Our Voices: A Blog by Links, Callers and Volunteers

My New Normal

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

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

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

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

Three Was Always My Favorite Number

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

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

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

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

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

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

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

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

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

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

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

My Survivorship Story

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

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

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

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

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

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

Let’s Talk Turkey

After cooking and eating the equivalent of many Thanksgiving meals from Rosh Hashanah through the holiday of Sukkot, the last thing I want to do is “Talk Turkey” or “Talk Any Type of Poultry.” Though in the spirit of the American idiom “Talk Turkey,” on this American holiday of Thanksgiving, we encourage you to serve up a great conversation that sheds light on your family history.

As we know, in the general population, 1 in 345 individuals carries a BRCA gene mutation. In the Ashkenazi Jewish population, 1 in 40 individuals carries a BRCA gene mutation.  Loosen your belt, and just digest that for a moment. Jewish men and women of Ashkenazi descent are at 10x greater risk of carrying a BRCA gene mutation that increases the risk for hereditary breast cancer and ovarian cancer, and possibly skin, colon, pancreatic, and prostate cancers, too.  Many adults are not aware of their own family medical history.  Learning your family history can empower you to take action and share important health information with your loved ones.

Since 2004, Thanksgiving has been declared Family Health History Day by the Surgeon General. This national public campaign encourages all American families to learn more about their family health history.  We encourage all families in our Jewish community to collect and share information about your family health history with one another. On a day that focuses on gratitude, we can be thankful that we live in a time where preventative healthcare is integrated into standard health practices.

So the next time you ask Grandma to pass the turkey, have her include a healthy side dish of family history.

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/

Adopting a Patient Perspective

When Karin Charnoff-Katz, MD, was diagnosed with breast cancer, she entered the patient experience and left a changed physician.

On my way to work as a general radiologist in Memphis, I detoured to stop for a routine screening mammogram. I was 41 and a few months late for my second annual screening. I was not overly anxious. My white attending physician coat provided me with an illusory protective shield. I believed the coat granted me a special immunity of sorts. I did not even wait for an official read after the imaging, as I was in too much of a rush to get to work. It seemed at that phase in my life, I was always multi-tasking and perennially in a hurry. Between working, losing my mother and mother-in-law to ovarian cancer deaths at young ages, and having three small children at home, every moment was teeming with activity and responsibility. I often put on makeup in the mornings while stopped at red lights in my car. Maybe that explained my less than stellar driving record.

To read Dr. Katz's complete story from the American College of Radiology Bulletin, click here.

Sharsheret Survivorship Program Continues to Thrive

“I was thrilled to receive your breast cancer survivor kit. It literally made my day. The cookbook is fantastic, and the information provided will definitely help me during my survivorship journey. I keep my kit in the great tote bag and refer to it often. It is usually the first thing I look at if a question occurs to me. You all do wonderful work and this was so supportive to me. I will share it with other survivors as well as those beginning their journey.”
- Joanne, Baton Rouge, LA

In September 2011, Sharsheret received a three-year grant from the Centers for Disease Control and Prevention to develop a comprehensive survivorship program for young Jewish breast cancer survivors like Joanne.  Three years later, after distributing more than 1,300 survivorship kits, conducting nearly 750 care plan navigation sessions, and hosting 5 national teleconferences, Sharsheret’s survivorship program, Thriving Again, is doing just that – thriving.

Throughout the process of developing and implementing Thriving Again, Sharsheret conducted a series of evaluations on the needs and concerns of young Jewish breast cancer survivors. Sharsheret clinicians engaged in a comprehensive review of the literature regarding young adult cancer survivors and relevant support programs, surveyed more than 1,400 young breast cancer survivors to better understand their unique and unmet needs, and conducted four national focus groups of breast cancer survivors to collect feedback and identify priority concerns. Sharsheret presented this program development model and findings from the Thriving Again program at healthcare conferences across the country, including the Centers for Disease Control and Prevention Business Meeting and the Academy of Oncology Nurse Navigators Annual Conference, where Sharsheret was presented with an award for our poster presentation in the “Original Research on Survivorship Programs” category. Through sharing our program model and data, Sharsheret advances survivorship care for all groups, and informs the development of new programs for survivors of breast and other cancers.

Looking toward the future, Sharsheret now offers consulting services and co-branding opportunities for healthcare professionals and those at medical centers nationwide who wish to develop similar culturally-relevant support programs for cancer survivors, and continues to provide survivorship kits and navigation services for the women of Sharsheret, like Joanne, who seek survivorship information and support.  

To learn more about Sharsheret’s consulting and co-branding services, contact Support Program Coordinator Sharon Stahl, LMSW or call 866.474.2774.

My Children and Hereditary Breast Cancer or Ovarian Cancer

A diagnosis of ovarian cancer earlier this year was a life changing event.  Fear, anxiety, sadness, body image issues, and short and long term effects of chemotherapy, only begin to touch on the myriad of worries which confronted me.  Still, one of the most difficult things to deal with has been the not-so-surprising presence of a genetic predisposition (due to a BRCA2 mutation) to cancer.   The thought that each of my four young adult children had a 50% chance of inheriting this gene was almost more than I could bear.  

How does one deal with the guilt?  How does one speak with her children about such an inheritance?  Does one inform female and male children at the same time and in the same fashion?  Does one give married and still unmarried children the same details?  Does one advise her children to be tested as soon as possible?  Will a positive BRCA2 test with all its implications interfere with a developing or even presently stable relationship?  Can one avoid adding pressure to the lives of adult children when discussing the issues of marrying early and having babies as quickly as possible so that they may take advantage of risk reduction therapy at a young enough age to reduce the chances of ovarian cancer and breast cancer?

There are no standard answers to any of these questions; indeed the approach will surely differ for each family based on the individuals and the family dynamics.   Several interactions have guided my thinking regarding these issues. 

Firstly, I cannot say enough positive things about resources available through Sharsheret.  Sharsheret’s genetic counselor made herself available to me within a few minutes of my initial call and kept closely in touch.  She pointed out several important concepts to me, including the ideas that: 1) I am not the only source of information for my children; 2) Each individual on the receiving end of the information must decide for him or herself how to proceed; 3) All of the information does not have to be discussed in one sitting– indeed the important thing is to keep the lines of communication open; 4) Difficult as this discussion must be, knowledge is empowering as it allows positive actions to be taken.

Secondly, a wise and spiritual friend focused my attention on the positive implications associated with this difficult discussion, namely: truth, trust, potential for decreasing uncertainty, and potential for risk reduction actions.
Finally, one of my children, aware of the pending issue, asked me straight out about the results of my testing, before I was ready to have the big discussion.  When I made the result known to her and spoke with her about some of my concerns, I was amazed at the strength she imparted to me by her personal views. 

I have yet to work through all the details, but I have gained understanding through learning as much as possible about the implications of the BRCA gene mutation, and through speaking with wise and trusted professionals and friends.

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!