Our Voices: A Blog by Links, Callers and Volunteers

Benefitting from Benefits

Shanna Lehmann Wolf is a financial representative at Creative Financial Solutions, a full service financial planning firm in Fairfield, New Jersey.  She helps individuals and families analyze their employee benefits to coordinate them with their personal needs and circumstances.

Each year, there is one chance to make a benefit election that will affect your costs and medical care for the entire year. Particularly when dealing with a recent diagnosis or a treatment plan, planning is important for the year ahead.  Open enrollment is your annual opportunity to choose health and insurance benefits that reflect what is going on in your family’s life and what you may anticipate for 2017.

The first element to analyze is how you (and your family) have utilized your medical plan and insurance options during 2016.  Then consider what changes have happened over 2016 or you foresee in 2017 that will affect your needs and therefore, elections. During open enrollment, there may be opportunities to purchase life or disability insurance at work.  The enormous advantage to this is you are being considered as part of a group so that your individual health history or status is not analyzed, and you are able to take advantage of group underwriting. This could be a prime opportunity to secure insurance coverage that individually would otherwise be challenging or unaffordable for you to obtain.

The cost of participating in a group benefit is usually favorable to the dollars it would cost for you to obtain a benefit individually. Be sure to analyze the array of benefits available to you so you can maximize on your coverage most efficiently and economically.  As someone facing a cancer diagnosis, it is helpful to have a discussion with a professional who can educate you on your options.

A New Kind of Family Portrait

For many families, Thanksgiving is a time to gather together to appreciate the good things that have happened over the course of the year.  Multiple generations join to share their favorite foods, watch the Thanksgiving parade, or enjoy a football game.  In addition, since 2004, the U.S. Surgeon General has asked Americans to create a new Thanksgiving tradition.  Thanksgiving has been designated as National Family History Day. It is a great opportunity for families that are assembled for dinner to discuss their medical history as a group.

Family history is a very important part of genetic screening or testing.  Knowing about the conditions that affected previous generations can provide information about risks for the current generation.  Knowledge about family history enables individuals to take steps leading to early detection or even prevention of diseases that affected our parents and grandparents.  It is important to discuss conditions like heart disease, strokes, diabetes, osteoporosis, arthritis, Alzheimer’s and cancer. 

What are the red flags to alert us to the need for cancer genetic testing in a family? The first thing we look for is cancer at unusually young ages.  Anyone with breast cancer at age 45 or younger meets guidelines for testing.  The second thing is rare cancers.  Ovarian cancer and male breast cancer are rare; anyone diagnosed with these at any age meets guidelines for testing.  The third thing we look for is multiple cases of the same or related cancers.  A family meets guidelines for testing if there are three or more people on the same side of the family with breast cancer, regardless of age of onset. Finally, ancestry is important.  Any Ashkenazi Jewish woman with breast or pancreatic cancer meets guidelines for testing.

While discussing family history is important, it is not unusual for family members to be secretive about their medical conditions.  They may feel partly responsible for what has happened to them. They may be afraid of being subjected to unsolicited advice about how to manage their illness. They may not want to burden other family members with upsetting news. 

What is the best way to open up communication about family history?  In many families, it may be easy enough to bring up the topic while everyone sits around the Thanksgiving table.  However, a more gradual approach may be necessary if affected family members are resistant to sharing information.  A more private encounter may be more effective.  It is important to emphasize how the information about family history can be helpful, avoiding any comments that can be perceived as blame.  No one can be considered “at fault” for passing on an inherited mutation.

So, this Thanksgiving, reach out to your family members to find out about any cancer history in previous generations.  Educate your family about what you discover. And, finally, speak with your doctor or genetic counselor about your concerns.  You are not alone. If you are considering genetic counseling or testing, call Sharsheret and speak privately with our genetic counselor and our clinical team at no cost to you or your family.  We can schedule a family conference call, to help you facilitate the genetics conversation with your family and answer critical questions.  Together, we will help you understand the genetic testing process and assist you in making informed decisions.

What You Should Look For When Hiring a Trainer After Breast Cancer

Many of us know that exercise is important after undergoing breast cancer surgery and treatment, but there are still many questions that linger. If you are thinking of hiring a personal trainer, what are the important considerations? What questions should you ask a potential trainer? Here are some suggestions.

  1. Do you have any type of fitness certification? Trainers are not licensed, so make sure that they minimally have a certification from one of the industry leaders including ACE or ACSM.
  2. Have you taken any courses on cancer fitness or do you have any specialty certifications such as the ACSM Cancer Exercise Trainer? They should have education in cancer and the implications of cancer treatment on mind, body and spirit.
  3. What type of experience do they have with cancer survivors? Have they worked with clients with breast cancer? Ideally, they should be educated and know how to proceed with clients who may have lymphedema, fatigue, weight gain, peripheral neuropathy, breast reconstruction, and Chemotherapy Related Cognitive Dysfunction or chemo-brain.
  4. If working in your home, do they have liability insurance?
  5. What will your initial assessment include? A thorough assessment is often comprised of flexibility, strength, balance, and cardiovascular status.
  6. Do you require a doctor’s clearance for exercise and are any special precautions advised?
  7. Do they ask about the type and timing of surgery, treatment and breast reconstruction that were performed and if you have any other medical conditions? This will determine when to start strength training to the affected arm and core as well as cardiovascular conditioning recommendations. Knowing about other conditions may necessitate modifications in your program.
  8. Do they recommend a DEXA? If you have undergone chemotherapy or are on aromatase inhibitors you are at risk for osteoporosis. A baseline should be performed to know what types of exercises are appropriate.
  9. What type of exercise do they include in their program? A good program should include a warm up, flexibility training, strength training, and cardiovascular recommendations within your capabilities and goals.
  10. If you have lymphedema, make sure that you consult with your lymphedema specialist to see if you should wear a sleeve and glove while exercising.

Moishe House of Thousand Oaks Goes Pink for the Day

As a Moishe House resident, I am required to host community service events with community members.  In the past few years I have lost friends to cancer, most recently I lost a friend within six months of her Ovarian Cancer diagnosis.  Since October is Breast Cancer Awareness Month, I wanted to raise awareness about breast cancer and ovarian cancer, and to teach people the steps they can take to understand their own genetic risks.  My Moishe House Regional Director put me in contact with Sharsheret. Jenna Fields, Sharsheret’s Los Angeles Regional Director, went above and beyond to help me create a fun, interactive educational experience.  She also talked with me about how Sharsheret can support me after the loss of my friend. 

Jenna sent me a box of materials including pamphlets, posters and giveaways.  At our Sharsheret Moishe House event, we decorated Halloween Pumpkins pink to show support. I educated participants about breast and ovarian cancer in the Jewish community, and handed out the giveaways as prizes.  From this experience I learned that Sharsheret is a wonderful organization to which I will refer anyone who is at risk or who has been diagnosed with breast or ovarian cancer, and people who want to learn more about ways that they can protect their own health and help others. I hope everyone at our Moishe House event walked away knowing that Sharsheret is ready and eager to be a source of information and support.

The Little, Lucky Things

This blog is excerpted from Leslie’s Dvar Torah (speech) at a Sharsheret Pink Shabbat in Raleigh, NC

For those who may not know, just over a year ago I received my first diagnosis of breast cancer.  They found something in my annual mammogram – the size of a grain of rice that although caught early, needed to be removed.  Subsequent testing via MRI found a second cancer, a much larger mass in the other breast. This one wasn’t small and wasn’t caught early at all. 

So, on September 22nd of last year, which was Erev Yom Kippur, I had a double-mastectomy.  The next day - Yom Kippur, I found out I had two different kinds of cancer. The first measured over 2 cm and was Stage 2. It was an invasive cancer, highly aggressive and had a strong pattern of recurring. The other tumor wasn't invasive yet, but was already measuring 9 cm. I found out on Yom Kippur that I would need a year of chemotherapy – 17 rounds.

In this week's parsha (Torah Portion), called Ha’Azinu , Moshe begins by describing the presence of God in nature as being as evident as the rain or dew that nourishes the fields and gardens. God is entirely just, always good, always compassionate and forgiving. 

I read this and wondered how can a God that is always just and good allow any of this to happen? Was it because I didn’t believe in God strongly enough? Did I do something to cause this to myself?  Why me?  Why did this happen?  How can I reconcile a God that is “always good” with my present position?  I can’t say I know that I have the answers to these questions, but today I’d like to share the little rays of light that made it possible for me to make it through some of the dark times I've had this year.

After the initial surgery, I had another surgery to place a port to get ready for chemo. My chemotherapy started in October, and with that, I had all of the side effects you might expect, and then some.  Every chance my body had, it chose to take the more rare path. I had/have side effects that tend to affect only 5-10% of people, and I even had allergic reactions to the chemotherapy itself.  Nothing was "simple". Most people have 5 to 7 days of “ick” with each chemo cycle, I had 18 days of symptoms in each 21 day cycle. When I transitioned from traditional chemo to a newer antibody treatment – from which most women have no side effects – I still had "ick" for 5 to 7 days each cycle. When I do something, I really go all the way!

I was recently struck by something my son, who just turned 8, said to me. He said that this had been his best year ever. Similarly, someone recently asked me to reflect upon this year as my own birthday approached last month, and I replied that while this had certainly been the most hellacious year of my life, it was also a year where I think there were some of the best parts of my life.  I responded to the question, but yet when I heard myself respond, it seemed odd to have come from me.

How is it possible that this was my reaction given what I just went through – and am still going through? 

One of my friends, Tammi, (who had her own battle with breast cancer years ago, and spends time volunteering as a Sharsheret Mentor for newly diagnosed patients) said to me, "You're about to go through this big, dark, scary forest. You can't go around it or over it - the only way to deal with it is to go through it. Your doctors and nurses can provide the light for you to be able to see through it and your husband and friends are there for you to lean on - providing support for you to be able to get through this, but you need to travel through it no matter how big dark and scary it is. When you get to the other side - it's calm and beautiful - and I'll be here for you.” That analogy carried me through the hardest times.

I've used her analogy to try and look for the light amidst the dark and scary at each step of the way.

So - the radiologist who found my cancer told me she could have given a clear pass on the scan, and almost did, but something was just bugging her about it, and she really wanted to have me check it out.  Lucky.

I’m not only lucky that it was found, but that it was found early enough that it hadn’t yet spread to my lymph nodes. What that radiologist found turned out to be the second most aggressive form of breast cancer. And yet, if I hadn’t had this invasive cancer, my doctor would not have requested the MRI that in turn found my second cancer - the one that turned out to be 9cm.  You could say it was lucky I had the invasive and aggressive tumor at all - so that the other larger tumor could be found before it also became invasive.

I remember sitting in the hospital after my mastectomy; I wasn’t even in a room. I never got a room due to an insurance screw-up. Instead, I was in a recovery bay with a curtain (and I got sent home 11 hours after surgery).  I remember sitting there thinking how lucky I was that I had insurance.  Not everyone has insurance, and not everyone can afford to pay extra out of pocket for a 3D mammogram - the 3D directly resulted in my cancer being found. The radiologist told me that's what saved my life.

I’m lucky that there is a treatment today that has taken my type of cancer from being the second most deadly, to having good survivability rates. Just 10 years ago I would have been in an extremely perilous situation.

Earlier today, I benched (prayed) Gomel, our traditional prayer for someone who has come through a dangerous time.  My friend, Rabbi Robert Scheinberg, who was our Rabbi in Hoboken, NJ, writes that our tradition requires us to say this prayer in the presence of the community to acknowledge the support that is essential to weathering the most dangerous and frightening parts of our lives.  As well, our tradition teaches us that life involves mutuality.  Sometimes we are the givers, but we must equally know how to accept help.

Our Rabbi in Raleigh, NC, Eric Solomon, spoke on Yom Kippur about how in our Jewish community – in any Jewish community – it’s important to just show up.  It’s what Jews do.  We’re a community.  We are a community religion.  We need a minyan – quorum of 10 people - present to say many of our prayers.  We show up. You don’t even necessarily show up because you know the person, you just show up.

And show up you did.  I remember thinking – and I continue to believe - that I was one of the lucky ones because I have so many friends who jumped in to help.  I had SO MANY MORE friends than I knew! For 7 months I didn’t get out of bed.  From the beginning, and continuing through today, so many friends have rushed to help by making meals, checking on me, driving the kids. I always knew someone had our kids – I just didn’t always know who.

They say breast cancer puts you in a sisterhood you never wanted to be part of.  I feel so lucky and thankful for the women who came before me, who mentored and guided me, who made the journey easier.

I am thankful for organizations such as Sharsheret, an organization specifically focused on young, Jewish women battling breast and ovarian cancer, who understand the needs of someone like myself, who was diagnosed 20 years earlier than the average breast cancer patient, who had to get through the physical and emotional needs of diagnosis and treatment, while simultaneously helping my children with homework, science projects, attending parent-teacher conferences, and making sure the emotional needs of my children were being met in addition to my own.

I don’t want to say that what I’ve taken away from this year is that every cloud has a silver lining or that things happen for a reason (and I certainly still have my "It's not fair" moments). But realizing that it could always have been worse is what got me through.  I have a friend who had a port infection and was in the hospital for 3 months, other friends are battling breast cancer without insurance, and I have friends who were diagnosed at much later stages. 

That is what makes it possible for me to go through this without being paralyzed with fear all the time – realizing that I am one of the lucky ones. Being grateful for what I have instead of bitter about what I don't.

Even though my initial treatment might be over, I'm not done yet.  I've got some serious fatigue to deal with and some other lingering side effects. I’ll be taking hormone blocking medications for the next 5 to 10 years, and I still have a few additional surgical procedures coming up. I’m rebuilding my relationships with my friends, some of whom I haven't seen or been in their lives for a year, and also rebuilding relationships with my husband and children - seeing how they’ve grown and changed in the past year while I watched most days from bed.  It's not just me absorbing this into my identity, but also seeing who my kids have become, and who I have become, because of our experiences.

I still struggle with my relationship with God.  I’m still struggling with why bad things happen.  I still struggle with “why me – why anyone?”  But answering the why doesn’t make it any easier to get through that big, dark scary forest. It's helpful to put aside the "why" and just focus on what you need to do to get through the current day.

Another wise friend Louise reminded me that at Rosh Hashanah, we read a verse that states “Zeh hayom asah Adonai nagilah venis'mechah bo.  “This is the day that G-d created; we shall rejoice and be glad today.”

So maybe the best way to find God when I question his or her existence, is to make the most of each day (THIS day, each one I am lucky to have) and to look for the little lucky things that make it possible to get through whatever darkness exists on any given day, whether it's a big dark scary forest, or a small one.

As we are about to celebrate Sukkot, I wanted to offer my own wish for all of us. I hope that as we look up from our Sukkahs, we can each find twinkling stars in the dark sky, and that they will remind us to always look for the little, lucky things, the little points of light amongst the darkness, to help guide us through our lives. .

Finding a Way

Navigating hereditary breast and ovarian cancer is not always easy.  Sharsheret simply makes it a little less difficult to face our decisions  and to travel the path that we have chosen. That’s why I’ve chosen to get involved and become a peer supporter, to try and make things easier for those who will inevitably face these decisions next.

I am what is called a previvor. Cancer previvors are individuals who are survivors of a predisposition to cancer but who have not actually had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor.  I am positive for the BRCA2 mutation.

I tested positive for the BRCA2 mutation about eight years ago. I had delayed being tested for a few years after my mother passed away. Though it was ovarian cancer she eventually succumbed to, when she was first diagnosed in 1990, it was breast cancer. Around the age of 30, I knew I couldn’t put off the test any longer. It’s not like I didn’t already know what the results would be. Earlier this year, I underwent a bilateral prophylactic mastectomy with expanders. It was my Sharsheret Peer Supporter who helped get me through the months that followed. With these procedures, it’s hard to find people who know exactly what you’re going through. Often times, though they mean well, family and friends say the wrong thing. My Sharsheret Peer Supporter, Lauren, never said the wrong thing.

I am now three months out of my exchange surgery. I know that I will have to remove my ovaries in the next few years, but for now, I am grateful that I was able to have the procedure, that it was covered by my insurance, that there were no signs of cancer or pre-cancer in the pathology and that there was someone there to walk me through it all. I have learned to focus on the positive. The decisions are never easy; they never will be. But with Sharsheret, there will always be someone to guide you through the process.

Hope, Strength, and Positive Thinking

There has been a lot going on at once for my family, with my mother's diagnosis coming so soon after my diagnosis and first surgery, and our treatments overlapping time wise. Throughout this time, Sharsheret has been such an incredibly important part of my journey; always providing so much grounding, loving, supportive kindness. I cannot imagine what this past year from diagnosis through today would have been like without Sharsheret. It is incredibly comforting to know that I have a contact at Sharsheret who "knows me" and my story.

My first surgery took place on February 2nd, and my second surgery happened not so long ago, on July 11th. My daughter began camp the Monday before and I was happy that we had two weeks to get her acquainted with her day camp routine before I had my next reconstruction procedure. Before my procedure, I was mentally preparing for this next step. Trying to stay very optimistic about this procedure being much less intense, with an easier and faster healing process.

My mother, who was diagnosed with breast cancer just a few months after me, also began the next phase of her treatment about two weeks after my surgery. She was scheduled to begin her radiation therapy at the end of July, once my drains were out, and I could be back in the swing of things for the most part, without the extra help of my parents. Something I love about the photo in this blog is it shows the close connection between two women, both who received diagnoses where we were given the same choices for our surgical treatment. I chose one path for my reasons at 40 years old and my mother chose the other surgery and treatment for her reasons as a 66 year old woman. Never once did either of us second guess or question the others’ choice, we went different directions, and respected each other with the same non-judgmental support and compassion one experiences when they contact Sharsheret and speak with the social workers and peer supporters.

We both feel fortunate as the recovery process could certainly be much more difficult and complicated for both me and my mother. When I am feeling overwhelmed, I find it is helpful to take that step back and think about the breast cancer community as a whole. This step back provides so much perspective when I realize we are not alone. I always feel inspired and in awe reflecting on the stories of so many women who are also bravely fighting their cancer. So many of whom have to endure significantly greater treatment therapies and sacrifices requiring enormous strength and courage. This helps remind me that my mother and I will get through this challenging time as well. 

Being connected to Sharsheret means a great deal to me. Having a direct connection to a larger group of women who are battling breast cancer provides me with so much hope, strength and positive thinking.

Sugar Coating the Holidays

From the time we are little, we look forward to dipping the apple in the honey on Rosh Hashanah. Why an apple? There are several sources that suggest that over the course of Jewish history the apple represented the tenacity of Jewish spirit and determination. And the honey? Honey is the symbolism of our desire for a sweet New Year. Sweet meaning precious, enjoyable, peaceful, and protected. The combination of the apple and the honey makes for quite a meaningful tradition… most of the time.

For those of you who are facing challenges and adversity, connecting with tenacity and determination, particularly around the holidays, may be difficult. No manner of sugar coating, or in this case, honey coating your experience feels attainable. Having to shop and prepare meals for the holiday may be overwhelming, and the thought of having to delegate is another reminder of the impact of cancer. Sitting in synagogue reading the prayer “Who shall live and who shall die?” is a trigger for many of you who are living with and surviving a cancer diagnosis. Putting on a happy face when surrounded by friends and family when you are feeling fatigue, stress, and fear takes a lot of energy.

Perhaps this is the time to reframe this tradition, to not only see this practice for what you want for the New Year, but rather as a reminder of everything you hold precious, enjoyable, serene, and secure that cancer and treatment can never touch. As one Sharsheret caller shared, “Even though I can’t keep cancer from invading my body, one thing I have come to realize is this: Cancer can’t touch my soul.”  Your strength and resolve are tested beyond any limits you thought you had, and then beyond that. Allow both tears and laughter to flow equally and freely, as they both have the potential to cleanse and renew your spirit and determination.

Wishing you all a sweet and healthy New Year.

From Fear to Freedom: Sharing my journey as a BRCA carrier

From the moment I found out I was a BRCA gene carrier I felt an overwhelming need for information and to connect with others in similar situations. I was in my twenties, about to get married, and I needed to know more. Thankfully, I was told about Sharsheret. They gave me the help that I needed, combined with medical and family support, to make the decision to undergo biannual testing to stay 'one step ahead'. As time went on, having undergone numerous biopsies and wanting to focus on growing my family, I had begun living a life consumed by fear. I decided to do what I hadn't imagined I would ever consider, I underwent a prophylactic double mastectomy. I chose a dream team of doctors (after being shocked by the insensitivity of various medical professionals) and with the support of Sharsheret, I began this next journey. I maintained my privacy throughout that period of time, not putting my story out there for all to hear and weigh in on. However, I have now come to feel a sense of pride, relief and confidence in my decision and the journey I went on as an individual, a young wife, and mother. The more I shared the more people opened up and I realized the importance of paying it forward. Everyone's journey is different, but feeling like you are standing tall on love, support and generosity of spirit, I believe, is the best way to move forward, stay focused, and heal.

To view Liora’s film “From Fear to Freedom” visit http://www.docyourstory.com/portfolio_page/liora/
To view the trailer of Liora’s film “From Fear to Freedom” visit https://vimeo.com/154630179

Liora’s video, “From Fear to Freedom” was produced by docyourstory.

How I Got it Before it Got Me

My mother was a carrier of the BRCA gene mutation and was diagnosed with breast cancer at the age of 32.  After my mom had died at the age of 51, I knew that there was a possibility that I was carrying the deleterious BRCA gene mutation too.  When the doctor called to give me results, I was not surprised but disappointed that I had not somehow avoided this fate.

I encountered the Sharsheret website while searching for information about my BRCA positive diagnosis. I knew that I wanted to find out everything possible about the gene mutation, its risks, probability factors, and prevention treatments. I am grateful to the people at Sharsheret for giving those facing breast cancer a central place to get information, support and reassurance.

After researching I felt like I was a breast cancer patient waiting to happen.  I wanted to take control of an aspect of the illness that was controllable and do anything possible to significantly lower my risk.

I am forever grateful to a colleague of mine for sharing her preventive prophylactic surgery experience with me that she underwent a year before. With her support, I was able to face my personal journey with complete confidence and minimal trepidation. I was lucky that my previvor friend recommended an awesome team that was able to do a nipple sparing prophylactic double mastectomy with reconstruction in one surgery.  I was back on my feet and back to work 2 weeks later.

I believe that every person who has chosen to have a mastectomy before her diagnosis is another person that modern science with its awesomeness was able to help.  The goal is that it saves us the chemotherapy, anxiety, fears... I know those side effects all too well.  I watched my mom suffer from them from when I was 12 years old.

My mom was my best friend on earth.   She taught me to be proactive, to take the reins in every situation and to stand up for something when you believe in it.  I believe that she would be so proud and so grateful that I did this surgery.  I want to encourage others to seize the moment and not allow fear to stand in the way of making healthy decisions that fit their unique set of circumstances.