Our Voices: A Blog by Links, Callers and Volunteers

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.

Celebrating With My Family This Mother’s Day

“In my room watching Netflix,
I did not expect what was coming.
When my mom walked in and said,

“Come here pumpkin, let’s talk.”
The hurt in her eyes was as loud as a tree falling.
She pulled me close and told me the news.
She said, “I have breast cancer.”

Tears overcrowded my eyes as fast as a flood
Thousands of scary thoughts clouded my head.
I was speechless.
In that moment, I felt numb.

My heart raced and my stomach dropped
like I was in a haunted house.
This time I was hurt by the cruelty of life.
She said, “Don’t worry. It will all be okay.”

This is the poem my daughter wrote about the day I told her I had cancer.  She is thirteen.  As a mother, her mother, when I read this poem I was stunned.  One of the things that felt so overwhelming about my diagnosis of cancer was having to tell my family, my children in particular.  How to communicate that while this is scary and will be a bumpy road, it is going to be all right in the end?  That I will fight it with every ounce of my body and every resource available to me?

That is where Sharsheret came in.  I have known about Sharsheret for ten years, as long as my sister-in-law, Shera Dubitsky, has worked there.  While we have talked about her work at Sharsheret over the years, I never thought I would need to reach out to her in a professional capacity.  When I first got the news that the doctors saw something in my MRI, my husband urged me to call Shera.  “Why?” I asked “This is going to be nothing.”  But I did need her and I did need Sharsheret.

Sharsheret provided me with support that I didn’t know I needed and resources that have helped me through the process.  I was given a peer to talk to about surgery options so that I could understand my choices from the perspective of a fellow patient.  The guide given to my husband about how to be a supportive spouse was very helpful for both of us.  Perhaps most importantly, Shera and I had many conversations about how to discuss this with all of my children, for my sons had questions, too. I love that Sharsheret recognizes that cancer affects everyone in the home, not just the person with the disease.

My mother had breast cancer in 1987.  She was single and living alone, and she faced her cancer and treatment very stoically with very little support.  She was tough, to be sure. I am her daughter, and I am tough, too.  It turns out that the experience can be less isolating and easier to bear with Sharsheret by one’s side. 

As Mother’s Day approaches, I am standing here, cancer free, to celebrate with my family.  The end of my daughter’s poem is true: It will all be okay.

From The Simple Son To The Wise Son

My name is Myrna Cohen and I am fifty two years old.  My husband and I have been happily married for twenty eight years and we have a thirteen year old son.  Though I have been celebrating Passover with my family for many years and reading about the four sons, I never really understood the experience of the “simple son” until I was diagnosed with stage 1-A, grade 3 ovarian cancer, at forty eight years of age.  I had a history of benign fibroid tumors, and I thought something wasn’t right because the twinges I had always had on my left ovary hurt more and came more frequently.  Thank goodness I listened to my body and had it checked out. I had a transvaginal ultrasound of my left ovary at my OB/GYN visit and it showed a mass that had not been there 5 months earlier.  If I had waited until my regularly scheduled appointment, I would not have been diagnosed at such an early stage.  I had two surgeries and needed six rounds of chemotherapy because my cancer was very aggressive.

I really felt the need to find others who have been on this teal journey I was about to embark on.  There were not many resources available relating to ovarian cancer and the ones that I did find were very difficult to read due to the advanced stage when most ovarian cancers are detected.  Already having the medical support I needed, something else seemed to be missing.  As I searched for spirituality, I realized that I was seeking a Jewish connection.  I felt like the “simple son” in the Passover Story - I had so many questions yet I didn’t know what to ask. 
I contacted a local ovarian cancer awareness organization and they gave me Sharsheret’s information.  A few days later, a friend also told me about Sharsheret.

I realized that if I felt like the “simple son”, I was sure other women did too.  Through Sharsheret I was able to find that there were other women out there like me and it  made me feel better knowing that I wasn’t alone.  Sharsheret has had a huge and positive impact on my life.  I am happy to report that since my diagnosis in June 2011, I was able to find the resources and answers I was looking for.  I now feel like the “wise son” and am empowered to share my wisdom with other women on this journey.   Because I am so fortunate that my cancer was found so early, I feel G-D wants me to help spread awareness of the signs and symptoms of ovarian cancer in hopes of having ovarian cancer diagnosed at earlier stages.  It is my hope that along with Sharsheret we can spread more teal education and awareness.

From Lost Caller to Peer Supporter

Looking back almost ten years, I think the first overpowering emotion I associate with my Stage 2 breast cancer diagnosis at age 25 is loneliness. It came before fear, denial, sadness, anger, and pain. No one could possibly understand what I was experiencing. Enter Sharsheret. The staff, peers, resources, gifts in the mail, and the intense realization that I was in no way close to alone in my journey.

I will never forget my first peer phone call. Within 60 seconds, I experienced something that had not happened since diagnosis – I laughed. A lot. I started to feel like maybe everything was going to be ok and maybe there were people who could understand this insanity.

I spent 16 months doing chemo and then the real healing began. This stage was even harder than the illness itself. I had to figure out my “new normal” and rejoin my previous life. With Sharsheret staff and a new peer supporter, I started to figure it all out and focus on my future.

I re-entered the dating world. Who was I now? How was I going to address the “cancer thing?” It was a rough road of disappointment and confusion, and a different kind of pain. There were tear-filled conversations and practical advice from Sharsheret. In time, I was dating someone very special. He knew the broad strokes of my “story,” but not the real details. With help from Sharsheret, I figured out a very specific plan of action. Eventually, as a couple, we worked through difficult conversations and moments. Doesn’t everyone spend their fourth date sitting with an oncologist discussing cancer and the future?

I had found an incredible partner. But, the more my life was moving forward, the more it became clear that my cancer survivorship had a huge impact on each step. As I was getting married, Sharsheret came through again. The consistent support and meaningful help truly came from my Sharsheret Ladies, as I started calling them. I am blessed with a one-of-a-kind family whose love knows no boundaries – but for what they could not understand, they would ask, “Have you called Sharsheret?”

Most recently, I called Sharsheret for the next thing that has come up. We are expecting our first child and I needed a totally new kind of support. It was a really fun call to make and I know that there was joyful screaming in the office as these women had become like family.

Having had breast cancer at 25 changed my entire world. I thought I could do it alone. I was so wrong. I needed help and I got it from my Sharsheret Ladies. I am now a peer supporter to others and a speaker to college students and other young leaders. This transition from lost caller to peer supporter and presenter was a huge deal. I was recently on the phone with someone in the office and panicked when I asked if I could still call in as a survivor. I was told of course Sharsheret would be there for me and my family for many healthy and happy years to come.

You are not alone

It was a dreary October afternoon when I checked into the emergency room. I had been experiencing some rather disturbing symptoms for quite a while, but like the typical Jewish mother, chose to focus on the health needs of my family. For all you Monday quarterback readers out there – I know the song. Should have, could have, would have – but this is not how this story goes.

Enter Sharsheret. Little did I know then, but Sharsheret holds your hands in their hearts regardless of who, what, when, and where you are. My first call connected me to Sharsheret’s Director of Navigation and Support Services. The welcoming warmth of her voice will remain etched in my memory. Her calm, professional manner enabled me to take a grip of the situation. She told me, “You are NOT alone.”

Sharsheret sent me a welcome package, a makeup kit, and, most important, a booklet called “Our Voices” that truly framed how I faced the disease. I was completely overtaken by the writer who made a party out of what should have been a dreadful chemo affair. Her positive upbeat attitude became my mantra and guidepost. Every chemo session was an excuse for a different type of fiesta. There was music and laughter among the tears. But again, the focus, as the blessed writer guided me, was centered on living LIFE.

At one point, Sharsheret gently steered me to pair up with a peer supporter. At first I thought there could not have been a greater mismatch. But it was exactly what I needed. This disease has a lot of personal ramifications not easy to share. As a long time survivor, my peer supporter remains an anchor of support across the miles – informative and supportive without being intrusive, my own custom-designed angel from heaven to help me weather this storm.

And what a storm this is. With the grace of G-d I am now disease free, and have great hope for the future. But let’s face it, a diagnosis of ovarian cancer is not a picnic in the park. Reaching out to Sharsheret has helped cushion the blow.

My New Normal

I feel as though I have a very special connection with Sharsheret. They had just become a budding non-profit when I was first diagnosed with breast cancer at the age of 33. It was 2002: I had just moved to Atlanta and had to start chemotherapy as soon as I arrived. You can imagine how thankful I was to find Sharsheret’s Peer Support program that hooked me up with a woman who had gone through the same thing. It truly was a blessing to have someone who could relate to everything I was going through call and check on me weekly.

Five years passed cancer-free and everything in my life was going great. My husband and I had adopted a baby from Guatemala. He was about to turn four when I got the news that changed everything. “Your cancer is back.” I literally fell to the floor crying in desperation.

This was not supposed to happen to me. I immediately called Sharsheret and started to have a weekly conversation with someone from their support staff. I joined the Embrace program and they got me to the place where I could accept my “new normal.”

Fast forward five more years and I am still able to watch my precious child turn ten years old due to the miracle of more treatment options in advanced breast cancer. It is funny how life works because when I got the call to be asked to write this piece I was going to call Sharsheret myself! I had just found out last week that the medication I was on for years had stopped working and I am going to have to change treatments again. Any time I need extra support, my go-to people are those at Sharsheret. It is an amazing organization where I receive love, guidance, and most important understanding about the toughest part of my life. They truly are a blessing that I could not have done without.

Three Was Always My Favorite Number

I was born on the 3rd of October. Every member of my family was born on a day that could be divided by 3.  I have 3 siblings, wanted 3 children and always loved the number 3. I loved it until I was told I was “triple negative”.

At age 37, while nursing my second baby, I discovered a lump in my breast. I wasn’t concerned. I figured it was a clogged milk duct. There was no history of breast cancer in my family. Even my PCP (Primary Care Physician), told me it was nothing more than a clogged duct and instructed me to stop nursing. Fortunately for me, my ObGyn was not as cavalier and recommended a mammogram. I was diagnosed with stage 3A breast cancer and underwent aggressive treatment because I was “triple negative”.  A triple negative breast cancer diagnosis means that the tumor is estrogen receptor-negative, progesterone receptor-negative, and HER2-negative. It is typically responsive to chemotherapy and generally does not respond to receptor targeted treatments.

At the time, I did not know anyone my age that had breast cancer.  I had 2 small children under the age of 3, and I lived 3,000 miles away from my siblings and parents. I was overwhelmed and frightened. My sister-in-law recommended I contact an organization called Sharsheret for information and support. I immediately felt connected and supported by others who understood. I was learning a new language and new appreciation for the number 3.

I had 27 lymph nodes removed and 4 were cancerous. I underwent surgery, chemotherapy, and radiation. I was blessed to have my community rally support around me, as well as my family and friends that flew in to be with me. Sharsheret armed me with resources, knowledge, and support. After surgery, I returned home to find a box of activities to distract my children, a pillow that was an invaluable part of my recovery, and kind words from my peer supporter to help me through my treatment.

My cancer diagnosis and treatment were several years ago.  I am now cancer free.  Sharsheret was only a few years old at the time. Sharsheret has grown exponentially and the chain has become stronger. It was an invaluable resource then and continues to provide so much for so many. I learned that 3 is just a number. But, what really matters is that I have 2 wonderful children, a loving husband, family, friends, and my health.

Happy Anniversary To Me - Here’s to my new ‘normal’!

People celebrate many different anniversaries, the most common ones being wedding anniversaries and in the Jewish community, the yartzeit, or anniversary of a person’s passing .  As a single woman in her early 50’s, I haven’t celebrated any of my own wedding anniversaries and unfortunately, I’ve marked too many of my parents’ yartzeits.  Now, I have an anniversary of my own to celebrate for one year ago today, I became CANCER FREE when my surgeon removed a tumor from my left breast, which though it was small, it was ‘angry.’  At that same time, I began living a new ‘normal’.

While this anniversary is mine and mine alone, I would not have made it through this first year without the help and support of my family, friends, and community.   From my brother who called me so regularly that I didn’t feel the 3,000 miles that lay between us.  My friend who joined me at my surgeon’s office the day the biopsy results came and was by my side every step of the way.  My family and friends who called, sent cards, gifts, and e-mails to be sure I knew that I was not alone, was being thought of, and encouraging me to keep up my spirits.  My co-workers who were supportive in many ways:  bringing my first student up from breakfast, taking up my slack on those days that I was subpar, and just being supportive.  To those in my community: my Rebbetzin who called on a regular basis to check in on me, and my friends and neighbors, who if I had allowed them to, would have done EVERYTHING for me.  Yes, this was MY journey, but I was NOT alone.

Following my surgery, I began writing e-mails to keep family and friends abreast of how I was doing, where I was as far as treatment was concerned, and some of the ‘adventures’ along the way.   I thought that I was doing this to make it easier for me, rather than making individual phone calls (which I often didn’t have the strength to do).  But what I got was support, kudos, and admiration for how I was handling everything with determination, strength and humor.  Hearing how I was inspiring people, how I was supporting THEM through this, gave me strength.   I felt each response was a link that was making me stronger.

There is much that I have learned this past year:  My life is forever changed, I have a new normal – I’m a survivor!!  I have an inner strength that is far stronger than proven during previous ‘life tests’. Laughter is great medicine.  A good cry can be good medicine, too.  It is okay to ask for help.  We are not meant to travel these journeys alone.

Links, connections, support, strength, help, community – all describe Sharsheret…and though I linked up with Sharsheret late in my journey, I am looking forward to becoming a strong link in their chain…not only to help me navigate my new normal, but, should the need arise (G-d forbid), to help someone much like myself navigate her way, hopefully with a lot of laughter and smiles.

My Survivorship Story

My Sharsheret Story is actually two stories that quickly entwined into one. I was diagnosed with stage two, invasive ductal carcinoma in February of this year. Although it was not a surprise, it was demoralizing. I had already been through a different cancer experience years earlier and although I knew I would, I often felt I could not “do it” again.

As I struggled, I naturally turned to the Jewish community which has been at the center of my entire life. I knew of Sharsheret. Years as a professional in the Jewish community had made me aware of its existence. I explored the website and ordered information. I made a call and spoke with a member of the support staff. I had a specific question, which she answered and then offered me additional support as needed.

I spent the next months recovering from several surgeries and then triumphantly ordered my Thriving Again survivorship kit. Again, I spoke with the support staff who called to follow up on my request. I thought the kit was enough, but as we spoke a bit more, we discovered there was something else they could help with.

Before my diagnosis I held two part-time jobs in a local synagogue. I took medical leave from one position and stepped down from the other. Now that I was through my treatment, I was looking for new employment and worried about disclosing my diagnosis to potential employers and managing follow-up care. Sharsheret supplied several wonderful resources and guidance about cancer and careers.

During my job search Sharsheret was looking for a Director of National Outreach and it almost felt bashert (destiny) to me. I had the professional skills and training and now I had the personal experience. I have always worked my passion. I heard another cancer survivor say “Make your mess your message.” Either way it felt like Sharsheret was the place I was meant to be. Thankfully, they felt the same way.

I did worry that immersing myself in the world of breast cancer might feel overwhelming. Sure, I anticipate difficult moments, but the word I would use to describe it now is not overwhelming, but empowering. I look forward to many year of empowerment!