Our Voices: A Blog by Links, Callers and Volunteers

Welcoming The New Year

This past year, I was diagnosed with early stage breast cancer. My team of doctors prescribed chemotherapy and a dizzying array of tests and surgeries. As of this writing, my last surgery occurred a little over four months ago. There are moments when I think about what I’ve just been through and am stunned by the intensity of this last year and the fact that I am still here.

Though being sick is terrifying and at many times, infantilizing, cancer is a profound teacher. I’ve learned a great deal this past year, especially, that in addition to having a physical immune system, I also have a spiritual one. My spiritual care evolved in many ways. My brother and cousin flew out here to be with me and one of our rabbinic interns came to my apartment to sound the shofar as I wasn’t able to attend the High Holiday services last year, acts of kindness which I will never, ever forget. Many amazing friends from my synagogue community and from other parts of my life reached out and helped me with meals and with taking me to treatment appointments and holding my hand during chemo. Sharsheret was a huge part of strengthening my spiritual immune system. From pairing me with a peer supporter, connecting me to their staff genetic counselor who patiently explained complicated issues relevant to my being a BRCA carrier, to sending me a pillow so that I could rest more comfortably after surgery, the people at Sharsheret understood what I was going through.

As I continue my journey of transitioning from being a cancer patient to being a cancer survivor, it has become more and more important for me to pay it forward and help the next person who is diagnosed with this disease to navigate the world of coping with a life threatening disease. May we all continue to go from strength to strength.

Sharsheret Receives Highest Rating From Charity Navigator

We are proud to announce that Sharsheret has received a 4-star rating from Charity Navigator for sound fiscal management and commitment to accountability and transparency. America's premier charity evaluator, Charity Navigator works to advance a more efficient and responsive philanthropic marketplace by evaluating 6,000 of America's largest charities.  

"Receiving four out of a possible four stars indicates that your organization adheres to good governance and other best practices . . . and consistently executes its mission in a fiscally responsible way," wrote Ken Berger, President and CEO, Charity Navigator. "Approximately a quarter of the charities we evaluate have received our highest rating, indicating that Sharsheret outperforms most other charities in America. This 'exceptional' designation from Charity Navigator differentiates Sharsheret from its peers and demonstrates to the public it is worthy of their trust."

Thanks to all of you, our supporters, whose dedication has played a vital role in Sharsheret's growth. Our Board of Directors and staff will continue to work diligently to ensure Sharsheret exceeds expectations and merits your continued trust and commitment.
 
Click here to renew your support today.


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.

Supreme Court Gene Patent Decision: What It Means For You

Last week, the US Supreme Court ruled on a significant gene patenting case.  The issue before the Court was whether or not a company’s patents on the BRCA1 and BRCA2 genes could be upheld. The landmark ruling states that a gene is a naturally occurring product of nature, and therefore cannot be patented. The Supreme Court’s ruling has important implications for clinicians, cancer patients, and individuals who are at higher risk of a BRCA mutation than the average population either by personal or family history. Many say that the Court’s ruling will increase access to genetic testing by eliminating the monopoly on the test, which will thereby reduce the cost of testing significantly and allow for consumer choice.  For many years, the American College of Medical Genetics has asserted that gene patents “stand firmly in the way of good patient care, interfere with informed decision-making by patients, impede training of the next generation of lab professionals and restrict the flow of information that is critical to advancing medical knowledge and better medical care accessible to all.”  Therefore, some anticipate that this decision will better enable appropriate and more affordable testing, particularly for those who are uninsured or underinsured. 
 
Carrie Horton, MS, CGC
Director of Genetic Counseling
West Clinic
 
Brad Somer, MD
Medical Oncology
West Clinic

Supreme Court Rules on Gene Patents

This morning, the Supreme Court rendered its decision in the gene patenting case, holding that “genes and the information they encode are not patent eligible under §101 [of The Patent Act] simply because they have been isolated from the surrounding genetic material.”  The Court noted that Myriad Genetics, the laboratory that currently offers testing for the BRCA1 and BRCA2 mutations found in 1 in 40 Ashkenazi Jews, did not create or alter either the genetic information encoded in the BRCA1 and BCRA2 genes or the genetic structure of the DNA.  Though the Court noted that Myriad found an important and useful gene, it acknowledged that groundbreaking, innovative, or even brilliant discovery does not by itself satisfy the §101 inquiry and is therefore not subject to patent protection.

What does the Court’s decision mean for thousands of women and families at risk of breast or ovarian cancer or considering genetic counseling or testing? 

Call us at Sharsheret or chat live with our staff genetic counselor.  Thousands of women, men, and families reach out to us for support and information about cancer genetics.  We’ll walk you through your options, and connect you to others who have done the same.

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.

Mother’s Day Flowers

Finding a Mother’s Day gift for my wife Aviva is impossible. Let’s just say for her birthday in March, she got a sponge cake…that she made herself. The one reasonable gift I could get her is flowers, but she says she dislikes them because they’re expensive, die quickly, and make a mess when the petals fall off.

It was surprising to me, then, when Aviva and her sister Tova decided to sell flowers for Mother’s Day to benefit Sharsheret. Their mother passed away from breast cancer over ten years ago and they wanted to honor her memory with this sale. But why flowers, I wondered?

In their description of why they chose this fundraiser, Aviva and Tova wrote:

“As soon as Spring arrived, our mom would be outside working in the yard. We have amazing memories of helping her pluck weeds, plant perennials, and setting up the sprinkler perfectly to make sure each flower got watered. One year, we bought her a hydrangea bush for Mother's Day and each year after we would take pride in its growth and admire its beautiful lilac flowers.”

I never knew this about Hindy. Aviva and I started dating in December of 2001. Her mom was already sick then with her second diagnosis of breast cancer. She was still active at the time, but didn’t have the energy I so often hear people speak about when they mention her. By the time the summer came along, she was at the end of her life and watering flowers was the last thing on anyone’s mind. They had a beautiful yard, but I never knew how much Hindy worked to make it that way.

Aviva has picked up those same traits. She is the gardener in our house - trimming the bushes, planting flowers, even chopping down trees. It always amazed me how dedicated she was to making our garden beautiful and I never knew how much of it was influenced by her mother.

That’s the difference, I believe, between buying flowers and growing a garden. Toiling away at the garden is hard work with great rewards. Buying flowers is the easy way out. They are beautiful, but they don’t give you the same satisfaction as working on your yard. Gardening can be frustrating and can take years to truly perfect, but in the end, it’s something you can be proud of. In essence, it’s no different from parenting. You cultivate your kids over time and as they grow, you try to mold them into good, respectful people. It’s no surprise that Aviva, the yard expert, is also an amazing mom. Hindy, her mother, was exactly the same.

In memory of their mother, Aviva and Tova aren’t just selling flowers. They are working hard to cultivate a living memory by donating a Jewel to Sharsheret. They worked hard on finding a florist, writing copy, and spreading the word about Sharsheret. These flowers were not easy to buy; they were earned and cultivated, a trait they learned from their mother. I think she’d be proud. I know I am.

To make a donation in support of Sharsheret, please visit their online fundraising page at http://bit.ly/12oVX0A. Thank you so much.

Cousins Evan And Ally Honor The Memory Of Their Grandmother With A Sharsheret B’nai Mitzvah Project

We are going to be running the Baltimore Marathon 5K on October 12th in memory of our grandmother, Ruth Merwitz.  Our "Mom Mom" passed away this past January from Primary Peritoneal Cancer which has symptoms very similar to Ovarian Cancer.  Mom Mom was a very warm and caring person who had a very unique way of making everyone around her feel special.  Everyone loved her because she was such a joy to be around.  She loved to laugh and enjoyed everything about life.  She cared with such kindness and such a big and open heart and so unconditionally.  She was truly an amazing person.  All of us, her 8 grandchildren, thought we were her favorite because of the way she made us feel- so loved, so cared for, so special, so complete. 

Being Jewish was something that was very important to Mom Mom.  We always loved spending time with her having sleepovers, playing games, and going on outings. But we especially loved being with her for the Jewish Holidays.  We do not think we will ever taste matzo ball soup as good as hers!  Mom Mom will forever live in our hearts and we will always remember the special times we spent together.  

Doing things for others is what truly made Mom Mom happy.  To honor the loving person she was, we have decided to support Team Sharsheret for our Bat and Bar Mitzvah projects.  We hope that we can help save lives and prevent other families from ever having to feel the pain of losing someone they love.  Please consider either joining our team on October 12th or supporting us by clicking here to make a donation to Sharsheret in honor of our very special Mom Mom, Ruth Merwitz. 

As she used to always tell us,
we love you to the moon and back!

Ally Merwitz and Evan Feuerman

A Fifth Question

The New York Times recently ran an article by Susan Gubar, “Living With Cancer: The Good Patient Syndrome”, that questioned the importance of being a model patient. When Susan was first diagnosed, she was agreeable, nodding politely when meeting with her doctors. She worried that if she asked too many questions, she would be unintentionally neglected or harmed by her medical team.

One woman in Sharsheret’s Embrace group for women living with advanced cancer noted that each time she went to an oncologist appointment she felt unnoticed by the office staff and her doctor. One day, she went straight to her appointment from a Brit (circumcision). She was dressed up and wearing makeup. The office staff was quite complimentary and paid her a lot of attention. Her oncologist, who typically spoke to her while reading her file, engaged in eye contact and remarked how wonderful she looked. This woman decided that from then on, she would put on some lipstick and go to her appointments well-dressed.  She told the group she felt as if she was now “dating” her oncologist - she wanted to be noticed.

Many women call Sharsheret with questions following a doctor’s appointment or scans – questions that are reasonable to ask their doctor during an appointment. Yet, they are afraid to ask these questions because they don’t want to come across as untrusting. When you have concerns, you may not pick up the phone and call the doctor because you “don’t want to bother them”. You worry about being labeled a “difficult patient”. At the end of the day, it’s your body, it’s your life.  Don’t be afraid to speak up and advocate for yourself because if you don’t, something serious may go unnoticed.

As we prepare for the Passover holiday, we are reminded of how the Jewish people were obedient and compliant for fear of further harm at the hands of the Egyptians. Moses was also worried about his ability to stand up to Pharaoh on behalf of the Jewish people, worried that he would make an already bad situation worse. In reality, it was only when Moses spoke up and advocated for his people that he and the Jews were set free. What would have become of the Jewish people if Moses did not stand up for them? I’m adding this question to the already established Four Questions that will be recited at my Seder as a reminder to empower myself in the pursuit of health and well-being.