Breast Cancer

True Endurance

On November 2nd, 2014 I will be competing in the New York City Marathon. But this blog is not about me; it is much bigger.

Since taking on the challenge to race in the New York City Marathon for Team Sharsheret, I have received the utmost support from all over. Of course, my family and close friends have done an amazing job to encourage me. Be that as it may, I have been most humbled when less familiar hands have reached out: previous bosses, a former landlord who is now halfway around the world, and perfect strangers at my local dog park - who knows, maybe even you will after reading this!

This type of experience has illustrated just how widespread the effects of breast cancer and ovarian cancer is in my life. Many people along the way have told me that I am an inspiration to them; however, for me, it is quite the inverse.

In one such instance, the mother of one of my best friends reached out to me after she watched a marathon update video I had posted earlier that day. What she had to say blew my mind. “I had cancer and I had a choice on how I was going to deal with this disease. I did what I had to do…. You don’t have to do this in order to survive and that is what makes you so amazing!”

Wow! She reminds me what true endurance is. Whenever I think about walking a mile in the shoes of someone like her, 26.2 miles doesn’t seem so tough.

Please comment and let me know what you would like me to write about next entry! If you are feeling inspired, you can also visit my donation page here: http://sharsheret.donorpages.com/NYCTCSMarathon2014/DylanMax/

May We All Go From Strength to Strength

When my youngest daughter was four months old, I was diagnosed with stage two breast cancer. With my newborn, I would go to chemo treatments followed by daily radiation. After radiation we would go to Gymboree because life needed to remain normal. It was a new normal, but just the same, it was my normal. I would then go and pick up my other three children from school and continue on with the day.

After surgery, chemo, and radiation, there was no evidence of cancer. The doctors thought we were home free. But as anyone with cancer knows, it can sometimes be a very tricky disease. After three and a half years of remission, we found that the cancer had returned. The cancer had spread to my liver and bones. I now had stage four metastatic cancer. The diagnosis and prognosis was confirmed with two doctors. That was eight years ago. There has been no evidence of disease for 2 years and 4 months! Yes, I have metastatic breast cancer but I am living with it. I have a wonderful full life with my husband and four kids. Three are now in college and the youngest is in 7th grade.

I have had 11 types of treatment and achieved success with some and failure with others. One thing I do know is that research is key to giving us all a fighting chance. The more treatments we have in our arsenal, the more chance for one to work.  I also am not going to take my treatment lightly. I have blood work every 3 weeks and scans are done every three months. I fit cancer into my life. It works around my busy schedule. It is in the background of my mind but living is in the forefront of it. I believe in carpe diem every day. We were given this incredible blessing of life and I plan on living it for a very long time!

The Sephardi Question

We know that 1 in 40 Ashkenazi Jews carry a BRCA gene mutation that increases the risk of developing breast cancer by approximately 80% and ovarian cancer by approximately 40%. However, approximately 25% of the world Jewish population is not Ashkenazi, and begs the question: What does this statistic mean for the Sephardi population?

Recent studies on the subject seem to indicate that it means more than the scientific community originally thought. In the past decade, stories of young Hispanic women developing the kind of aggressive breast cancer associated with a BRCA gene mutation commonly found in Ashkenazi women popped up around the Southwestern United States. It turned out that these women were actually descendants of Sephardi Jews (defined in this instance as Jews with Spanish and Portuguese ancestry, but the term is often used more broadly to include Jews of Middle Eastern decent as well), who were exiled to the United States and Mexico during the Spanish Inquisition. This story led genetic counselors around the country and in Israel to begin seeking answers to the question: Are Sephardi Jews also at high risk of developing BRCA gene mutations?

There isn’t a concrete answer to this question yet.  There is a limited pool of Sephardi women sampled in scientific studies on BRCA gene mutations. However, a study on the genetics of different Jewish geographic groups conducted by Dr. Harry Ostrer, a professor of genetics at the Albert Einstein College of Medicine, has demonstrated that all Jews are likely genetically related.  Additionally, studies conducted in Israel have revealed two unique mutations in the BRCA genes that are found only in Sephardim, one of which was found in women who immigrated to Israel from Iraq, Yemen, Iran and Afghanistan, and the other was found in a study conducted by Dr. Michael Sagi on ‘pure’ Sephardi Jewish women from Spain and Portugal. Out of the 177 total women sampled in Dr. Sagi’s study, approximately 1 out of every 30 was found to have a mutation in the BRCA gene.

This emerging research suggests that Sephardi women may be at high risk of developing hereditary breast cancer and ovarian cancer, but more comprehensive research is needed. We will continue to follow this research and keep the Sharsheret community informed of any new developments. If you have questions regarding your personal family history or risk of hereditary cancer, click here to contact our genetic counselor Danielle Singer.

Honoring Our Survivors On National Cancer Survivors Day

National Cancer Survivors Day is on Sunday! Survivors in Sharsheret’s National Peer Support Network have shared when they considered themselves survivors.  Read their inspiring words below and join us in honoring all of the incredible women of Sharsheret. We would love to hear from you – tell us when you considered yourself a survivor in the comments section below.  Click here to join our new survivorship program, Thriving Again, and order your free survivorship kit today!

“I can't pinpoint the exact time frame. But I do remember a shift in my outlook - rather than being one of the 70-80% who would experience recurrence within five years, why couldn't I be in the 20-30% who would not? After all, some of us had to be and I needed to be. It is now 3 years and 9 months post- treatment and I am optimistic about my future.” – Leslie, diagnosed with stage 3 ovarian cancer
 
“The day I found the lump.  I knew it was going to be cancer, but I also knew that I was going to fight and survive!” – Linda, diagnosed with stage 2 breast cancer

“I’m never going to be rid of cancer, but around 2 years after my diagnosis I started to feel like a survivor. I’ve always felt like a warrior.” - Diana, diagnosed with advanced breast cancer
 
“The doctor said, ‘You have ovarian cancer’. Then looking at my daughter’s distraught face he added, ‘We’re going to take care of her’.  That was the first time I considered myself a survivor. I felt a sense of relief that I could get on with it – life that is. Many sweet moments since have reinforced that feeling - getting married between chemo three and chemo four, dancing at my children’s weddings, the births of my delicious grandsons, and reading and listening to stories of hope from my ovarian cancer sisters.”
 - Sharon, diagnosed with advanced ovarian cancer

Keeping Company With Anxiety

The holiday of Shavuot celebrates the giving of the Torah to the Jewish people at Mount Sinai.  It is recorded that the people heard thunder and lightning, and clouds and smoke filled the air.  The experience was overbearing to the senses.  The children of Israel shook with fear.  Ever have one of those days?

I imagine that those of you who have heard the words “You are BRCA positive,” or “You have cancer,” or “The cancer has come back,” experienced an overwhelming burden to your senses.  Perhaps you, too, shook with fear.  The ensuing thoughts that recur after hearing these words can be more agonizing than the realities.  We are often overachievers when it comes to imagining worse case scenarios. 

While we can’t stop intrusive thoughts from entering our lives, we can respond to the thoughts in a way that feels calming and empowering.  When an intrusive thought comes my way, I imagine myself putting my arm around it, similar to the way that I would put my arm around someone’s shoulder, and I “say” to the thought: “I knew you were coming.  I was expecting you.  You can hang out, but I have things to do.”  I find the more I welcome the thought, the less it overcomes me.

One woman in Sharsheret’s Embrace group for women living with advanced breast cancer shared, “I know that I feel more anxious when I’m waiting for test results or going to appointments.  Those days I take the anxiety with me.  All the days in between belong to me and the anxiety needs to find someone else to hang out with.”  These wise words can calm the thunder and comfort the soul.

Reflections For The New Year

I remember sitting in the synagogue on Rosh Hashanah and Yom Kippur as a child, watching the clock and counting how many pages of prayer were left in the service. I wanted to run out when the Rabbi began speaking. And the silent prayer – well, that just went on forever. “Oh my goodness, will this ever end?”

As an adult, I now appreciate the High Holiday services. I love the melodies that unite the congregation into one harmonious voice. The Rabbi’s message gives me much to contemplate. That silent prayer, though, is still a challenge. Occasionally, my private thoughts are comforting and invigorating but sometimes, the silence is too much to bear. Either way, it is in this stillness of my mind that I have learned the most about myself.

My true journey takes place in the quietude. All the events that happen in my life are just the junctures - first steps, graduations, jobs, weddings, children, or illness – are all merely points in time. It is in the quiet reflection that I ascribe the meaning.

When facing ovarian cancer or breast cancer, life may seem to swirl around you – doctors’ visits, scans, treatments, and follow-ups, while maintaining jobs and families. These things impact your family life, your financial well-being, and your emotional and physical health. I suspect that at one time or another you may have thought, “Oh my goodness, will this ever end?”  As Sharsheret Peer Supporter Beverly Levy shared in her National Ovarian Cancer Awareness Month blog post, “I’ve decided cancer is like Whack-A-Mole, the arcade game where you whack a little critter over the head and another one pops up where you don’t expect it.  But just like in the arcade, there are good times along the way.  You don’t know how many moles you will have to clobber, how long it will take, and how you’ll do it – but you will. I can’t enjoy today if all I can think about is tomorrow and I can’t do anything about it anyway so head up, smile on face, and enjoy all the great things life has to offer.”

In this holiday season, I encourage you to take advantage of the stillness, whether in prayer, meditation, or just finding a quiet time to reflect on how this past year has unfolded, what meaning it has held for you, and what your hopes, dreams, and aspirations are as you move forward.  All of us at Sharsheret hope that you will find strength, renewal, and meaning as you celebrate this upcoming New Year.

Speaking About the Unspoken Reality of Cancer

My grandmother died in 1995 after a long battle with breast cancer.  In all of the years of her illness, I cannot recall her using the word "cancer".  She spoke of being "sick", "weak", "unwell", and she asked me, on her death bed, to remember her.  "Don't forget me," she would say repeatedly, frail and bald and unlike the confident Bubby who had pushed me on the park swing as a child, arms made strong from years of sewing sweaters in a factory. I remember sitting beside her, law books in my lap as I studied for exams by her hospital bedside, thinking that her request was odd: "Don't forget me".  How could I forget her, my own grandmother, who had helped raise me?

But the reality of my grandmother's generation was that those with cancer were often forgotten. The disease itself was not discussed.  Some whispered about "Yeneh Machlah" - "that disease" - in Yiddish.  Others would refer to the "C word", without actually uttering the word itself.  Fears of "Ayin Harah" - the evil eye - shadowed real conversations about cancer, and concerns about marriagibility among family members forced many into a hiding of sorts.

Eleven years ago last week, I, too, was diagnosed with breast cancer for the first time - 28 years old, an attorney raising two young children.  And sadly, not much had changed in the Jewish community since my grandmother's diagnosis.  Despite the plethora of organizations addressing community needs, there was no Jewish response to breast cancer although 1 in 40 Jews of Ashkenazi descent carries a gene mutation that makes us almost 10 times more likely to develop hereditary breast, ovarian, and related cancers.  New research points to genetic susceptibility among Sephardi Jewish families as well.

I founded Sharsheret, a national breast cancer organization addressing the needs of Jewish women and families facing breast cancer, to fill that void.  In the past 10 years, we have launched 11 national programs, including one addressing ovarian cancer among Jewish families.  We have welcomed more than 1,600 women to our National Peer Support Network.  We have responded to more than 24,000 breast cancer inquiries, presented more than 250 education programs nationwide, and educated students on more than 150 campuses across the country.  We have been awarded a seat on the Federal Advisory Committee on Breast Cancer in Young Women and federal grants to develop programming specific for Jewish women and families affected by breast cancer.

Perhaps even more than Sharsheret has accomplished on its own, I am proud that we have paved the way to welcome neighbors into this once lonely community of cancer advocacy and support.  Today there are more than 30 Sharsheret Supports partners - Jewish organizations that develop local breast cancer and ovarian cancer programs nationwide - adding to the growing Jewish communal response to cancer.

As I mark my 40th birthday today, a two-time cancer survivor, I celebrate not only the life with which I have been blessed, but the lives of those, like my grandmother, whose cancer journeys - no longer a forgotten whisper - have found their voice.

What are we doing at this conference?

I’ve just returned from the 2012 ASCO Annual Meeting – one of the largest cancer-related conferences organized by the American Society of Clinical Oncology.  It is my second ASCO Meeting and my fourth conference this year.  It had me thinking about the sheer number of cancer-related conferences I have attended as a cancer patient, survivor, advocate, and Sharsheret staff member since I was first diagnosed with breast cancer 11 years ago.  Let’s just say: I’ve collected (and donated!) more canvas bags and pens than I will ever be able to use.

In 2012 alone, Sharsheret staff members have attended or presented at more than 13 conferences nationwide – gatherings that have addressed cancer genetics, young women facing breast cancer, women living with ovarian cancer, cancer and culture, and survivorship.

Why do we do it?  Because the information we learn and the connections we make all benefit you - the women and families of Sharsheret.  Whether we hear about new research in cancer care or find an organization that can provide you with a resource you may need over time, every conference offers us new “nuggets” to improve the services and care we provide our Sharsheret community.

Below, I’ve answered some of the questions you may have about cancer conferences.  If you’ve got any others, please feel free to contact me directly at rshoretz@sharsheret.org.   And if you decide to join us on the road, rest assured you’ll leave with “nuggets” of your own . . . and, at the very least, a new canvas bag.

What do we do at the conferences we attend?

Sharsheret staff members attend conferences as students, presenters, and exhibitors.  Our clinical staff members bring back new research, resources, and services that can benefit the families we serve.  As presenters, we share Sharsheret’s best practices with the national cancer and Jewish communities.  At exhibit halls, we connect with other advocacy organizations, health care providers, and Jewish community liaisons to broaden Sharsheret’s reach.

How can I access information and research that is presented at a conference?

In addition to connecting with our staff, many major conference organizers share slides, presentations, or videos with the public after a conference.  Visit the conference website to see if materials will be available to you.  For example, if you want to learn more about the breast cancer or ovarian research presented at the ASCO meeting this year, visit www.cancer.net for short summaries.  Always contact your health care provider with any questions you may have about your own health.

How can I determine if a cancer conference is right for me?

We let you know about upcoming conferences that might be of interest to you on our website and in our bi-monthly e-updates.  Feel free to call us for more information and to discuss whether a particular conference may be of interest to you. 

Can I afford to attend a conference?

Many conferences offer scholarships or travel waivers and some conferences are even free of charge. You can find more information by going to the conference website, or speaking directly to the person organizing the event who may be able to accommodate your financial circumstances. 

Know of a conference we should attend?

Share it with us!  We appreciate learning about important conferences in your community.  Many of our volunteers help us distribute materials at conferences nationwide.  Contact Rebecca Schwartz, Director of Community Engagement, at rschwartz@sharsheret.org with conference details.

Unwrapping Your Gifts

Every year on the holiday of Shavuot we celebrate receiving the Torah – a gift given to the Jewish people more than 3,000 years ago.  Most of us have been the recipients of kindness and generosity by virtue of our membership in the Jewish community and we, as a people, embrace the strong value of giving back in kind.

There are many layers to the giving and receiving of gifts.  Gifts can be given to mark a celebration or simply as a loving gesture. Some gifts, though offered with love and good intentions, may not meet your needs and the gift gets passed along – better known as the art of re-gifting. Sometimes, gifts are given with strings attached. And perhaps the purest form of gift-giving, are the gifts we give to ourselves.

I’ve heard some of you remark that being diagnosed with cancer has been a gift – having a second chance at life, appreciating relationships, and discovering what really feels important to you. Many of you don’t find cancer to be a gift at all. In fact, it’s a gift you would return without hesitation – with or without a refund.

Most of you fall somewhere in between. You would prefer having skipped the whole cancer thing all together, but have discovered many gifts along the way -  the gift of loving kindness, the gift of insight, and the gift of life.

In the hub of Sharsheret, I have witnessed tremendous and meaningful exchanges of gifts - words of wisdom passed along from women further down the road to those newly diagnosed. I have seen the selfless donations of time and money to support women and their families living with cancer.

Without a doubt, there are strings attached to cancer – but once untangled, most of you have given yourselves the greatest gifts of all. You have discovered inner strength, you have established a greater balance in your lives, and you hold a deeper appreciation of life and love.  And when these gifts were sometimes hard to find, you reached out to Sharsheret and opened yourselves up to receiving the support and guidance of our community.

I hope on this holiday of Shavuot, you kick up your feet, grab yourself a nice piece of cheesecake, and take a moment to unwrap all the wondrous gifts in your lives.

My Mom – My Rock

When I was 20, my parents came to see me unexpectedly at college. They told me that my mom had stage 2 breast cancer and was going to be having a mastectomy and chemotherapy in the coming months. I was scared for her and I was scared of losing her. My mom, my rock, was sick. She was the one who was always there for me, taking care of me, and now I had to watch her go through the process of surgery and treatment. The fighter that she is, she made it through with flying colors! Twenty years later, my mom is healthy and cancer free.

At the age of 20, you don’t really think cancer can happen to you but it was always in the back of my mind and I found myself constantly wondering, “what if?” So when I turned 35 I started going to a special program for women who are at increased risk for breast cancer. Imagine my surprise when 2 years later I was diagnosed with DCIS. Now my mom would have to watch me go through the same surgery, the emotional and physical pain of having a mastectomy. I opted for a double mastectomy with immediate reconstruction. My husband and I wouldn’t have been able to get through it without the love and support of my mom. She was there for me, taking care of my 3 kids, getting them ready for camp, driving them to their activities, cooking, and cleaning. At the same time, she made sure that I was comfortable and was a shoulder to cry on when I needed her support. She also told me about Sharsheret and the Link Program. I connected with Sharsheret and was able to speak to other women who had been through my same situation and they helped me during this difficult time in my life. They were able to guide me in speaking about my cancer with my kids. And of course, I will never forget the day I received my Busy Box and beautiful neck roll pillow from Sharsheret. I cried because I was so happy that people who had not even met me in person would care so much about me!

My mom is and will always be my rock. I would like to wish her and all of those other special moms a very happy Mother’s Day!