battle with breast cancer.

I felt like I could collapse in grief. Yet I had to stay strong: Weeks earlier, a routine mammogram had revealed that I, too, had breast cancer. Despite years of helping Emily, there was nothing that could have prepared me for the shock, the questions, the fears. Should I use the same doctors? What treatments would I need? Would I ever feel okay again? Even as I mourned, I wrestled with these terrible uncertainties.

I wish I’d understood how much Sharsheret could have helped me. I could have gotten support to navigate the healthcare system, found counselors to help me deal with my grief and anxiety, and been matched with peers who’d been in my shoes, and had wisdom and encouragement to share.

I muddled through that terrible time, and am thankful to be healthy again. But I can only imagine how much more bearable it would have been with Sharsheret in my corner.

It was my best friend, Dana Adler, who first got involved with Sharsheret. For years now, she’s run marathons on the group’s behalf, many of them in my and Emily’s name. This year, she’s touched me even more deeply by asking me to co-chair Sharsheret’s Annual Benefit Luncheon, where she will be honored for her outstanding efforts.

While Dana has run many miles for Sharsheret, this will be my first step in supporting this terrific group. I’m incredibly excited! There’s lots of planning to do, envelopes to address, and logistics to work out. I’ll be chronicling these preparations in future blog posts for you. I’ve never co-chaired anything before, so if you come to the luncheon (and we really, really hope you will!), I’ll be the one looking clueless. Still, who could say no to a chance like this? This may be a Sharsheret benefit, but it’s really for the benefit of the many people Sharsheret helps every day. They deserve everything we can give.

It’s been nearly seven years since that night in my parents’ living room. And no, there’s still no cure for breast and ovarian cancers. But there’s help, and hope. There’s Sharsheret.

Staying Strong

December 11, 2015 marked 6 years since I was diagnosed with Stage 2b Triple Negative breast cancer.  I am dancing with NED (No Evidence of Disease) and hope that I continue to do so for a very long time!

I had 7 surgeries and months of chemo.  I experienced some unusually severe side effects from treatment that resulted in hospitalizations and long-term implications, but in spite of everything, from the day I was diagnosed, I was positive and strong. My mom always taught us to be strong and I was determined to win this battle. I am so very proud of myself that I was able to do it, staying strong and positive always, and never ever giving up hope. Just like my Mom taught me. No matter what, I was determined to win this battle.  I stayed at Hope Lodge which is a wonderful, wonderful place, and I met so many wonderful new "friends for life".

I first heard about Sharsheret when I left Hope Lodge after finishing all my treatment and surgeries. I received a wonderful survivorship package which was amazing, and which I continue to use.  I only wish I had known about Sharsheret when I was first diagnosed.  I wanted to give back so I asked about becoming a Peer Supporter and became one. I enjoy it so very much, because I know how I felt and being my own caregiver, it was especially difficult, and how important it was and is to have someone to talk to who knew exactly what I was going through.  I am so very proud to be a Peer Supporter for Sharsheret. I want to do whatever I can to help other people so they always know that they are not alone.