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Just returned from a 90th birthday celebration bike ride from Boston to Newport (Rochelle Shoretz's 40th and my 50th). The cycling group was organized by a friend, Richard Shuster, who has as large a personality as Rochelle's. It was not a charity ride. Instead, these annual Shuster rides are all about pure joy and being mindful of life's blessings. In our group of 40 bikers, there were three cancer survivors and a woman whose daughter is BRCA positive, as well as Andy Seidman, a renowned breast cancer oncologist at Memorial-Sloan Kettering Cancer Center.
The first day had its share of a few treacherous roads but then we navigated on to a beautiful bike path. As I biked alongside Rochelle, she was drafting behind Andy and looked at me and said how surreal it was to be riding on Andy's tail. Just as we pulled into the Biltmore Hotel in Providence, Rhode Island, having clocked 52 miles, the sky opened up and there was a torrential downpour. We considered ourselves blessed simply by the fact that we managed to stay dry.
The second day began with an "official" toast to the "most inspirational rider", who briefly spoke about Sharsheret as I stood beside her clad in my Sharsheret cycling gear. After riding along a 17-mile bike path along the water, the day ended in Newport as we biked into a park bordering the Atlantic Ocean with kids flying kites across the sky. Spectacular!
As I biked alongside my daughter Kayla, who will be college-bound by the end of the upcoming school year, I was reminded of how unsuccessful we were at flying kites when she was younger. I felt blessed not just because kites flew in the sky rather than the threatening showers that were predicted earlier in the morning, but also for celebrating my 50th birthday, biking next to her.
Birthdays take on a more special meaning after a breast cancer diagnosis. It did not surprise me that Rochelle had the physical stamina for the 100-mile bike journey. It was the first time I witnessed how she had the stamina to keep retelling the Sharsheret story. The wheels of joy and embracing life's blessings kept us going. Next year, we will clock the extra one mile to get us to a century!! The year after that we will aim for 120!
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.
Just two more days until we hit the West Side Highway, the Hudson, and Central Park for the Aquaphor NYC Triathlon. Months of training, awareness-raising, and fundraising will culminate at the finish line. You’ve accomplished so much already – and our work together has only just begun! As Team Sharsheret athletes, you have become ambassadors for the work that we do – supporting families, educating communities, enhancing the care that medical providers offer their young cancer patients.
This year, we debuted a short film, “It Takes a Team”, that features our incredible athletes. Although it may not really take a team to finish the triathlon, it certainly does take a team to do all that Sharsheret does. We reach more women because of the awareness you raise. We launch more programs because of the funds you raise. Sharsheret is the product of all of our efforts.
So when you cross that finish line on Sunday, we’ll be cheering you on – for what you’ve accomplished already, and for what we will continue to do together in the months and years ahead!
Have a great race!
I never signed up for this…..and one of the major items on that list was cancer. So you’d think—and I certainly thought—if I was fortunate enough to survive, the last thing I’d want for the rest of my life was to have anything to do with cancer ever again.
I never would have imagined that I’d feel the opposite, that cancer would occupy such a huge place in my heart and my life so many years after I thought I would leave it behind.
It’s not that I constantly dwell on my own experience; I don’t. It’s that I want, almost NEED, to be involved, to make a difference in the lives of other people with cancer, as corny as that may sound.
And many, many other survivors feel the same way.
In the years since I had cancer, survivors have become more activist as individuals and an increasingly powerful force as a group. Survivorship has matured as a scientific field of study, and so has advocacy on behalf of survivors.
At the National Cancer Survivorship Research Conference which I attended recently, twenty survivor advocates received scholarships—coming together from all over the country, to meet and learn from the experts, and each other—and take what they learn back to their organizations and their communities.
Part of the group of Survivor Advocates
Many advocates have had cancer themselves. Probably each of them has a story that could break your heart, and then lift it back up. These are just a few examples:
Tonya Pan, diagnosed with Non-Hodgkin’s Lymphoma at age 15, endured two years of chemotherapy while going through high school. Today she has a leadership role in the American Cancer Society; and is studying for a Ph.D. in Clinical Psychology, planning to be a research professor, and help improve the lives of cancer survivors.
Rochelle Shoretz, an attorney and a mother of two children, clerked for Supreme Court Justice Ruth Bader Ginsberg before being diagnosed with breast cancer at age 28. She founded an organization for young survivors; and although she is now living with stage IV cancer, she devotes her considerable energy and talents to advocacy work.
Susan Leighton survived stage III ovarian cancer not just once but twice. Today she plays an active role in representing ovarian cancer survivors and promoting legislation on their behalf, including testifying before Congress.
Pat Gavin survived both pharyngeal cancer and melanoma. Today he merges his experience as a survivor with his background as a pharmacist, bringing the voice of the patient to the research table.
Joya Harris is a young mom of two children and a breast cancer survivor. She uses her Masters in Public Health and her personal experience to help bridge the gap between what happens in the laboratory and how the science will affect patients.
Amy Geschwender is a survivor of brain cancer. She holds a Ph.D. in cell biology and has studied cancer as a research scientist, which makes her perspective on cancer and her advocacy work both professional and personal.
They all exemplify something I believe: that one key component of survival is the ability to look beyond yourself.
In a session on resilience, Dr. Keith Bellizzi explained that cancer researchers have always approached survivorship based on the deficits survivors have. He suggested an additional approach based on strengths—–to draw out and build on the strengths that survivors have.
The people in this group are proof of those strengths. I felt privileged, and inspired to be with them.
Reprinted with permission from http://blog.darrylepollack.com/2012/07/the-strength-of-survivors/
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 firstname.lastname@example.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 email@example.com with conference details.
Among my many identities, I am a Jew and I am a cancer survivor. The intersection of these two roles inspired me to get involved with Sharsheret.
Two summers ago, my routine pap smear showed misplaced and mysterious cells. Follow-up biopsies and, ultimately a full hysterectomy, showed that I had cancer in my ovaries. So, I got the “spa treatment” at Smilow Cancer Hospital – my words for what was really a four-month chemotherapy regimen. I lost my hair, 30 pounds, most of my strength and energy, and learned more about myself and life than I ever thought possible.
Cancer for me was an opportunity to really get to know myself and see my family and friends through entirely different eyes. What I didn’t do was let cancer get me down. I found an inner strength I never knew I had. I found the ability to laugh at my side effects. I found that my husband really did know how to do dishes (and much more) and care for me in the most loving and supportive way. I expected to be providing emotional support to my daughter and elderly mother, when, in fact, they are the ones who helped me find my strengths and gave me just the right amount of support, without making me feel that I needed it.
During my recovery, I went to a Jewish Federation of New Haven event where Rochelle Shoretz, Sharsheret’s Founder, was the keynote speaker. I didn’t want to think about cancer and I recall telling her before she spoke, “if this gets too cancer-y, I’m outta here”. It wasn’t, and I stayed. I had been thinking for some time that I wanted to give back, appreciative of the great care and attention I had been given. But, I didn’t know how until I learned about Sharsheret.
That night, I contacted Sharsheret to say I wanted to spread the word about this marvelous organization and become a peer supporter. I learned so many positive things through my cancer experience and I want to help others who have my diagnosis. I learned what it’s like to be on the receiving end of support, to have someone to talk to who can only understand based on a shared experience, and someone who will just let me talk without comment or judging. That’s what I want to do as part of Sharsheret’s peer support program.
After nine months of being cancer-free, my cancer returned and I’m back in chemotherapy. Different cocktail and a different experience. But, once again, my body is fighting as hard as it can to be cancer-free. Some things haven’t changed the second time around. I want to enjoy life every day – the little joys and the big ones. And, with those around me and through Sharsheret, I plan to be there for others for a long time to come.
© 2014 Sharsheret: Your Jewish Community Facing Breast Cancer
Sharsheret is a 501(c)(3) charitable organization ID# 13-4198529
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