By: Shera Dubitsky, Sharsheret Clinical Supervisor
In just a few days, Jews all over the world will participate in the Passover Seder. We will read from the same text, engage in many of the same rituals. Yet each Seder is unique. Every family brings its own traditions to the Seder, how they prepare, who hosts, who takes the lead, and who will clean up the next morning after only a few hours of sleep.
Individually, our Seder experience changes year to year. It is quite amazing how I can read the same story over and over again, yet each repetition highlights different aspects of the story depending on what’s going on in my life at the time. Perhaps this is why we are directed to read this story annually. We are challenged to find new meaning and garner new strength to guide us along the varying milestones of the journey, bringing us out of uncertainty to seder (order).
I imagine that for those of you, like me, who have a family history of cancer, you may relate to those Jews who were debating whether or not to leave Egypt. “Is this a journey that is necessary for me to take or will I be safe enough here?”
For those of you who are diagnosed with breast cancer or ovarian cancer, perhaps you connect with the people who felt rushed to make a decision with limited information and time to prepare as they embarked on their journey to the unknown. “I know that my well-being is in jeopardy in this moment. I am tired. I am scared. How should I push forward?”
Many people who left Egypt survived the splitting of the sea, wandering in the wilderness, and the anticipation of the journey into Canaan, wondered about the challenges ahead. Perhaps their story resonates with those of you who are post-treatment. “I am in awe of everything that I have survived to this point. I have learned so much about myself and my family and friends, but there is that little voice whispering in my ear, what lies ahead for me?”
Family members who have a loved one living with breast or ovarian cancer may relate to Moses’ family, who played an active role in the Passover story. “How can I best support my loved one?”
These Four Questions are just a sampling of the questions we hear at Sharsheret on a daily basis. We receive calls from women differing in age and cultural background. Women call us at varying junctures along their breast cancer or ovarian cancer journey. Although each individual and each family will have its own approach to coping and navigating this journey, Sharsheret is here to help provide seder (order), to share information, and to offer support along the way. As you continue to revisit the Passover story, we encourage you to revisit Sharsheret along your journey. Here you will find renewed meaning and renewed hope.
Showing posts with label Ashkenazi. Show all posts
Showing posts with label Ashkenazi. Show all posts
Thursday, April 14, 2011
Thursday, April 7, 2011
My Breast Cancer Journey
By: Evie Kaplan Downing of Wilmington, Delaware, Sharsheret Caller
My journey with breast cancer began on Mother’s Day 2009. I was 28-years-old. While breastfeeding my 21-month-old son, I noticed that my right breast hurt. Instead of feeling the small, firm spot signaling a clogged duct that I expected to find, I felt a much larger lump. I immediately made an appointment with my doctor who was, thankfully, able to see me that day. After she examined my breast, she assured me that she didn’t think the lump was cancerous. Just to be safe, she wanted me to have an ultrasound and a mammogram and probably a biopsy too, but she didn’t think I had anything to worry about. I went for my mammogram a few days later feeling lighthearted and unconcerned. I thought nothing of it when the technician told me that the radiologist needed to speak with me. He explained that my right breast showed large calcium deposits that were “consistent with carcinoma.” Before I knew it, I had an appointment with a breast surgeon. A biopsy showed that the tumor was, indeed, cancerous. I had a lumpectomy and 16 cancerous lymph nodes removed, and then learned I would need a mastectomy. I met with an oncologist who suggested I have genetic testing done because I am of Ashkenazi descent and was diagnosed at such a young age. At the time, I had no idea that being an Ashkenazi Jew put me at higher risk. The test showed that I was BRCA2 positive, so I opted for a bilateral mastectomy. The mastectomy was followed by 5 months of chemotherapy and 4 weeks of radiation, as well as breast reconstruction with expanders followed by silicone implants.
My involvement with Sharsheret began when my mother suggested that I call. I was really touched by how much the clinical staff cared about my well-being. They set me up with a peer supporter who had also been diagnosed while she was still breastfeeding, but at the time, I was still in too much shock over my diagnosis to make the call. After I completed most of my treatment, I began thinking about how I would have to put off having more children and found it very upsetting. Sharsheret set me up with another peer supporter. I realized that I’m not quite ready to face delayed childbearing head-on, but it is comforting to know that when I am ready, there is someone there for me to speak with who has been through this as well. This past December I participated in Sharsheret’s teleconference on prophylactic surgery for breast and ovarian cancer. I found it reassuring to hear women who had undergone prophylactic surgery speak about the pros and cons and about how it had affected them. The teleconference also answered several questions I had about having an oophorectomy.
I will be taking medication for the next five years. I will consider having an oophorectomy before I turn 40 because of my increased risk of ovarian cancer. At the same time, I learned that I am a whole lot stronger than I knew. I learned what an amazing group of friends I have. My husband and I realized how much we really mean to each other and that we really do want to spend the rest of our lives together. It has not been an easy journey, but I have learned a lot about myself and the world. I would never wish breast cancer on anyone, but I would also never take back my experience.
My journey with breast cancer began on Mother’s Day 2009. I was 28-years-old. While breastfeeding my 21-month-old son, I noticed that my right breast hurt. Instead of feeling the small, firm spot signaling a clogged duct that I expected to find, I felt a much larger lump. I immediately made an appointment with my doctor who was, thankfully, able to see me that day. After she examined my breast, she assured me that she didn’t think the lump was cancerous. Just to be safe, she wanted me to have an ultrasound and a mammogram and probably a biopsy too, but she didn’t think I had anything to worry about. I went for my mammogram a few days later feeling lighthearted and unconcerned. I thought nothing of it when the technician told me that the radiologist needed to speak with me. He explained that my right breast showed large calcium deposits that were “consistent with carcinoma.” Before I knew it, I had an appointment with a breast surgeon. A biopsy showed that the tumor was, indeed, cancerous. I had a lumpectomy and 16 cancerous lymph nodes removed, and then learned I would need a mastectomy. I met with an oncologist who suggested I have genetic testing done because I am of Ashkenazi descent and was diagnosed at such a young age. At the time, I had no idea that being an Ashkenazi Jew put me at higher risk. The test showed that I was BRCA2 positive, so I opted for a bilateral mastectomy. The mastectomy was followed by 5 months of chemotherapy and 4 weeks of radiation, as well as breast reconstruction with expanders followed by silicone implants.
My involvement with Sharsheret began when my mother suggested that I call. I was really touched by how much the clinical staff cared about my well-being. They set me up with a peer supporter who had also been diagnosed while she was still breastfeeding, but at the time, I was still in too much shock over my diagnosis to make the call. After I completed most of my treatment, I began thinking about how I would have to put off having more children and found it very upsetting. Sharsheret set me up with another peer supporter. I realized that I’m not quite ready to face delayed childbearing head-on, but it is comforting to know that when I am ready, there is someone there for me to speak with who has been through this as well. This past December I participated in Sharsheret’s teleconference on prophylactic surgery for breast and ovarian cancer. I found it reassuring to hear women who had undergone prophylactic surgery speak about the pros and cons and about how it had affected them. The teleconference also answered several questions I had about having an oophorectomy.
I will be taking medication for the next five years. I will consider having an oophorectomy before I turn 40 because of my increased risk of ovarian cancer. At the same time, I learned that I am a whole lot stronger than I knew. I learned what an amazing group of friends I have. My husband and I realized how much we really mean to each other and that we really do want to spend the rest of our lives together. It has not been an easy journey, but I have learned a lot about myself and the world. I would never wish breast cancer on anyone, but I would also never take back my experience.
Wednesday, April 6, 2011
You’re Too Young To Have Cancer
By: Marcia Donziger of Denver Colorado, Sharsheret Peer Supporter
I was 27 and thought I had a bladder infection. It turned out to be a tumor on my right ovary. At first, my gynecologist was not concerned. “Could it be cancer?” I worried. “No,” she replied, “You’re too young to have cancer.” I was married and trying to get pregnant at the time, so I scheduled surgery immediately to get it over with. The doctor assured me the worst that could happen is I’d lose one ovary and I would still be able to have children. She was confident the tumor was benign.
On the day of my surgery, I was wheeled into the pre-op room. That’s when the medical assistant approached me with a legal form to sign, agreeing to the potential of having a hysterectomy. My doctor and I never discussed this. Five hours later, the surgery was over, and I was in the recovery room. I was in a lot of pain. That’s when my doctor broke the news. “I’m sorry, but you have ovarian cancer. We had to do a complete hysterectomy.” Through the pain I heard, “You have cancer. You can’t have children.” The irony was that my doctor was six months pregnant. Her belly at my eye level made me feel even more devastated.
Stage IIIc ovarian cancer spread throughout my abdomen. I faced infertility, followed by a bowel obstruction, and six months of chemotherapy. One of the things I struggled with most was keeping friends and family up-to-date with what was going on. I felt the daily burden of not communicating effectively with those I loved who were so concerned. In 2007, I founded a non-profit organization to help all cancer patients and caregivers easily communicate with friends and family during the treatment process. MyLifeLine.org Cancer Foundation believes a strong support community is critical for cancer patients. We provide free, personal websites to cancer patients and caregivers so they can easily connect with family and friends, because no patient should ever feel alone.
The other major difficulty I dealt with was not knowing anyone else my age with ovarian cancer. The average age of diagnosis at that time was 61 and I was 27. The worst side effect was infertility and I couldn’t find anyone else who could relate to me. For this reason, I am so proud of Sharsheret for developing a peer support program for young, Jewish women living with ovarian cancer. I am excited to be a peer supporter and share the important message with other young women facing ovarian cancer that there is light at the end of the tunnel, and there are fertility options.
Today, my husband and I are the parents of twin boys, age 5 ½, who were born with the help of an anonymous egg donor and surrogate mom. Becoming a mom was the final piece to my healing, and I look forward to helping other young ovarian cancer patients through Sharsheret.
I was 27 and thought I had a bladder infection. It turned out to be a tumor on my right ovary. At first, my gynecologist was not concerned. “Could it be cancer?” I worried. “No,” she replied, “You’re too young to have cancer.” I was married and trying to get pregnant at the time, so I scheduled surgery immediately to get it over with. The doctor assured me the worst that could happen is I’d lose one ovary and I would still be able to have children. She was confident the tumor was benign.
On the day of my surgery, I was wheeled into the pre-op room. That’s when the medical assistant approached me with a legal form to sign, agreeing to the potential of having a hysterectomy. My doctor and I never discussed this. Five hours later, the surgery was over, and I was in the recovery room. I was in a lot of pain. That’s when my doctor broke the news. “I’m sorry, but you have ovarian cancer. We had to do a complete hysterectomy.” Through the pain I heard, “You have cancer. You can’t have children.” The irony was that my doctor was six months pregnant. Her belly at my eye level made me feel even more devastated.
Stage IIIc ovarian cancer spread throughout my abdomen. I faced infertility, followed by a bowel obstruction, and six months of chemotherapy. One of the things I struggled with most was keeping friends and family up-to-date with what was going on. I felt the daily burden of not communicating effectively with those I loved who were so concerned. In 2007, I founded a non-profit organization to help all cancer patients and caregivers easily communicate with friends and family during the treatment process. MyLifeLine.org Cancer Foundation believes a strong support community is critical for cancer patients. We provide free, personal websites to cancer patients and caregivers so they can easily connect with family and friends, because no patient should ever feel alone.
The other major difficulty I dealt with was not knowing anyone else my age with ovarian cancer. The average age of diagnosis at that time was 61 and I was 27. The worst side effect was infertility and I couldn’t find anyone else who could relate to me. For this reason, I am so proud of Sharsheret for developing a peer support program for young, Jewish women living with ovarian cancer. I am excited to be a peer supporter and share the important message with other young women facing ovarian cancer that there is light at the end of the tunnel, and there are fertility options.
Today, my husband and I are the parents of twin boys, age 5 ½, who were born with the help of an anonymous egg donor and surrogate mom. Becoming a mom was the final piece to my healing, and I look forward to helping other young ovarian cancer patients through Sharsheret.
Tuesday, April 5, 2011
Pregnant With Breast Cancer
By: Michelle Rosch of Naperville, Illinois, Sharsheret Peer Supporter
On February 18th, 2008, two weeks after my 27th birthday and eight months into my first pregnancy, I was diagnosed with Stage III breast cancer. Due to the aggressive nature of my cancer, I delivered my son, Aiden, a month early and had a double mastectomy with reconstruction one week later. The doctors informed me that I was estrogen positive and would risk the cancer returning if I had any more children. My wonderful sister-in-law, April, offered to carry my next child, so I immediately started receiving daily hormone shots to harvest my eggs starting a week after my surgery with just three weeks to finish the process before I started chemotherapy.
During the summer of 2008, I received six chemotherapy treatments every three weeks for four months. After 18 days I started losing my hair, so my husband, Mike, and I decided to shave our heads. I shaved his head and he shaved mine. We actually laughed and had a fun time doing it! I bought a few wigs but only wore them for weddings. I was most comfortable wearing a cute scarf, especially since it was so hot outside. After chemo, I had 7 weeks of daily radiation. The radiation made me feel tired and my skin felt like I had a bad sunburn, but it was very tolerable compared to the side-effects of chemo.
As 2009 began, I had a preventive hysterectomy and had my first breast reconstruction surgery 3 weeks later - all before Aiden's first birthday. I accomplished so much in a year and it felt nice for the first time to view myself as a strong and brave person. I especially loved my new short hairstyle! Over the next year I had my last reconstructive surgeries and here I am today, 3 years later. I'm healthy, happy, feeling great, and loving life!
The most important thing for me to do is give back and make a difference in the lives of other women living with breast cancer. Volunteering for Sharsheret as a peer supporter has been such a positive part of my life. I remember what a difference it made for me to have support from other young survivors and I am happy to give back in any way I can.
On February 18th, 2008, two weeks after my 27th birthday and eight months into my first pregnancy, I was diagnosed with Stage III breast cancer. Due to the aggressive nature of my cancer, I delivered my son, Aiden, a month early and had a double mastectomy with reconstruction one week later. The doctors informed me that I was estrogen positive and would risk the cancer returning if I had any more children. My wonderful sister-in-law, April, offered to carry my next child, so I immediately started receiving daily hormone shots to harvest my eggs starting a week after my surgery with just three weeks to finish the process before I started chemotherapy.
During the summer of 2008, I received six chemotherapy treatments every three weeks for four months. After 18 days I started losing my hair, so my husband, Mike, and I decided to shave our heads. I shaved his head and he shaved mine. We actually laughed and had a fun time doing it! I bought a few wigs but only wore them for weddings. I was most comfortable wearing a cute scarf, especially since it was so hot outside. After chemo, I had 7 weeks of daily radiation. The radiation made me feel tired and my skin felt like I had a bad sunburn, but it was very tolerable compared to the side-effects of chemo.
As 2009 began, I had a preventive hysterectomy and had my first breast reconstruction surgery 3 weeks later - all before Aiden's first birthday. I accomplished so much in a year and it felt nice for the first time to view myself as a strong and brave person. I especially loved my new short hairstyle! Over the next year I had my last reconstructive surgeries and here I am today, 3 years later. I'm healthy, happy, feeling great, and loving life!
The most important thing for me to do is give back and make a difference in the lives of other women living with breast cancer. Volunteering for Sharsheret as a peer supporter has been such a positive part of my life. I remember what a difference it made for me to have support from other young survivors and I am happy to give back in any way I can.
Monday, April 4, 2011
Breast Cancer For My 26th Birthday
By: Shira Gross of New York City, Sharsheret Caller
On the drive back to Manhattan after an incredible birthday getaway weekend, I received a phone call that would change my life forever. “Your pathology came back positive for Invasive Ductile Carcinoma.” I was diagnosed with breast cancer on my 26th birthday.
That following week was a blur comprised of doctor shopping, crying, reading scary things online, questioning my faith, etc. Before I had a second to breathe, I was at the hospital getting a core guided MRI biopsy of two other “questionable” lumps in both breasts. In my periphery I see the stoic and stoney-eyed technician who immediately became sympathetic when I started to cry. She asked me, "Are you familiar with King Solomon?" She then shared with me a snippet from his life. He wore a ring that said, “this, too, shall pass” and he would look to his ring during tough times. She told me to be brave like King Solomon and that I would get through this.
“This, too, shall pass” really became a mantra for me throughout this experience – despite how cliché it sounded at the time. I knew I would get through my lumpectomy and return to work just a few days later. I knew I would get through four rounds of chemo and losing my hair and social life, and now I’m even able to go out in my wig and still get approached at a bar and I got promoted at work! And ultimately, after having a change of heart, I knew I would get through my bi-lateral mastectomy and somehow resort back to a somewhat normal life.
I am very grateful for finding Sharsheret and being connected with a peer supporter who I can call with any questions. As a young woman with breast cancer, there were many issues that I faced that I did not feel comfortable speaking about with most people. Fortunately, Sharsheret introduced me to another young woman who provided me with incredible support.
I thank G-d that I caught this myself so early and that I am a survivor! Sometimes we get caught up in challenges and cannot see through, but we can draw strength from knowing that “this, too, shall pass.”
On the drive back to Manhattan after an incredible birthday getaway weekend, I received a phone call that would change my life forever. “Your pathology came back positive for Invasive Ductile Carcinoma.” I was diagnosed with breast cancer on my 26th birthday.
That following week was a blur comprised of doctor shopping, crying, reading scary things online, questioning my faith, etc. Before I had a second to breathe, I was at the hospital getting a core guided MRI biopsy of two other “questionable” lumps in both breasts. In my periphery I see the stoic and stoney-eyed technician who immediately became sympathetic when I started to cry. She asked me, "Are you familiar with King Solomon?" She then shared with me a snippet from his life. He wore a ring that said, “this, too, shall pass” and he would look to his ring during tough times. She told me to be brave like King Solomon and that I would get through this.
“This, too, shall pass” really became a mantra for me throughout this experience – despite how cliché it sounded at the time. I knew I would get through my lumpectomy and return to work just a few days later. I knew I would get through four rounds of chemo and losing my hair and social life, and now I’m even able to go out in my wig and still get approached at a bar and I got promoted at work! And ultimately, after having a change of heart, I knew I would get through my bi-lateral mastectomy and somehow resort back to a somewhat normal life.
I am very grateful for finding Sharsheret and being connected with a peer supporter who I can call with any questions. As a young woman with breast cancer, there were many issues that I faced that I did not feel comfortable speaking about with most people. Fortunately, Sharsheret introduced me to another young woman who provided me with incredible support.
I thank G-d that I caught this myself so early and that I am a survivor! Sometimes we get caught up in challenges and cannot see through, but we can draw strength from knowing that “this, too, shall pass.”
Tuesday, March 1, 2011
Only A Few NYC Triathlon Slots Left!
"Race Day was truly amazing! Training and racing with Team Sharsheret took me on a life changing journey. Thank you from the bottom of my heart."
Looking to compete in an elite Triathlon event this Summer? Team Sharsheret only has a few slots left for the 2011 Nautica NYC Triathlon on August 7! APPLY NOW by sending an e-mail to athletes@sharsheret.org with your name, your phone number, and a brief description of who you are and why you want to join Team Sharsheret.
We:
· Provide a coveted slot in the now sold-out Triathlon, race registration, and related fees
· Dress you in official Triathlon gear
· Offer bike training in New York's Central Park and Northern New Jersey, as available
· Can arm you with online running, swim, and bike training routines
· Surround you with athletes who will motivate and inspire you to reach the finish line in support of this important cause
You:
· Agree to raise a minimum of $5,000 for Team Sharsheret to support our national programs (We make it easy, with personalized pledge pages on Sharsheret's website!)
· Notify friends and family of your participation in this year's Triathlon
· Have the competitive experience of a lifetime
For more information and to apply now, please e-mail athletes@sharsheret.org with your name, your phone number, and a brief description of who you are and why you want to join Team Sharsheret.
Please feel free to share this with a friend.
See you at the finish line!
- 2010 Team Sharsheret Athlete
Looking to compete in an elite Triathlon event this Summer? Team Sharsheret only has a few slots left for the 2011 Nautica NYC Triathlon on August 7! APPLY NOW by sending an e-mail to athletes@sharsheret.org with your name, your phone number, and a brief description of who you are and why you want to join Team Sharsheret.
We:
· Provide a coveted slot in the now sold-out Triathlon, race registration, and related fees
· Dress you in official Triathlon gear
· Offer bike training in New York's Central Park and Northern New Jersey, as available
· Can arm you with online running, swim, and bike training routines
· Surround you with athletes who will motivate and inspire you to reach the finish line in support of this important cause
You:
· Agree to raise a minimum of $5,000 for Team Sharsheret to support our national programs (We make it easy, with personalized pledge pages on Sharsheret's website!)
· Notify friends and family of your participation in this year's Triathlon
· Have the competitive experience of a lifetime
For more information and to apply now, please e-mail athletes@sharsheret.org with your name, your phone number, and a brief description of who you are and why you want to join Team Sharsheret.
Please feel free to share this with a friend.
See you at the finish line!
Tuesday, February 8, 2011
How Do You Wear Pink?
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| Our staff celebrates Pink Day! Top (l to r): Ellen, Rochelle, Elana, Julie, and Sari. Bottom (l to r): Rebecca, Shera, and Adina. |
Tomorrow, thousands of “soldiers” from 68 schools across the globe will march together. Our army has soldiers stationed in high schools, day schools, college campuses, yeshivot, and seminaries. We like to call ourselves pink soldiers. We are an army that is ready to make a difference. We are an army that is here to show Jewish women and families affected by breast cancer that we stand by them. Our soldiers understand that when one person is hurting, we are all hurting. People may look at us and think that we serve as their hope and inspiration. However, those affected by breast cancer are our hope and inspiration. They inspire us to never give up the fight, to always keep going, and of course, to unite together in the battle against breast cancer. Join us for Sharsheret’s 2nd Annual Pink Day Worldwide and wear pink tomorrow - to school, work, around the house, or at the gym. Join our army of pink soldiers and show your support for Jewish women and families facing breast cancer.
Join Sharsheret's 2nd Annual Pink Day Worldwide tomorrow, Wednesday, February 9th!
Sharsheret's Pink Day Worldwide, launched last year by students on high school and college campuses across the globe, empowers students to educate their peers about breast cancer in the Jewish community and Sharsheret's national programs.
3 easy ways you can join Sharsheret's Pink Day Worldwide:
1. Rally your co-workers, family members, and friends - Ask them to wear pink tomorrow, take a "pink" group photo, collect $5 from each participant, and donate to Sharsheret.
2. Become a Sharsheret Facebook Fan - Change your status to: "February 9th is Sharsheret's 2nd Annual Pink Day Worldwide. Do you have your Pink on? Post this status in honor of Jewish women facing breast cancer." If you took a Pink Day photo, upload it to our page!
3. Donate online - Make your Pink Day donation online at www.sharsheret.org/payonline.php and choose Pink Day 2011 in the drop down menu.

For more information, contact Sharsheret's Program Manager and Campus Liaison Ellen Kleinhaus at ekleinhaus@sharsheret.org.
Tuesday, June 29, 2010
Facing breast cancer at 36…now what?
By: Pamela Wolfe, Sharsheret Peer Supporter
Every day for the past two and a half years, breast cancer has been a part of my life. It is a subject I live and breathe, and on any occasion, I’ll gladly try to educate others or answer questions. It is a subject I feel very knowledgeable about since I took the crash course, “So you are 36 and have breast cancer….now what?” I was very lucky though, because I had fantastic friends and family who held me up and helped me through my personal battle.
When my Hadassah chapter asked me to share my experience as a young Jewish woman with breast cancer at a local event, I happily accepted, eager to speak about a disease I feel I can’t do enough about. I was asked to highlight 5 unique things I learned that others might not know, which made me question what was unique about my experience? Doesn’t every woman know about breast cancer? It made me realize that while most women do know about breast cancer, they probably don’t know about the challenges faced by a 36 year-old woman who didn’t want to be treated like she was diagnosed at 65, who still had a dream of starting a family someday, and who chose not to do chemo in favor a new treatment protocol.
I shared the intimate details of my ”new” world, one where I take pills in the morning that have life-altering side effects, but are the key to sustaining my life. For me, it is life. For the people listening, it is a side of breast cancer they never knew about. I have had the honor of being part of Sharsheret’s Link Program and using my personal experience to help other young Jewish women facing breast cancer. I am one of the truly blessed ones. I am fighting and surviving. I feel as if the reason I am still here, alive today, is to do just what I have done: educate women, raise awareness, and help others fight the fight.
Every day for the past two and a half years, breast cancer has been a part of my life. It is a subject I live and breathe, and on any occasion, I’ll gladly try to educate others or answer questions. It is a subject I feel very knowledgeable about since I took the crash course, “So you are 36 and have breast cancer….now what?” I was very lucky though, because I had fantastic friends and family who held me up and helped me through my personal battle.
When my Hadassah chapter asked me to share my experience as a young Jewish woman with breast cancer at a local event, I happily accepted, eager to speak about a disease I feel I can’t do enough about. I was asked to highlight 5 unique things I learned that others might not know, which made me question what was unique about my experience? Doesn’t every woman know about breast cancer? It made me realize that while most women do know about breast cancer, they probably don’t know about the challenges faced by a 36 year-old woman who didn’t want to be treated like she was diagnosed at 65, who still had a dream of starting a family someday, and who chose not to do chemo in favor a new treatment protocol.
I shared the intimate details of my ”new” world, one where I take pills in the morning that have life-altering side effects, but are the key to sustaining my life. For me, it is life. For the people listening, it is a side of breast cancer they never knew about. I have had the honor of being part of Sharsheret’s Link Program and using my personal experience to help other young Jewish women facing breast cancer. I am one of the truly blessed ones. I am fighting and surviving. I feel as if the reason I am still here, alive today, is to do just what I have done: educate women, raise awareness, and help others fight the fight.
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Monday, September 21, 2009
I Stand with Tevye
by Susan Hessel(Also posted on Facebook)
http://shessel.wordpress.com/2009/08/10/for-other-jewish-women/
I stand with Tevye
Do you remember that scene in the musical Fiddler on the Roof when Tevye looks up at the sky and says to G-d, “I know, I know. We are Your chosen people. But, once in a while, can’t You choose someone else?”
It’s a joke among Jews that we really didn’t need to be chosen in so many ways that we are. Now I get to add breast cancer to that list. Or do I?
It’s certainly how I felt when my doctor called me a few weeks back and told me that she and the breast radiologist had been talking and thought that because of my “ethnicity” they should go one step further and I should have a breast MRI.
“My ethnicity?” I asked.
“Yes, didn’t you know that Ashkenazic Jewish women are at greater risk for breast cancer?”
“I’ll convert,” I told my doctor, maybe only a quarter kidding at that moment. (And yes, I did tell my rabbi I said that. He laughed.)
“I don’t think that will work,” my doctor said to my suggestion of conversion. “It’s hereditary.”
“Ahh,” I said, “I’ll blame my parents.”
Of course, to blame my parents, who are no longer with me, would be tacky and inappropriate. It would open me to similar feelings from my kids. They chose lousy parents heredity wise, but that’s another story.
I am of Ashkenazic – Central/Eastern European Jewish descent. And yes, I do have breast cancer and am about to have a mastectomy. But who knows if it is genetic or something related to the environment or simply the flying fickle finger of fate (think Laugh-In television show in the 1960s).
I have talked with other Jewish women who didn’t know about this connection either. I decided to do some research. This summary is from the National Human Genome Research Institution:
In 1995 and 1996, studies of DNA samples revealed that Ashkenazi (Eastern European) Jews are 10 times more likely to have mutations in BRCA1 and BRCA 2 genes than the general population. Approximately 2.65 percent of the Ashkenazi Jewish population has a mutation in these genes, while only 0.2 percent of the general population carries these mutations.
Further research showed that three specific mutations in these genes accounted for 90 percent of the BRCA1 and BRCA2 variants within this ethnic group. This contrasts with hundreds of unique mutations of these two genes within the general population. However, despite the relatively high prevalence of these genetic mutations in Ashkenazi Jews, only seven percent of breast cancers in Ashkenazi women are caused by alterations in BRCA1 and BRCA2.
I really, really, didn’t know about that Ashkenazic Jews were at higher risk. And, I have done more than my fair share of medical writing. It was probably information that I needed to know but wished I didn’t know.
However, it’s not all that clear cut. Science Daily reported in 2006 on a study in the American Journal of Public Health that challenged “This population-based approach, warning that disparities in access to care and other unintended consequences for specific ethnic groups can result, and may have already occurred.”
“The science of breast cancer genetics has been marked by methodological inconsistency in how researchers defined ‘Ashkenazi Jew,’” said study coauthor Sherry Brandt-Rauf, J.D., associate research scholar at the Center. Most scientists relied on study participants’ self-identification. Ashkenazi Jews are descended from Jews who lived in central and Eastern Europe, but a complex history of migrations, and multiple cultural and religious meanings of Ashkenazi, makes self-identification problematic.”
At any rate, I was talking with a woman who had breast cancer several years ago and she only discovered after genetic testing that she was Jewish. (The geneticist wishes her a Happy Passover.” Her family had decided to become Christians after coming to this country at the turn of the 20th century. But it was funny, this woman remembered hearing Yiddish many years ago and understanding what the women were saying. At the time she thought she was clairvoyant.
The Chicago Center for Jewish Genetics Disorders also discusses the issue. Here is its Summary of BRCA1 and BRCA2 Facts:
·Certain ethnic groups are at increased risk for having BRCA1 and BRCA2 mutations; three particular mutations are more common among Ashkenazi Jews.
·Women with mutations in BRCA1 or BRCA2 are more likely to develop breast or ovarian cancer but are not guaranteed to do so.
·A BRCA1 or BRCA2 mutation is more likely to be found in an individual with a family history of particular cancers.
·Women with BRCA1 or BRCA2 mutations are more likely to get cancer at a younger age than the general population.
·Men can also have BRCA1 or BRCA2 mutations, which puts them at an increased risk for prostate, breast, and some other cancers.
·A BRCA1 or BRCA2 mutation can also be passed down through the father so it is important to consider both sides of the family history.
·The decision to get tested can be very complicated. Talk to your doctor or a genetic counselor if you are interested in testing.
What does this all mean? I guess to those of us who are Jewish women, we should be very vigilant. Get regular mammograms and don’t panic. Hey, that also applies to non-Jewish women. I didn’t think I had any family history of breast cancer, but my grandmother died of some kind of cancer when I was 3. My friend who had cancer and later discovered she was Jewish suggested there was no way of knowing if whatever cancer my grandmother had was lymphoma as we know it today. Then maybe the cancer was in the lymph and then spread. I’m going to ask for genetic testing.
By the way, there is one Jewish breast cancer link that is confirmed: My certificate of Bat Mitzvah (with four other women at CSOA) from 2001 arrived on the day of my biopsy last week. And that link did not require millions of dollars in research to identify. J
My mom and I used to joke about the expression, “Now is not the time to panic.” We wondered if they – whoever they are – would send out a memo or appear on TV and radio to announce, “Now is the time to panic.” At that point we would run in circles with our hands up in the air screaming.
The good news is with technology, they can send the panic message via email, text, by Twitter and Facebook.
I haven’t received it so far. And not that I would want to cause harm to anyone else, but like Tevye asked, “Once in a while, can’t you choose someone else?”
Tuesday, August 18, 2009
I Took My Dog for a Walk and Came Home with Breast Cancer
By: Diana AbehsseraSharsheret Link
"If you asked me what I came into this world to do, I will tell you: I CAME TO LIVE OUT LOUD."
- Emile Zola
Shortly after my cancer diagnosis, I began to receive good-hearted advice from my family and friends. They all wanted me to go to a support group, to reach out to people who were going through the same plight. Why? Because my circle could not relate to me, they did not think they could comfort me or support me like those with cancer could. After all, how many 32 year-olds do you know with Stage III breast cancer? I was the only one that I, myself, knew and I wanted to keep it that way.
For me, I knew that it was critical to keep going at the same pace. My strength came from the living, so at each chemotherapy session, I would sit with friends who all took time from their busy schedules to join me for a round of infusion, cupcakes, funny stories, and lots of laughs. We would laugh so hard and so loud that I remember saying one time, “Guys, we have to be a little quieter, there are sick people here.” Honestly, it was only when they stopped laughing and looked at me that I realized I was one of those sick people.
It was time to reach out for help when I knew that a double radical mastectomy was the next course on the menu to health. I became desperate to speak to someone who could help me accept the surgery as treatment and understand what life would be like afterwards. It was then that I reached out to Sharsheret and spoke to a clear-minded, sympathetic, and strong-willed Clinical Supervisor, Shera Dubitsky. In one swift month leading up to my surgery, I was able to grasp the concept of my illness and finally understand that I was, in fact, sick and needed this surgery and subsequent treatment to survive. With Shera, I was able to speak about G-d, not speak about G-d, to cry, to laugh, to grieve, to accept, to move on, to learn to be happy with my “new normal” self. Reaching out to Sharsheret was one of the most rewarding experiences I had, and I cherish the generosity and kindness that I received. It was the only organization I contacted, and for me, luckily and gratefully, it was the right one.
My story goes something like this: I took my dog for a walk one beautiful August day and came home with breast cancer. Yep, that's exactly what happened. I was living my life, getting ready to go out of the country for business, and then…BOOM! Bella, my dog, tugged sharply on my arm during our walk and pulled out a massive tumor from my left armpit. To be more specific, she jerked me off the ground and what I initially thought to be a bad sprain or a torn muscle, ended up being a large mass hanging out of my left armpit. After the biopsy, we heard those haunting words that suddenly transformed our lives, breast cancer, Stage III. Yikes! I was only 32 years old, with no family history, no kids yet (after two years of trying unsuccessfully). I thought to myself, they must be JOKING!The avocado-sized mass that my dog pulled out of my armpit was a lymph node that was already engorged with cancer. And so I was thrust into chemotherapy a few days after diagnosis. There was no time to wait, no day to waste before beginning treatment. I was told that chemo might kill my chances of ever having children, but I needed it to live today. I was told that it might cause other cancers later in my life, but I needed it to live today. I was told that it might give me heart failure in the future, but I needed it to live today. There was NO OTHER CHOICE for me. Before each treatment, I asked if they were sure that I had cancer. I sounded like a fool, but I just wanted to make sure they weren't pumping me with poison for nothing! That makes me a chemo veteran, and for those of you who are in my good company, you know that it is a war. And so I had to quit my newly-scored, travel-intensive job with a top advertising agency and assume my new role as the CEO of my cancer treatment.
I am convinced that the ONLY reason I survived this ordeal thus far, and mostly intact, is because my family and friends willed me through it. Every chemo session was a little party. Every other week as I sat in the NYU Cancer Institute, I was surrounded by my family and friends. My husband, Danny, became my rock. My parents put their lives on hold and would drive up from Virginia; my pals would drive up from surrounding states. My friends would show up and surprise me with food, with gifts, with manicures, with all sorts of tokens. We joked, we laughed, we looked at old pictures and silly magazines, we were just us, in every sense, and at no time did anyone show me pity. Their presence alone was the only inspiration that I needed to keep moving forward. Somehow everyone knew just what to do, just what to say and what NOT to say. People were flying in from as far as California and Amsterdam to sit with me through chemotherapy, to cheer me on. How could I ask for more? I would sit there with the drugs flowing into my arm and just marvel at how all of my worlds were colliding. My friends from all of my former lives were becoming friends with one another. It was a gift to me; it was the ultimate happiness and peace. In those moments I felt so loved, so lucky.
Even though I am an Ashkenazi Jew, my oncologist was almost certain that this was not a genetic cancer and recommended a lumpectomy. “Okay, I can handle that,” I thought. The only thing we were waiting for were the results of genetic testing, which was done while I was undergoing chemotherapy. I tested positive for BRCA 1 which meant that the cancer was, in fact, genetic and would return with great certainty in my lifetime. My medical team quickly recalculated all the odds and strongly recommended a double radical mastectomy. I was in my early thirties and they wanted to give me every chance possible to beat this particular cancer.
And so, that is what I did, with great difficulty. Difficult, not because of vanity, but because it was yet another hurdle to overcome and because I was afraid of losing a piece of myself, both literally and metaphorically. I could not wrap my head around it no matter what I did, not that I had much time. I finished chemotherapy on December 9, 2005 and on January 11, 2006 I had the surgery. Both breasts were removed as well as 14 lymph nodes from my left armpit.
All of the treatment, physical therapy, and surgeries took nearly two years. I was in full-blown menopause experiencing hot flashes, irritability, mood swings. My oncologist, knowing how much we wanted a child, said that he would sign all of the adoption papers we needed. Another oncologist of mine actually offered to be a surrogate for us. Friends stepped up to be egg donors. It was overwhelming and we were moved. The research for adoption options lead to dead ends from a financial perspective and also because the adoption agencies usually require that the cancer patient is in remission for at least 5 years before being approved. We looked into many options, and decided that we would become parents regardless of how it came to us. Then we dropped the issue.
In January of 2008, Danny and I returned to Israel to visit his family. We had not been there in three years because of the cancer treatment and the surgeries that followed. Although I did not grow up religious, I did want to go to the Holy Land and give thanks for surviving my cancer. That was my heartfelt wish, and I knew exactly what I wanted to do. I had a 2-part mission - I wanted to go to the mikvah and spiritually cleanse myself from the disease, and I wanted to go to the Kotel and give thanks to G-d for having survived the disease. And I did just that.
I went to the mikvah on January 16, and we went to the Kotel on January 17, 2008. Sometime between the mikvah and the Kotel, I became pregnant. My oncologist, upon hearing the news, told us that I was not far enough away from the cancer, that I needed to wait at least three years (it had only been two) before even thinking about trying. He told us that if we wanted to do the right thing for my health, then we would terminate the pregnancy. It was a very sad conversation for him and for us. Very quickly, I decided that I would not strip myself of this unbelievable gift and that we would deal with whatever came our way when and if it did.
We did not know what to expect from the initial baby ultrasound. Would we hear something, would we see something? Were we really pregnant, or would the ultrasound show us that this was just a dream? The technician looked at her screen and we looked at the monitor hanging from the ceiling. She was talking nonchalantly but we hung on to her every word. When she found the heartbeat she said, "There's one, and there's the other one. You have two babies!" WHAT!?! That's when time stopped and the room started to spin. It was the most defining moment of my life. Twins, it was unbelievable. My dear oncologist, who I adore, jumped on the baby train as soon as he heard that it was twins. My oncologist told me that I was his first patient to conceive post-treatment. The nursing staff told us that the entire cancer institute erupted in happiness when they heard about my pregnancy. We were so happy to share this pregnancy with everyone, to finally share and enjoy good news for once!
My oncologist and his nurse came to visit us and meet the babies in the hospital. To see my doctor hold my daughters was the full-circle moment that I hoped for but never imagined. It was magical for all of us.And so, I write my story here to say that there IS hope. There IS life after cancer. I am beyond fortunate, and I realize that every breath is a gift. I am in love with my life. And every time I walk in my neighborhood and pass the intersection where my dog pulled my arm that day, I look up into the sky and I say sometimes to myself, sometimes aloud, "THANK YOU G-D! Thank you Bella!"
Labels:
Ashkenazi,
BRCA,
breast cancer,
Sharsheret,
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