Our Voices: A Blog by Links, Callers and Volunteers

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.

Switching Roles

When Rochelle Shoretz, Sharsheret’s Founder, passed away, social media was overflowing with articles about Rochelle, her life, her legacy and her organization, Sharsheret.  I was amazed by all that she did and accomplished, and by the amazing organization she created. Little did I know that Sharsheret would be the clutch I needed in the coming few weeks.  During all of this, one routine test led to more tests, leading to the diagnosis of breast cancer for my mom. My mom has been there for me day and night. Being a full time working mom of three, I had to teach myself as an adult that it was okay to ask your mom for help, and boy have I. But now things would have to change and she would have to take a step back and we would have to focus on her. It was now my job to stand by and be there for my mom in any way she needed or wanted.  No one ever wants to hear the word “cancer”, no matter how young or how old you are. But a big lesson that I have learned is everyone has their own way of facing cancer, and whichever way you choose is the right way.  I am the type of person that needs to read more, talk about things, and hear other people’s stories. So, I immediately reached out to Sharsheret. Sharsheret was there for me sending me educational materials, for support, and as a friend to “talk” to.  I wanted to know everything and be on top of things, and know what can be expected on the cancer road. Nothing about this road has been easy or predictable but I am looking ahead to the light at the end of the tunnel, and I cannot wait to touch that light and sing and dance the happy dance of goodbye to cancer.  Most of all I cannot wait to switch back roles and ask my mom for help.

Ask The Expert

Sheila Solomon, MS, CGC is a Certified Genetic Counselor focusing in clinical cancer genetics for the past 15 years. In addition to her work as Sharsheret’s Program Coordinator, she is employed by GeneDx, Inc., a subsidiary of BioReference Laboratories. Sheila is pleased to answer your questions and concerns about hereditary cancer genetics and your family history of cancer.

Question 1: I'm HER2 positive, BRCA negative; does this affect my family members?

Answer 1: HER2 is a protein found in some breast tumor cells and is not inherited in families. The presence of the HER2 protein can help your healthcare providers provide the most effective breast cancer treatments.

Question 2: When I was diagnosed with breast cancer in 2006, I had the multi-site 3 panel testing which came back negative. My oncologist has asked if I want to do the new testing that tests for 9 different genes linked to breast cancer risk in families. Is it worth doing? Could this new testing have an impact for my children or other breast cancer risks for me?

Answer 2: I’m glad to hear that your oncologist is educated about the new technology using multi-gene panels which allow us to test for multiple genes in a single test. It may be worth meeting with a genetic counselor to review any updates to your family history since 2006, which can clarify which additional testing would be helpful for you.

Question 3: I have Ashkenazi Jewish ancestry on both my mother's side and my father's side of the family. My father's mother died of breast cancer in her mid-60s and there is no ovarian cancer in any woman in the family. My mother’s family was murdered by the Nazis so I do not have health information about them. So I have been wondering, should I get tested for a genetic predisposition for breast and ovarian cancer?

Answer 3: People with Ashkenazi Jewish ancestry have a 1 in 40 chance of carrying a BRCA1 or BRCA2 mutation, which would increase breast cancer and ovarian cancer risks, among other cancers. Thank you for sharing the family history of breast cancer. It is interesting you note that it is on your father’s side of the family. Many people have thought that cancer on the father’s side of the family does not matter, when, in fact, it really does! Men can inherit and pass on BRCA1 and BRCA2 mutation just as equally as women can. So this is still important information. Generally speaking, the younger the diagnosis of breast cancer in the family, the more likely the cancer is hereditary/inherited. With the diagnosis in your grandmother’s mid-60s, it is difficult to say whether her cancer was caused by a BRCA1 or BRCA2 mutation, or if it occurred by chance. It would be worth discussing your personal and family history with a genetic counselor.

Question 4: I am BRCA 2 positive and had a double mastectomy and reconstruction, and the ovaries removed. I have 3 sons, oldest 31 and youngest 26, and I would like them to be tested. Where can they go?

Answer 4: I applaud you and your desire to arm your sons with the gift of medical knowledge! You certainly have taken many steps to reduce your own cancer risks with the genetic information you received and I imagine you would like your sons to know it, too. One of the best ways to begin the conversation is to share your results with them. Talk with them about a meeting called genetic counseling. Genetic counselors are trained healthcare providers who will discuss options with your sons and help to coordinate their testing, should they choose to proceed with the testing. Genetic counselors are located all over the country and world. You can find a local genetic counselor by visiting www.nsgc.org. If you or your sons have specific questions before they meet with the genetic counselor, Sharsheret is glad to be a resource to you and your family. Sharsheret offers Family Genetics Conference Calls, which offers a guided conversation between you and your family members, facilitated by Sharsheret’s genetic counselor to discuss your family’s BRCA genetics risk. You can schedule a call by contacting Sharsheret at 866.474.2774.

Question 5: I’m a 41 year old mom and wife to an amazing husband. I was diagnosed with breast cancer in April. As part of my diagnosis and treatment, I met with a genetic counselor and had genetic testing. I came back with positive for CHEK2. The original treatment plan had been to do 6 weeks of radiation. However, doing some research on my own, I’m pretty nervous about doing radiation, due to this gene. I’m curious if you have an opinion? Luckily, we saw the radiology oncologist this week and she agreed, and she intends to do more research before we proceed, too.

Answer 5: Thank you for sharing your story with me. I am so glad you have spoken with your genetic counselor and are arming yourself with as much knowledge as you can before making decisions. I cannot speak to your specific case and whether or not radiation is the right treatment, as each case is different and is based on number of factors. I recommend you explore this further with your doctor and treatment team. It sounds like your oncologist would be open to this conversation since she intends to do more research, too!

To speak with a member of our support team and get connected with Sharsheret’s genetics program, click here.

The Tears I Shed

When I was diagnosed about two and a half years ago, it came as a total shock. I had exercised avidly, was not overweight, had no history of breast cancer in the family, and didn’t smoke or drink. All the answers to the myriad of questions by health care professionals were all no, no, no and no. I saw my OB/GYN annually and had regular mammograms. So how was it possible for me to discover that I had stage 3 triple negative breast cancer? There was no time for denial or self-pity as it was necessary to make decisions about doctors, surgery, reconstruction, and treatment plans as soon as possible. I was told not to let my illness define me, but that is exactly what happened. I thought it was written all over my face as I walked around doing errands, chatting with neighbors and just going about my business. I am not a person given to tears but suddenly I found myself crying incessantly. When my friend whom I’ve known for over 30 years came to visit, she commented on how she’d never seen me cry. But there I was falling apart in front of her. When I ran into an acquaintance, someone I was not particularly close with, I suddenly found myself crying in her arms, right there in the checkout line of the neighborhood grocery. It was all quite embarrassing. When I first called Sharsheret I had to hang up because I couldn’t speak. They understood and told me to try again anytime. Apparently, tears were not unusual to the wonderful staff there. They were more than happy to put up with my choked up speech, and put me in touch with a peer supporter who also told me not to be embarrassed. I considered myself fortunate that my five daughters were all grown and did not require me to put up a strong front, and it was easy for me to take time off working in my husband’s office. But what did other women do who had to attend to small children, or who had jobs they could not neglect? Those women may not be braver than I am, but it is necessary for them to put on a brave front, and they have my sincerest admiration. Now that I am two years out, I am practically normal, thank G­d, both in my health and control of my emotions. When Rochelle Shoretz, a”h, Sharsheret’s Founder, passed away I once again called Sharsheret in tears. The Sharsheret staff once again told me that it was quite normal for me to react the way I was. Sharsheret has been there for me, never asking for anything in return. It is my pleasure to now contribute to their blog and share my experience. There are no more tears, but if I do have a moment of weakness I will not be embarrassed.

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