Our New Vision and Mission

2012JeanSachsHeadshotVer2Web

This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

Julie Clark: Living Is What We Strive For…You Are The Best Medicine

Today the LBBC blog would like to reintroduce Julie Clark, one of the women featured in the Faces of Metastatic Breast Cancer video. Julie is the author of a new children’s book, You Are the Best Medicine, providing an inspiring and heartfelt story about honestly sharing your breast cancer journey with your children. Here she offers our readers her moving words in two ways: for you and for the children.

beyond – n. something that lies farther ahead

I think about the words living beyond breast cancer, and I wonder if I am. Living beyond. The implication of those words is that it’s no longer with me – that I’ve left it behind. I envision a long-distance runner on a dry, dusty track, sprinting ahead of the others and leaving only tread marks on the path. In some ways I am that runner. Although diagnosed with stage 4 breast cancer in 2008, I am told that there is no longer any evidence of disease in my body. And for that, every day, I am grateful.

But some events in life stay with us always, like it or not.  We do not move beyond being mothers, for example; we do not leave behind the sadness of the death of a loved one. Nor do we want to. Memory makes our lives textured and rich. And much as I have learned to live with the endurance of the long-distance cancer survivor, much as I want to move beyond this beast’s ugly and awful reality, the trick of cancer is its insidious voice whispering “Here I am” and its ability to keep up.

Were you a fighter before you heard the words, “You have cancer”? I didn’t know I was. But the instinct I felt when my daughters were born – that survival/teeth bared/depth of love/kill or be killed instinct – kicked in when I was faced with a disease that could rob me of my family, and I fought back.

Julie Clark is the author of
“You Are The Best Medicine”

I still fight back in a number of ways, every day. Once I learned the disease had left my body, I took exercise a lot more seriously. I ate lots of green things that I hadn’t tasted before, swallowed pills as round and dry as buttons, and gave myself permission to slow down – to breathe.

How can I find the strength to move ahead? I see my family cheering me on, their flags waving and their hands clapping. I look in my daughters’ eyes and I feel they have coached me for this, this powerful strength that blossoms from their hearts and surrounds me with a feeling of triumph. And, I realize, that this is what it means to move beyond. But even more important is the first word in the phrase living beyond breast cancer. It is that which we strive for – that beautiful adjective.

Living – adj. active or thriving; vigorous; strong

A page from “You Are The Best Medicine”

For a child, watching a loved one go through cancer treatment is scary. In this courageous and sensitive book, Julie Clark creates sweet and poignant memories that remind children how important their support is during a time when optimism and love are most needed.


For more information or to order Julie Clark’s book, You Are The Best Medicine, visit the website , “Like” it on Facebook or check it out on Amazon.com.

Tomorrow is another day…

This entry was written by Donna Helmes, a participant of the 2011 Fall Writing Series:

When I was a young girl, my father took me to see an afternoon showing of the movie, Gone With the Wind.   Just one look at the beautiful, larger-than-life Scarlett O’Hara and I was hooked.  I took many things about the story to heart, including Ms. O’Hara’s belief that “tomorrow is another day,” –  and, that there is always time to deal with things in the future. 

In my own life, I had put off a personal life to pursue my career. What about a serious relationship? A relaxing vacation? Having a family of my own?  Well, after all, tomorrow is another day…

Then in 2008, during a routine mammogram, an eagle-eyed radiologist discovered a mass.  After a diagnosis of breast cancer (invasive ductal carcinoma), a bilateral mastectomy and 4 rounds of chemotherapy soon followed. As I recovered from treatment, I was filled with regret over missed opportunities; I grieved for things I believed that I would never have. My heart broke at the realization that I would probably never have a child of my own.  I no longer believed in tomorrow.  I thought my life was over before it ever really had begun. 

I hated having breast cancer. Period.  I do not want any woman to have to face this diagnosis, nor do I want my cancer to return.  It was hard to go through treatment and to live with its aftereffects.  Yet, a funny thing happened on my journey through Cancer Town.  I stopped mourning my tomorrows and began to live for today.

I wanted to live my dreams. Most cancer patients have fantasies about climbing Mt. Everest or…running with the bulls in Pamplona. Me?  I didn’t think I needed a big life to have a great one. I started digging in my garden and discovered that I absolutely love flowers.  I bought a small house near the river with a wonderful area for roses and a vegetable patch. I took long walks and cut back on my hours at work.  I borrowed books from the local library and sipped wine at lunch with friends. 

I took a deep breath and signed up for a poetry writing class with Alysa Cummings through Living Beyond Breast Cancer. The idea of participating terrified me; therefore, I knew that it was the right thing to do.  I had never written poetry, though I had kept a journal for many years.  Interestingly, once diagnosed with cancer, I found I could no longer write a word.  At first, I attributed this to “chemo-brain,” but my writer’s block continued long after my treatment ended.  I realized that I was afraid to write. Scared to express how I felt, scared to release all those complicated emotions – anger, fear, resentment, uncertainty – that go along with having a diagnosis of breast cancer.  I feared becoming overwhelmed by them. 

Luckily, rather than being overwhelmed, I felt lighter and empowered by the class.  It provided me with a safe space to process my experience and I learned what being a breast cancer survivor means to me.  I found myself writing once again.  At night I would pop open my journal, excited to fill the blank pages. 

After treatment, and with the promise of a very good prognosis still ringing in my ears, I contacted the Social Services Adoption Division. Nine months to the day, they placed my daughter in my arms.  This summer, she and I chased butterflies and ate cherry tomatoes from our garden.  We celebrated the holidays and together we rang in 2012.

Meet Bella…

I have to say this was my best New Year yet and, though I am looking forward to 2012, I am enjoying living for today.

There will be a Spring Writing Series beginning in mid-March. Be sure to visit LBBC.org for more information.  This 2012, how will you define your breast cancer diagnosis and channel the devastation of your breast cancer into an outlet of positivity?

Your Fashion Bug of the week

Alice Budno Hope is one of five vibrant and strong women selected to represent Living Beyond Breast Cancer during Fashion Bug’s Breast Cancer Awareness Month Campaign.  Throughout October the women’s clothing store, with nearly 700 stores across the United States, will support LBBC by donating 100% of proceeds from the sale of a one-of-a-kind inspirational tee and by asking their shoppers to make a contribution by rounding up their purchase to the next whole dollar.

For women who have been diagnosed with breast cancer, October is often a month filled with emotion. While every woman expresses their approach to the month differently, Alice reminds us of what enticed her sense of taste. The taste of fear came lurking after Alice’s breast cancer diagnosis.

I am honored and humbled to be one of the five women chosen for Fashion Bug’s Breast Cancer awareness campaign to support Living Beyond Breast Cancer.  The experience has introduced me to so many fabulous people and allowed me to be featured on a billboard in Times Square!  Can’t beat that!

The idea of the five senses became an alluring theme. Each of us have a breast cancer story, of course. But from person to person, our story is a reflection of one ideal sense that created the most appealing significance in our individual journeys. For me, it was my ability to taste.

Prior to my diagnoses in May of 2006 I was tasting… a lot…of food!  I was 31 years old and 28 weeks pregnant with my son, Hunter.  I had just lost my Dad a few weeks prior to my diagnosis.  My taste for life was just rebounding a bit and then – BAM!  How could this happen?  What would happen to my baby?  It was all a swirl of madness and a week after my diagnosis I was operated on…on my birthday. 

When I returned from the OR and a white box was delivered.   I opened the box to discover the hospital had sent me a birthday cake.  I certainly did not have a taste for my birthday that year.  I recovered nicely, enjoying the tastes of all of the foods that were steaming into my home, donated by people I barely knew, who have since become my closest friends.  Maybe I could regain my taste…through the help of others.

Two months after surgery my mouth would again water, thanks to the delightful smell of my blessed son, Hunter Louis, born happy, healthy, and on time.  His first taste in life was breast milk – ironic thought my Doctors.  They said I would not be able to sustain him on half power!  How wrong they were!  My beautiful son nursed for five months, on my terms! 

For the next several months I had a taste of fear.  A fear of recurrence.  I made the decision to have a prophylactic second mastectomy, on my terms.  I lost the taste for fear.  I had no time for cancer in my life.

And here I am, 5+ years later.  I have a zesty taste for life.  I love to educate young women about breast cancer.  One of the main things that I aimed to show through my participation in the Fashion Bug Photo Shoot was: “your life can go on after a cancer diagnosis.” 

I have tasted my children’s birthday cakes, my friends’ wedding cakes, wonderful dinners with my husband, and lots of wine with my mom, and so much more.  I look forward to tasting the graduation cakes of my children, their wedding cakes, my husband’s retirement cake and my 80th birthday cake…at minimum!

Throughout Breast Cancer Awareness Month, Fashion Bug stores will donate 100 percent of proceeds from the sale of an Inspirational Screen Tee to support our educational resource Guide for the Newly Diagnosed and LBBC’s Survivors’ Helpline, a personalized matching service that connects women in similar circumstances in a confidential setting.

You can order online or find a store nearest to you!

No Pink Ribbons Required

This entry was submitted by MJ DeCoteau, executive director and founder of Rethink Breast Cancer:

Most of us in our 20s and 30s are far too busy building a life, a home, a family, a career to think about breast cancer. And when it does strike a young woman, it’s a complete and utter shock. Rethink Breast Cancer was created by young women for young women. We’re working hard, creating savvy support, awareness, education and research programs that speak to the unique needs of young (or youngish) women busy balancing full lives.

I was just 18 years old when my mother was diagnosed with breast cancer and 22 when she died. My grandmother also had breast cancer so I felt like a bit of a ticking time bomb. When would I get it too? I picked up breast self-exam pamphlets at my doctor’s office, but they all featured a senior citizen on the cover and were very medical looking, even a bit scary. I remember one featured a water-color illustration of the naked back of a woman turned into a dark, shadowy corner to check her breasts. I opened it up and it was a three page fold-out of tiny black type—a thesis dissertation on how to check your breasts! Needless to say, I tucked it in a drawer and eventually chucked it out.

These drab brochures weren’t inspiring me so how would they motivate my friends and other young women who didn’t even have a family connection to breast cancer? Another challenge: I wanted to raise funds to fight breast cancer but pink ribbons, angel pins and traditional galas and golf tournaments weren’t for me. I saw the need for a breast cancer organization that was relevant to my generation.

In March 2001, with the help of an incredible group of passionate, energetic and creative people, Rethink Breast Cancer was born. Our mission: to help young women (and men!) concerned about and affected by breast cancer.  I was really inspired by the AIDS movement of the early 90s—with its bold, in-your-face messaging and hip and cool fundraising events. Why did breast cancer always have to be wrapped in a pretty (sometimes even tacky) pink ribbon?

By working with the fashion, music and design industries, we aimed to tackle the serious issues of breast cancer in a bold, creative, upbeat way. Today, Rethink Breast Cancer has a roster of events and initiatives, everything from Boobyball to Breast Fest, the world’s first breast cancer related film festival.

What’s also exciting, Rethink Breast Cancer has evolved from an awareness movement and funding cutting edge breast cancer research to also providing much needed emotional and practical support for young breast cancer patients.

Young women with breast cancer can face unique challenges—delayed diagnosis, aggressive treatment, fertility, child care and financial obstacles. Yes, the numbers of young women diagnosed each year are a small percentage of the total number of breast cancer cases. But, the needs are very real and Rethink is all about filling the gaps. We see ourselves as specialists. The message we send to the women we serve: We act your age! Often it’s the small details that make a difference. We’ve taken support out of the hospital setting and have tried to create support environments that have a young woman in mind—sunny lofts, cool retail spaces etc.

Over the years, and with incredible help from partners and volunteers, we’ve been increasing the number of support programs we offer to young women.

When I think back on how Rethink began almost ten years ago, I realize how far we’ve come. But we still have a long way to go. The explosion of Social Media spaces has made it easier than ever for people to share their stories, have their voices heard and be a part of an on-line community. We are very busy right now revamping our website, blog and Facebook fan page. It’s all about staying relevant and current, right?

Rethink started from my own personal experience but  it’s the hundreds of young women that have gotten involved that are driving our organization. It’s their stories that are shaping Rethink’s future. Please share yours with us at rethinkbreastcancer.com

In essence of graduation season, LBBC is highlighting young women and students who are in some way affected by breast cancer. Could you benefit from programs that are dedicated to young breast cancer survivors? Are you a young woman who is a loved one of someone affected by breast cancer? Share your thoughts on our facebook page.

The Will to Live

This entry was written by one of our volunteers:

Back in 2003, when I was diagnosed with breast cancer, I was 31 years old and 34 weeks pregnant.  It was an absolute shock because I wasn’t aware of any history in my family.  I would come to learn that my great-grandmother on my father’s side was diagnosed but she was treated and went on to live a nice, long life. 

For three years after my successful treatment, I was a happy mother of a healthy little girl and looking to put cancer behind me.  That all changed in the fall of 2006 when my mother and sister were diagnosed with breast cancer within three months of each other.  Whereas in the past I had blown off genetic testing, I now recognized my family’s need to get genetic testing.   

Why get tested? 

The stakes were high. I have a little girl and my sister has two little girls. Carriers of the BRCA1 gene not only have high incidents of breast cancer, but ovarian cancer as well.  When my results came back positive part, of me was relieved. Now I knew why I got cancer in the first place.  But mostly, I was sad.  I met with a genetic counselor and we went through the testing process and possible repercussions with a fine-toothed comb.  My choice was to either carry on with my life while getting tested every six months or get a double mastectomy.  And because of the ovarian cancer risk, an oophorectomy (removal of the ovaries) was also on the table. 

I was so frustrated. I had completed my “cancer time” and I was trying so hard to move forward with my life.  I couldn’t get tested every six months.  It was hard enough thinking every ache and pain was a recurrence. Getting tested every six months would make me go insane with worry.  The removal of body parts seemed barbaric and incredibly invasive.  No more breasts?  No more ovaries?  It would be difficult to go ahead and relinquish the parts of my body I felt were essential to my womanhood. 

But in the end, what matters most is life.  I want to grow old with my husband and watch our children grow to be happy, healthy adults.  So in 2007, I had an oophorectomy and a double mastectomy with reconstruction.  In the end I am grateful that we have tests available to find out if one is a gene carrier.  Despite the fact I was given “choices,” when the test came back positive for the BRCA1 gene, I felt there was really no other choice than to have the surgeries. 

I want to live.  What good are your boobs and eggs if you aren’t living? 

Because of the testing I not only saved my own life, but also the lives of daughters, cousins, and nieces in the next generation.  I may not have all my physical parts anymore, but my heart is still there…beating loud and clear.

Did you decide to get genetic testing? Why/why not? Leave us a comment below or on Facebook letting us know what influenced your decision.

A Blessing in Disguise

This entry was written by Lesley Andrews, a breast cancer survivor and supporter of LBBC:

On August 25, 2003, I awoke groggy and disoriented from an excisional biopsy on my right breast. My husband was in tears. 

“I am so sorry, but it’s breast cancer.” 

I was 38 years old.  I was in total shock and felt that my whole world was caving in.  I was so healthy – how could my body have failed me?  Yet, not only was I forced to face my own mortality, I also had to deal with the possibility of a life without children.  I never dreamt that, not only would I survive cancer treatments, but I would become the mother of three children.  

Encountering Obstacles

In January 2003, after 1 ½ years of trying to carry a baby, I went through in vitro fertilization (“IVF”).  That cycle was successful, and I became pregnant with triplets!  I was excited, thrilled and terrified.  But, sadly, I lost all three at nine weeks into the pregnancy.  After a D&C and waiting for my body to heal for two months, I completed another IVF round.  It failed.  When my fertility nurse told me that my pregnancy test was negative, I called a close friend and said, “I feel like she just told me I had cancer.”  Little did I know, I actually did have cancer growing inside of me.

After many discussions with my husband, we decided to take a month off and try naturally.  I believe that decision helped save my life.  As I often did when I thought I might be pregnant, I felt my breasts during that month to see if they were tender.  That is when I found the lump.  It seemed to have grown overnight.

One Last Try

I had a unilateral mastectomy and axillary dissection in the fall of 2003.  Before I started chemotherapy, I told my oncologist I wanted to go through another IVF cycle.  I knew it was my last chance to create embryos.  Chemotherapy would likely severely damage my remaining eggs, and I was already having a difficult time conceiving.  My oncologist was hesitant due to the possible risks associated with increasing my estrogen during the in vitro cycle.  She suggested I see a specific fertility specialist in New York City who dealt with cancer patients.  Within a week or two, the doctor stimulated my ovaries with fertility medication while giving me a breast cancer drug – an aromatase inhibitor – to reduce the estrogen levels in my blood.  This IVF round resulted in four embryos which were immediately frozen. 

Because I was on Tamoxifen, I could not safely carry a baby due to the high risk of birth defects.  We found an amazing gestational carrier who agreed to carry our baby.  We used the frozen embryos from my first IVF cycle.  After initially starting with twins, one twin died at 8 weeks gestational age.  But Melina continued to grow in our gestational carrier’s womb and was born a healthy baby girl on May 31, 2005.   

Double the  Blessings

When Melina was two years old, my husband and I decided to use the remaining four embryos from the pre-chemo IVF cycle.   The gestational carrier who delivered Melina agreed to try again.  The fertility doctor told us that, due to the type of these embryos, the chance of pregnancy was only about 15 to 20 percent.  We went ahead anyway.  I had a plan B – using an egg donor or adopting. 

I never resorted to plan B. 

Not only did our carrier get pregnant, but she became pregnant with triplets! One of the triplets stopped growing at nine weeks gestational age, but we were so fortunate to have healthy, full-term twins – a boy, Ryan, and girl, Annabel – born on May 16, 2008.   

I still mourn the loss of not being able to carry my own babies.  My whole life I wanted to experience being pregnant.  Despite the loss of never giving birth, I cannot believe how many wonderful blessings have arisen.  I know I am so lucky.  But, sometimes, in the quiet of the night, I panic, thinking I might not be here for my young children.  Then, I listen to my inner wisdom, and know, for sure, that I will. 

Melina, Lesley, Ryan, Manny and Annabel