Archive for the ‘young mothers’ Category

Our New Vision and Mission

August 20, 2013

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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

I Talk To Strangers, You Should Too!

March 28, 2013

randi rentz

Long time LBBC blog contributor, RANDI RENTZ, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington,DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

***

Call me crazy, but I look forward to waiting in line, and just about any opportunity to shoot the breeze with people I don’t know. I’m chummy with the guy who pumps my gas, (the only gas station nearby where they still pump gas for you), still exchange holiday cards with my 4th grade elementary school teacher, and the other day I spent a solid hour gabbing with an 81-year old woman I met at the tailor’s while having my pants hemmed.

I’m now a life-long, die-hard people person. I never used to be, though. In fact, I never enjoyed chatty encounters with people I didn’t know…until cancer. I wasn’t hostile before breast cancer.  Every day I had pleasant exchanges with strangers and acquaintances—an enthusiastic “Morning!” or a friendly “Have a great day!”  Such moments continue to be life-affirming, yet, prior to breast cancer, they were blessedly brief.

On-the-fly updates from people I’ve barely met used to drain me. Seriously.  I always felt obliged to respond with genuine emotion, to pay real attention. I would fake outrage or concern, with a performance that was definitely Oscar worthy. That meant stopping whatever I was doing, and force myself to focus. Since my laser-beam concentration was always sensed by the people stopping me, their details got longer and longer. Oy, vey! I felt trapped like a mouse in a maze.

Did breast cancer make me a people person? Well, I think it made me more aware of the little moments in life that make up the big moments. I now enjoy being a true people person—even though I’m inclined to dislike anyone who describes himself/herself this way. Go figure. I digress, sorry. Anyhoo, hear me out. Lifting your head and engaging with whoever happens to be standing next to you is worth the effort. It’s nice to see people smile and to genuinely smile back. It really feels good and refreshing. You should try it.

For one thing, you never know when you will receive priceless advice.  The 81-year-old cautioned me to get in good with my son’s future wife and to always take the dog out for an evening walk to do “its business.” Little did she know, I have no children and own two cats which use a litter-box. Needless to say, I felt it worthy to file away her words of wisdom. Maybe a stepson and a dog are in my future. Who knows? I digress. Sorry. When I left the fitting room, fiddling with the waistband of my pants, she said, “With posture like that, who needs Spanx? Coming from a stooped octogenarian, her words felt like a wake-up call to enjoy my youthful existence.

I believe my world is bigger with my random encounters. My brushes with strangers bring me the thrill of the unexpected, to glimpse a world I used to brush off and otherwise never see or appreciate. In the frenzy of life, with intense money, work and time pressure, I honestly didn’t have much conversational energy to spare.

Now, I think of it as a habit as “meeting new people,” even if I never see them again. My encounters with strangers bring me back to a place where I long to be. I never had grandparents, because they died before I was born.  But now I cherish chance meetings with people of all ages, especially older people. I find their perspective to be rather eye-opening.

Instead of rolling my eyes, I appreciate the interruption. I am so grateful for the little things in life. I now understand what being a warm person means.

And now, onto the Spanx…

LBBC Introduces New Guide To Understanding Breast Cancer

March 25, 2013

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Living Beyond Breast Cancer (LBBC) has announced the release of Hormonal Therapy, the newest title in this national nonprofit’s library of Guides to Understanding Breast Cancer. It joins nineteen other LBBC publications available in print and electronic formats designed to address the needs of women who have been diagnosed with breast cancer.

 

The guide provides insight and answers about the complexities of hormonal therapy, treatment that reduces estrogen in the body, for women with breast cancer. Hormonal therapy for breast cancer is sometimes referred to as endocrine or anti-estrogen therapy. Breast cancer hormonal therapy can reduce the risk of disease recurrence, prevent new breast cancers and improve survival. Approximately 70% of breast cancers are hormone-sensative¹ and many women are likely to receive hormonal therapy as adjuvant therapy – treatment given after primary therapy.

 

The Guide to Understanding Hormonal Therapy was co-authored by Janine E. Guglielmino, MA, LBBC’s director of publications and strategic initiatives, and medical writer Robin Warshaw.  “At Living Beyond Breast Cancer, we know women face many choices when it’s time to begin treatment for hormone receptor-positive breast cancer,” Guglielmino states. “This guide was developed to help women ask their providers informed questions about how hormonal therapies and their side effects may impact their day-to-day lives.  And since hormonal therapy lasts for many years, the guide aims to address the questions women have today – as well as those that may arise tomorrow – as those concerns may very well change over time.”

 

In addition to Guglielmino and Warshaw, a committee made up of more than a dozen oncology professionals, LBBC staff and women affected by breast cancer reviewed and contributed stories to the sixty-six page guide, which is divided into eight sections and written in clear and easy-to-understand language.  Section topics include hormonal therapy options, common questions about treatment decisions, coping with side effects, what to expect when treatment ends and additional resources.

 

The guide focuses on hormonal therapy for early-stage (ed. note – stage 0-II) or locally advanced (ed. note – stage III) hormone receptor-positive breast cancer. Hormonal therapy is also used to treat recurrent and metastatic (stage IV) hormone positive disease and to prevent first breast cancers in women at high risk for developing breast cancer.

 

“We believe women can play a powerful role in their treatment when they have the resources to help them make informed decisions and be full advocates for their own health,” say LBBC CEO Jean A. Sachs, MSS, MLSP. “In addition to this guide, LBBC has additional resources at lbbc.org.”

 

Free, individual copies of the Guide to Understanding Hormonal Therapy are available online or by calling (610) 645-4567. Larger quantities may be ordered for a small shipping and handling fee.

 

¹National Cancer Institute

“My mom had breast cancer.”

March 1, 2013

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Drew and Courtney Daly and their boys

Courtney Daly was 37 years old when she was diagnosed with stage I invasive breast cancer, which manifested as two tumors in one breast.  In addition, she also learned that she had DCIS in both breasts. It is now one year since her diagnosis.  

Recently, her son Aidan completed a video project for school.  Let’s have him share his story in his own words. 

Hi, my name is Aidan. I made this video for a school project called “Think Care Act”.  For this project you choose a problem you care about and do something to help. Originally I wanted to raise money for LBBC, but then I decided to create a pamphlet and video for kids my age who might be scared if their moms have cancer. I wanted to help them know that there are other kids out there and people know how they feel.

This video tells the story of how my family and I got through my mom having breast cancer. My mom was diagnosed at age 37. She was one of the 10% of women diagnosed with breast cancer who are under age 40. It was really hard at first knowing my mom had breast cancer. But as we talked about the survivors we knew it got a whole lot easier. My parents were very reassuring and that made me feel better. Throughout the spring and summer, my mom had two surgeries, four chemo treatments, and tons of doctors appointments. She tried her best to come to my baseball games and other special events. She is an awesome-sauce mom!

I hope that this video helps many kids my age, and lots of families. If you are gong tough times right now I hope this video helps you.

Jeanette Caligiuri: Triple Negative, Triple Threat

July 2, 2012

On Tuesday, July 10th, Living Beyond Breast Cancer will host a free Community Meeting addressing the diagnosis of triple negative breast cancer.  In preparation for that event, LBBC would like to introduce Jeanette Caligiuri, co-founder of Faith & Hope Boutique and an eloquent triple negative breast cancer survivor.

I am sure we all vividly remember the day that our lives changed forever when our worst fears were confirmed; “I am so sorry…you have breast cancer.” I wish I could say I was stunned or shaken, but what I was feeling was almost relief…

Breast cancer has always been part of my life; it very hard to remember a day that we didn’t coexist. The disease has touched every female family member on my maternal side. I have childhood memories of spending Thursdays at Pennsylvania Hospital in outpatient chemo with my mom who was diagnosed in her late twenties. I often assumed that everyone’s mom was bald and unable to hug too tightly because of her latest “boo-boo.” My mother was taken too soon, barely thirty-five, her mother in her early fifties and the chain continued…to me. To some, my story is sad, but to me it’s empowering. I armed myself with knowledge and preventative care. When the enemy came knocking, I would be prepared. I had an army of three who I felt with me through every surgery, each round of chemo and numerous setbacks. I had the knowledge that I was a BRCA1 mutation carrier—the only puzzling thing about my diagnosis that I was to learn was that my breast cancer was triple negative.

“What does that mean?” I naively asked the surgeon, “Negative is good, right?” I heard myself scream with fear. “Not exactly” are not words of reassurance from your doctor as he went on to explain and rattle off statistics that I was no longer able to comprehend. My focus was on aggressive, poor prognosis, higher mortality and many more awful adjectives.

Upon returning home, I immediately hit the web and researched into the wee hours of the morning. I remember waking the next day paralyzed with fear that I would never see the youngest of my three sons’ graduate elementary school, let alone Start College. I vaguely remember time passing slowly until the following weekend arrived, when I attended my first annual Fall Conference: “News You Can Use” hosted by Living Beyond Breast Cancer. That morning, before the first keynote speaker took to the stage, I was embraced into the sisterhood that spoke to my fears and filled me with resolve. If anyone was meant to be in attendance that day, it was me, as a key focus of the conference was on triple negative breast cancer. I learned so much that day and left with renewed spirit and most importantly, hope.

Now that I am a six-year survivor, I have taken many lessons from this journey: that we don’t get to choose what happens to us in life, but we do get to decide how to use it. My experiences have given me a voice to speak to young women while volunteering for groups like Living Beyond Breast Cancer and Young Survival Coalition. I have been rewarded the gift of purpose by co-founding my survival shops, Faith & Hope Boutique. But the greatest lesson I have learned is that good things come in threes: the legacy of my Grammy, mom and myself. My three sons, who I have watched graduate from elementary and high school. That we all have a past, can live for today and tomorrow is future enough to plan for. That most importantly, a triple negative diagnosis what not my ending, but a new beginning.

For more information about Faith & Hope Boutique, a shop fully staffed by survivors who are ABC and BOC Certified and rely on their own personal post mastectomy experiences to aid in your recovery, visit their website. Also, if you’re interested in learning more about triple negative breast cancer, head over to the LBBC website to order or download the Guide to Understanding: Triple Negative Breast Cancer.

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

May 16, 2012

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.

Pat Biedermann: Living Harmoniously with Stage IV Cancer – PART THREE of a Multi-Series

April 18, 2012

On April 28th and 29th, 2012, Living Beyond Breast Cancer will host its Sixth Annual Conference for Women Living with Metastatic Breast Cancer. In preparation for that event along with our video blog series, we introduced Pat Biedermann, an  LBBC  Helpline volunteer who happens to be living with metastatic breast cancer. In this multi-series, Pat will share with you–not only her story–but her “tricks and tips” on how to live (and live well) with the disease.

Appearance and EgoThis is Pat

I am currently a stage IV breast cancer survivor and have been for 6 ½ years. When I look in the mirror today, I see my lopsided breasts; a scar from hip to hip; a five-inch deep hole in my stomach; no eyebrows or eyelashes. My hair, at one time, was thick and dark brown (with a little help); today it’s very fine and very gray after seventeen months of chemo (Taxol and Avastin).

I see all this and I smile because I see the body, face, and soul of a survivor and a warrior.  When I look in the mirror today, I think how proud author Louise Hay (You Can Heal You Life) would be of me. When I look in the mirror today I see the person I want to be remembered as and I can say that I love what I see in the mirror.

The one bodily function that is so much better today than it was before I was diagnosed is my eyesight because hindsight is 20/20! If only I could go back to that young woman I was ten years ago and talk to her then about what I see now.

When I started this journey, I was at the height of my real estate career. I drove the latest car, had the latest fashion, nails and hair. My daughter always said (I believe with sarcasm) that I looked like a Realtor. I am not so sure she was paying me a compliment. In fact, I am sure she wasn’t because she approves of the mother I am today much more than the mother I was then, and I am about as far removed from my old self as possible.

The day I had the lumpectomy done in June 2002, I thought “well, that doesn’t look too bad.” Next came the mastectomy with re-construction in August 2002. I remember thinking “Maybe I’ll get a tummy tuck out of this.”  When I had a difficult time healing in my abdomen and wound up with a 5″ hole in my stomach, I consoled myself by thinking, “well, what the heck…I’m alive.”

So, if I COULD go back and give advice to the woman I was, here is what I would honestly say to her: “None of the stuff you are worrying about matters.  It doesn’t matter because it is not who you are.  Cancer will make you a kinder, more caring, more sensitive, more patient human being. You will be more in touch with your body and your spirituality than you have ever been before. You will experience the triumph of surviving and the joy of cherishing all your happy days. You will glow from within and that glow will make you so attractive that strangers will be drawn to you and find you beautiful. “I would paraphrase the Melissa Etheridge lyrics from Run For Life: “Cancer cut into my skin and cut into my body, but it will never get a piece of my soul.”

Of course, I cannot go back in time, so I am trying to do the next best thing.  I am writing about my experiences and feelings so that, maybe, I can remind other cancer survivors to pause as they look in the mirror and see the true beauty of their souls, which is the only beauty that lasts anyway, and the only one that counts!

Stop back next Wednesday when we post the final installment of Pat’s series where she discusses “Stress Management.”

Pat enjoy walks out in nature, reading and spending time with family and friends. Visit our website for more information on the Conference for Women Living with Metastatic Breast Cancer and to Register for the April event. Additional resources can be found through LBBC’s Understanding Guides: Metastatic Breast Cancer Series.  Later this year, LBBC will produce a guide for women newly diagnosed with metastatic cancer.

Theatre Company “Cause Célèbre” honors Living Beyond Breast Cancer

April 17, 2012

Today, LBBC is featuring a special blog written by Mary Davis, Director of Outreach for Cause Célèbre, a theatre company that premiered to great success on Sunday, December 9, 2007 at The Players in New York City. Created by Food For Thought’s Founding Artistic Director, Susan Charlotte, Cause Célèbre is devoted to fostering an enhanced understanding of psychological, physical and social issues with a play related to a particular cause presented by some of the world’s finest actors. 

As Director of Outreach for Cause Célèbre, one of my jobs is to find charities that somehow relate to the show we are producing that we can partner with and honor at our performances. Last season, Cause Célèbre produced a show called The Shoemaker, starring Academy Award nominated actor and singer, Danny Aiello. The Shoemaker takes place on Tuesday, September 11, 2001 and tells the story of an Italian-American of Jewish heritage who immigrated to the United States after escaping the atrocities of the Holocaust during World War II.  But, it is more importantly an homage dedicated to the spirit of anyone who has found the strength – from within and from the support of those around them – to overcome adversity.  It is a story of survival.

I knew that I wanted to include an organization that worked with women affected by breast cancer as one of the charities to acknowledge during The Shoemaker’s run.   My initial search criteria for a charity (besides relevance, of course) was that it be highly-rated by Charity Navigator, America’s largest independent charity evaluator that provides free financial evaluations of America’s nonprofit organizations.  Living Beyond Breast Cancer was approached after we learned that for six years (as of 2011, and most recently again for 2012) they had been awarded Charity Navigator’s highest rating of four stars – indicating that they are in the top 5% of nonprofits for both fiscal responsibility and transparency.  I didn’t feel it appropriate to urge our audiences to donate money to a charity who did not exemplify the highest commitment to the constituency they serve.  Eighty-four cents of every dollar LBBC raises goes toward educational programs and support services for women who have been diagnosed with breast cancer, empowering them to live as long as possible with the best quality of life regardless if it is measured in days or weeks or years.  LBBC helps women survive.

She’s of a Certain Age

The staff at LBBC with whom I have the pleasure of working with were helpful, enthusiastic, creative and responsive. So when this season’s production of She’s of a Certain Age, (which is related to women’s health issues) was announced, a continued partnership with LBBC was the logical choice. Written by Susan Charlotte and directed by Antony Marsellis, She’s of A Certain Age is a play for men and women of all ages.  The production, presented in three one acts, and stars Drena De Niro, Lois Markle, Robert Newman and Rosemary Prinz.  On Saturday, April 28, we will acknowledge and honor the work being done at LBBC for women everywhere with a special performance and we invite you to join us.  Event details, including ticket prices, dinner and parking specials can be found online at Cause Célèbre or by calling (646) 366-9340.  Before and after the show, LBBC representatives will be providing free materials and answering questions from performance attendees who are or may know someone who is affected by breast cancer.  All of us hope that you will consider joining us.On behalf of all of us at Cause Célèbre, I would like to thank LBBC for the work they do and to all of you reading this for your support of this amazing organization.

Previews for She’s of A Certain Age begin on April 26, 2012.  Opening night is May 20, 2012 with daily performances (excluding Mondays) through June 10. 

Not My Mother’s Journey: Part 3 of a Multi-Series

March 19, 2012

Over the last few weeks,  Heather St. Aubin-Stout, has been sharing her story. Here is part three of her multi-series written just for Living Beyond Breast Cancer.

To be honest, I am not a blogger. I’ve been told at several events that I should blog and tweet and I just can’t get comfortable with it. I’ve written several guest blogs in the past year and I always write several drafts before submitting them. I’m thinking this isn’t really what you’re supposed to do.

I guess by now you’ve figured out I’m a perfectionist. If you’ve read the past two blogs in this series you know a little about my breast cancer journey. (if not, please read them to catch up so I don’t repeat) When trying to finish this series I wanted to write about living beyond breast cancer, how it was a turning point in my life, led me down a new road. I had an epiphany while getting dressed this afternoon for the first job interview I’ve been on in over twenty years. I need to write about what breast cancer has taught me.

Breast cancer has taught me to be honest and genuine. It has helped me to be a kinder and more empathetic person. It has also shown me how nothing is perfect and while we don’t need to settle for something substandard, we can accept imperfections. Breast cancer has taught me to slow down, to breathe, to practice yoga, to be gentler with my body.

Above all breast cancer has taught me to persevere. It has taught me to be patient when trying something new. It has taught me that God has a plan, even if we don’t know what it is, your life will work out the way it is supposed to. Don’t give up, don’t stop looking for answers, and share what you’re going through.

When we share what we are going through it makes a difficult time less so, and a happy time one of celebration. In writing my memoir about my experience with cancer and how different it was than my mom’s I hope that I have written a story that moves the reader and makes them think about situations in their own lives, but most of all I hope it helps the reader through anything that they might be struggling with.

Heather is the author of Not My Mother’s Journey.  Her story continues next week.

A Daughter’s Breast Cancer Journey; Through Her Mother’s Eyes: Part 3 of 3

January 31, 2012

This entry was written by Nancy Amorosi. Many of you may remember Jaime Rossano, one of the year-long series bloggers who, in a raw and honest tone, shared her breast cancer journey from diagnosis to post treatment in 2011. In this entry, her mother gives us her perspective of the journey. Over the year, she tried desperately to hide her true feelings of fear that consumed her heart facing the reality that she could never handle the idea of losing her baby girl.

This concludes the  three-week series A Daughter’s Breast Cancer Journey; Through Her Mother’s Eyes

Read Jaime’s blogs by searching “Jaime Rossano” in the search box on this site.

Although a year has gone by and the days are no longer filled with constant appointments and treatments the ongoing reconstruction of her physical being and the rebuilding of her self image continues. Looking back over this past year brings back so many emotions. It was with the help of some very special friends and family that gave me the positive energy and strength to be strong and hold it together when I thought I could not make it through another day. My daughter became my inspiration. No mother should have to worry about losing her child. But, the reality is that this monster called “cancer” has no boundaries. We have learned that LIFE IS A GIFT~

Jaime has taken this experience and has made it her life’s work to spread the word of self breast exam to college students, to support and encourage others diagnosed with cancer, to share her heart with blogging her experience with LBBC, and starting a very special project called Cancer’s Secret Angels which provides beautiful baskets of goodies to newly diagnosed patients and sharing her story of hope to all who will listen. As her mom I could not be more proud of the way she traveled this journey.

My daughter Jaime is my hero and I am honored and privileged to walk beside her today, tomorrow and always!

I love you Sweet Pea

Jamie & Nancy


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