Archive for the ‘Family’ Category

LBBC’s Annual Fall Conference is for You!

July 16, 2014

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LBBC’s Annual Fall Conference, Breast Cancer Today: Individual Treatments, Shared Experiences, has a new look and feel. Catherine Ormerod, VP of Programs and Partnerships shares her highlights for the conference, taking place on Saturday, September 27, 2014 Philadelphia, PA.

Catherine-Ormerod 1Breast cancer research and treatments are constantly changing. It can be difficult to stay current with and understand the impact of these changes on you and your life. That’s why we have adapted this conference to connect you to trusted specific information. Consulting with some of the nation’s leading health specialists, this year’s conference will offer tracks to help you access the specific information that you’re seeking.

At the Breast Cancer Today: Individual Treatments, Shared Experiences conference you will get the unique medical information you seek for your specific type of breast cancer, while connecting you to others in a supportive environment. Our tracks are:

  • Triple-negative: presented in partnership with Triple Negative Breast Cancer Foundation
  • Hormone receptor-positive or HER2-positive
  • Metastatic

You can choose to follow a track or attend individual sessions based on your diagnosis or concerns. Our sessions will include information about the latest in breast cancer news, treatments and care and wellness. They will be presented by renowned breast cancer experts such as Virginia Borges, MD, MMSc; Clifford A. Hudis, MD; Rita Nanda, MD and Marisa C. Weiss. Topics will range from targeted therapies, metastatic breast cancer clinical trials, managing the side effects of chemotherapy and more, plus an engaging closing plenary, Thriving! A Discussion on Living Well – Body, Mind and Soul.

Attending a conference is a great way to not only get the latest information, but to connect with others and build a community of support. We often hear how long lasting friendships were created at LBBC conferences. I encourage you to take advantage of the many ways to share your experience – there will be breaks throughout the day, a special luncheon, closing reception and meetup groups organized by shared interests.

Registration for the conference is $50 per person but if you register before September 5th you will receive our early-bird discounted rate of $40 per person. We offer a limited number of travel grants and fee waivers on a first come, first served basis. Special thanks to Triple Negative Breast Cancer Foundation’s for its support of travel grants to women diagnosed with triple-negative disease.

Visit lbbc.org/fallconference to register for the conference, apply for a fee waiver or travel grant and to learn more about our speakers and conference sessions.

I hope you can join us in Philadelphia this September!

Catherine Ormerod
VP, Programs and Partnerships, Living Beyond Breast Cancer
cormerod@lbbc.org
P.S. – Follow #LBBCconf on Facebook, Twitter and Instagram for conference updates, staff picks on where to eat in our hometown of Philadelphia, what to see and much more!

Second Saturday Breast Cancer Six-Word Memoirs: April 2014

April 12, 2014

Welcome to the launch of Second Saturday Breast Cancer Six-Word Memoirs! Check the new editions below, and learn how you can contribute a micro-memoir of your own.

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Earlier this week, we announced that we were making the breast cancer six-word memoir campaign a monthly feature here on the blog. We proudly present five new six-words: (more…)

Breast Cancer Awareness Month Recommended Reading, Part I: “Butterfly Wishes on Wings” and “It’s Always Something”

October 29, 2013

As Breast Cancer Awareness Month (BCAM) 2013 comes to a close, our dedicated staff, volunteers and contributors want to share recommended reading that will inspire you, make you laugh and, above all, help you realize you are not alone. First up, regular blog contributor Ronda Walker Weaver and LBBC board member and long-time volunteer, Margaret Zuccotti, review books that have personally impacted them during their breast cancer journeys. Margaret reviews “Butterfly Kisses and Wishes on Wings: When someone you love has cancer…a hopeful, helpful book for kids,” written by Ellen McVicker and illustrated by Nanci Hersh, and Ronda writes about the late comedienne and Saturday Night Live performer Gilda Radner’s “It’s Always Something.”

Butterfly Kisses and Wishes on Wings: When someone you love has cancer…a hopeful, helpful book for kids (Written by Ellen McVicker and illustrated by Nanci Hersh, self-published 2008)

“The other day my mom went to the doctor. She didn’t even look sick, but she said she had to go anyway.” And so opens the story “Butterfly Kisses and Wishes on Wings-When someone you love has cancer…a hopeful, helpful book for kids” written by Ellen McVicker and illustrated by Nanci Hersh.

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Unveiling the Cancer Insurance Checklist!

September 27, 2013

As we find ourselves just a few days away from the opening of states’ Health Insurance Marketplaces/Exchanges established as part of the Affordable Care Act (ACA), Living Beyond Breast Cancer is pleased to announce the launch of the Cancer Insurance Checklist, a resource developed in partnership with 18 other cancer and healthcare advocacy organizations, with the generous financial support of Novartis Oncology. 

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An estimated 7 million uninsured or underinsured people will be using the Health Insurance Marketplaces/Exchanges  to obtain health insurance coverage in 2014. Knowing this, Living Beyond Breast Cancer is pleased to present the Cancer Insurance Checklist , a tool designed with several partner organizations specifically to help those with a history of, at risk of developing, or presently diagnosed with cancer find the insurance plan within their budget that best meets their healthcare coverage needs.

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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

A Different Type of Survivor

June 18, 2013

Patricia Brett Patricia Brett, designer and founder of Veronica Brett, a luxury line of swimwear made specifically for women with breast cancer and those who have had risk-reducing mastectomies, will be blogging throughout the summer for LBBC  about her history with breast cancer and giving tips on how to enjoy the warmer months and feel sexy on the beach. Here, as an introduction, she shares her story about testing positive for the BRCA1 gene in conjunction with a significant family history of breast cancer.

I’m not a breast cancer survivor. I’ve never had breast cancer and I hope and pray I never hear the words “You have cancer”.

Yet for someone who has never been diagnosed with breast cancer I certainly have some pretty significant scars across the middle of my chest. Why? I’m a “previvor”.

Like Angelina Jolie and so many courageous, yet unknown women before her, I elected to remove my breasts to save my life.

At the time of my risk-reducing bilateral mastectomy back in January 2003 (has it really been 10 years?) people thought I was nuts. They didn’t understand why a woman with “healthy breasts” would ever have them removed. Healthy is a relative term.

When I was a kid growing up, I lost three aunts to breast cancer. I always thought it was some type of pollution in the water or the land back in Ohio where my father and his family were raised. By the time I was 18 he had lost three of his six sisters to breast cancer.

It turns out it wasn’t the water but the genes that contributed to their cancers. As Angelina referred to them in her NY Times Op Ed piece when she became public about her surgery, “faulty genes”. For me the faulty gene has a name: BRCA1, and the mutation has a number: Q1200X.

Like survivors who know the specifics of their diagnosis (stage 1, ER+, HER2-) I know my number, Q1200X. It’s that specific mutation on that particular gene that gave me an 85% chance of getting breast cancer and a 55% risk of ovarian cancer.

But it wasn’t the gene alone. What also contributed to my risk was family history. Not only did I loose three aunts to breast cancer, my sister and many first cousins have been diagnosed with breast cancer. In total honesty I have now lost count, but the actual number is something greater than six. One cousin has also been diagnosed with ovarian cancer. Fortunately for us, all have survived.

So yes, the breast went in 2003, the ovaries back in 2007 (a significantly harder surgery than I ever imagined, story to be told at another time).

And now, I call myself a “previvor”, a person who has survived the increased risk of inherited breast or ovarian cancer, a term coined by FORCE, Facing Our Risk of Cancer Empowered, a group dedicated to providing information to women at risk of these cancers.

I’ve never called myself a “survivor”. I don’t know what it means to hear those words or to face that diagnosis. Yet so many women I have met over the years say I am a survivor. When I attended my first “young survivor” conference (now known as C4YW) in Jacksonville in 2008, they told me I was a survivor. “You’ve had four surgeries in two years and a double mastectomy, of course you’re a survivor!” I was told by one amazing young woman sporting her multi colored leis indicating her status as a five-year breast cancer survivor.

I can’t possibly imagine what it is like to learn you have cancer and I believe I have done everything I can to make certain I never hear the words “you have cancer” (full disclosure- I could still cut out the red meat and get more exercise!)

But I will never call myself a survivor. Out of respect to all the women and men who wear that mantle, I will always stay the simple “previvor”.

You’ll hear from me from time to time as I have been invited to blog for LBBC.

I’ll be sharing my story, along with fashion tips on surviving beautifully including some posts dedicated to swimwear for survivors. If you have questions for me or suggestions for blogs, I can be reached at: pbrett@veronicabrett.com

Stay healthy and sexy-

Patricia

Patricia Brett is the Founder & Designer of Veronica Brett, the first luxury collection of swimwear created especially for breast cancer survivors. After loosing three aunts to breast cancer, watching her sister battle the disease, and having her own bilateral mastectomy, Patricia created Veronica Brett to empower women to look and feel their best again.  Patricia has been profiled in O, The Oprah Magazine, Harper’s BAZAAR, CNNMoney.com, ABC evening news, as well as numerous fashion publications. She has a Master of Architecture from Yale University and resides in Manhattan with her husband and son.

A Plane In The Sky

June 3, 2013

A little poetry for your Monday! Courtesy of Suzin Glickman:

My Father was an Officer in the Air Force.

He was a  pilot.

He flew planes in the “Big One”, WWII

He is 96 and a cat with 9 lives.

I am his daughter.

——

I don’t really want to be a plane – literally,

But, in a poetic sense

If I were a plane

I would be…

(not want to be but would be now)

 

A War Bird,

As they were gloriously referred to in

“The Big One”

 

My engines are not firing on all fours

(Not in the sense I am mentally not with it, rather as a result of battle)

Low on fuel;

Flying on

Through this dark and stormy night

The plane, me, keeps flying

The odds building against it

Turbulence

Additional tactical problems arise

My sleek body is rattled with bullet holes;

Paint dull and chipping

Landing gear not functioning properly

Radio contact with tower spotty

 

Yet, me, the plane,

intends to accomplish it’s

Mission

See it through fruition

Attacked,

Battered,

Tossed about

 

The pilot will not bail,

The plane and mission will not fail

Failure, a NASA expression,

Is not an option

This plane will not crash and burn in a Fiery wreck

It will land

With as much grace

As its war torn shell can muster

Beating all odds

Mission accomplished

 

Not its final mission

Whatever patching

And touch up that can be done

Will be seen to

It will prepare

As best it can

For its next dangerous mission

 

I want to be the plane

Which despite all expectations otherwise

Stays up in the sky

And keeps flying.

Suzin Glickman May 18, 2013

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Suzin Glickman is a former Long Island girl, survivor, professor, lawyer, mother, wife and daughter who found writing and creative expression to be one of the most therapeutic and inspiring ways to cope and heal from her cancer diagnosis.  She is pleased to share some of her favorite original poems with the LBBC blog readers. You can find more of her poetry at SuzesMuses.blogspot.com.

Cancer: A Risk, A Surprise, And Certainly An Adventure

May 14, 2013

RondaWalkerRonda Walker Weaver, LBBC‘s newest blog contributor and soon to be regular contributor, shares her story about her diagnosis and how it made her step outside of her comfort zone and learn to accept the new changes in her life.

I am 54; I teach writing at our local university and I work for an education company in my spare time. I am the proud grandmother of 16 grandchildren! I found a lump in my breast on Thursday Aug. 30, 2012, and by the following Wednesday I had a diagnosis of cancer and surgery the following Wednesday – Stage 1 Grade 3 Invasive Ductile Carcinoma, Triple Negative. Twelve days from finding to removing (nothing in the nodes or surrounding tissue). I was told I’d need 8 biweekly chemotherapy treatments and then 35 radiation treatments. No one in my family has had cancer; cancer has never ever been in my vocabulary.  I knew I could not go on this journey alone, and so I invited friends and family to join me. I figured the prayers and positive thoughts would be enough to bear me up. I learned my life was out of my control, and I had to live moment by moment, not only trusting others, but actually needing others to care for me. No plans – just prayers.

I’m not one to run away – I am not one to live in fear – I will walk away from anger, hurt, betrayal, poison, but I prefer negotiating, talking things through, working things out, coming to some sort of compromise. I believe in education, intuition, and inspiration.

Yet I’m not really a risk-taker, unless a risk is defined as driving down a road without a map, or pushing myself at the gym. I won’t put my physical self in any place that might be risky – I don’t like heights, I’m not a great swimmer, I’m probably not going to sky dive anytime soon. I like intellectual risks though – what a rush it is to learn, to discover, and to know I can learn – bring it on!

I prefer “looking forward to,” over “surprise.” I love adventure, but I want to know a little about what I am embarking on. Over our back door we have the phrase, “Go out for adventure, come home for love.”  I like planning, that’s part of the adventure, part of the journey – it’s like receiving a gift card for Christmas, and then using it, 2 gifts for the price of 1!

And here stands cancer.  A risk, a surprise, and certainly an adventure. However – fear, get thee away. I will learn what I can, listen to my own body, and pray for inspiration – it is already arriving.

What I’m learning:

1. Acknowledge it – Breast Cancer

2. Don’t blame – it’s not heredity, not second hand smoke, not diet. It just is. Why me? Why not me.

3. Listen to myself – I was told “something” was coming my way, here it is.

4. Time – a dear friend of mine taught me, “Give it time, the answer will manifest itself.” Reminds me of the tune, “You Can’t Hurry Love.” Time is of the essence, but all I have is time.

5. Get out of my comfort zone – My comfort zone is this, do, do, do, busy, help, seek, find, do, do, do. Now I will learn to be still – again.

Ronda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.

Reset

May 9, 2013

???????????????????????????????LBBC would like to introduce Lucille Kasprack, a woman living with metastatic breast cancer who hasn’t allowed it to get in the way of fulfilling one of her most important dreams of being a professional artist! Here she shares her inspirational story about how she turned her diagnosis into a positive experience that ultimately changed her life in more ways than one…

Wow! If someone had told me 10 years ago that in May 2013 I would be exhibiting my artwork in a gallery in New York City I would have thought they were dreaming or a little bit crazy. But that is exactly what has happened to me after a long struggle with breast cancer. My journey started in 2003 with a diagnosis of Stage 1 breast cancer and we all know how frightening it is to receive that news. I decided I was going to tackle this head on; with my husband being my support, my art becoming my refuge, and God becoming my strength. Once surgery and radiation was over, little by little I felt like my old self again except for one difference. My approach to life was changed completely; nothing would be taken for granted ever again. Now my husband and family and my art became much more important to me. I set new goals for myself: appreciate and see my family more; and work hard at my art to become a better painter. And for the next 5 years that is what I did. We had more family get togethers and I took a lot of art classes and workshops and worked daily on my paintings.

In 2008, at my 5 year breast cancer check-up, an MRI and CT scan showed a spot under my left arm and 2 in my chest. A biopsy confirmed Stage 4 metastatic cancer. I now had to face the fact I will never be free of this cancer and I will have to reset new goals for myself. Those goals were to have more fun times with friends and family, and to not just work at painting but to work to become a professional artist, and to place my life in God’s hands. I started entering my paintings in juried art shows and exhibits and to my surprise they were not only accepted but also won prizes.

In 2011, I had to have thoracic surgery because the cancer had spread to my pleura. However, after chemo treatments and subsequent hospitalizations, my last PET scans have remained stable.

Then came 2012 and that “Wow” happened.  In the Spring I was contacted by the Agora Gallery in NYC stating that they saw my work on my website and were very impressed and requested that I submit a portfolio of my work for their review. At first, I didn’t believe it and then in time I realized what a great opportunity this was and I sent in my portfolio. A few weeks later I was informed that they would like to include my work in a future exhibit. I definitely said yes!  It turned out to be a lot of work but the end result is that my work will be on display in NYC from May 11 -31 with an artist’s reception on May 16, 2013. What an amazing journey! Never give up! I reached my goal and I am now a professional artist. I also received additional blessings. My fourth grandchild, Ashley, was born on November 13, 2012 and I continue to have stable PET scans!

Lucille is a 10 year breast cancer survivor and lives in New Jersey with her husband. She has 2 children and 4 grandchildren. Her husband is a retired school administrator and she is a retired  teacher but she continues to work daily on painting and drawing. She loves to experiment with different materials to keep it new and interesting. You can view her artwork on her website at http://lucillesartgallery.sharepoint.com!

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

May 3, 2013

2012JeanSachsHeadshotVer2WebBy Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

  • What is your perspective?
  • What questions does this article prompt for you?
  • What are your concerns for your health or well-being, based on what you learned?
  • Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.


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