Archive for the ‘Living Beyond Breast Cancer’ Category

Introducing My+Story

October 10, 2013

Kevin Gianotto is the associate director of marketing, public relations and corporate partnerships at Living Beyond Breast Cancer.  He’s worked for nonprofit organizations since 2002.

Two weeks ago, I attended a reception at the Dover International Speedway where I had the chance to introduce a number of individuals I met to the work we do at LBBC to connect people to trusted breast cancer information and a community of support.  The conversations I had that evening inevitably led to the opportunity for me to discuss what I am most passionate about here at LBBC –women who have been diagnosed with metastatic breast cancer, many of whom have become close friends, and the educational resources and support services LBBC has available for them.

52792_10151113120997285_1062790530_oMetastatic breast cancer—a form of advanced breast cancer also referred to as stage IV breast cancer—occurs when breast cancer has spread to other parts of the body.  Approximately 159,000 women in the United States are currently living with metastatic breast cancer, and this number is projected to increase to approximately 164,000 by the year 2015.

To raise awareness of Metastatic Breast Cancer Awareness Day on October 13, LBBC has partnered with the MedImmune Specialty Care Division of AstraZeneca to promote the launch of My+Story, an online resource center which highlights the needs of women living with metastatic breast cancer and calls attention to metastatic disease as a key component of October’s National Breast Cancer Awareness Month. Metastatic Breast Cancer Awareness Day was officially recognized by the U.S. Congress in 2009, following a grassroots awareness effort led by members of the Metastatic Breast Cancer Network (MBCN).

The My+Story site houses tools and information tailored for women living with advanced disease. The website is designed to connect patients with the information they need, and links to patient support groups that have specific programs for metastatic breast cancer patients—like LBBC and MBCN.

Visitors can learn about metastatic breast cancer and treatment options, find tips on how to take care of their bodies, and celebrate their life experiences by creating a hard copy photobook of personal stories that may be shared with loved ones. Women with metastatic breast cancer and those who are directly inspired by them can also create a personalized flower badge that can be shared at and with their personal social media community to help raise awareness. In addition, supporters of women with metastatic breast cancer can visit to download free educational materials and inspire members of their community to help raise awareness of the disease.

Other great interactive features (ones my social media team here at LBBC love) allow visitors to share their favorite images and information from the site with others via Facebook, Twitter and Pinterest. And, throughout the month, AstraZeneca will make a contribution to LBBC and MBCN each time visitors share content (up to a total of $28,000) in acknowledgment of the 28 years since National Breast Cancer Awareness Month was established and of the ongoing effort to bring metastatic breast cancer to the forefront. If you’re inclined, be sure to check out the site and let us know what you think.

Breast Cancer Six-Word Memoirs for BCAM 2013 – Week of Oct. 1

October 9, 2013

We at Living Beyond Breast Cancer want to make sure women with breast cancer have opportunities to tell their stories and inspire others in October and beyond. Feeling inspired by Smith Magazine, the creators of the Six-Word Memoir project, LBBC is collecting and posting your six-word memoirs as part of our BCAM efforts.

MaryGrace Mastroddi's Six-Word Memoir for Oct. 3, 2013.

MaryGrace Mastroddi’s Six-Word Memoir for Oct. 3, 2013.

We are very impressed with the number of breast cancer six-word memoirs we’re getting via email.


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. 

Cancer Insurance Checklist_Banner Ad_FINAL

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.


Blog Back: On Helping to Shape the New Mission and Vision

September 17, 2013


Shaffer-Anna_mediumWelcome to “Blog Back,” a new monthly column where the Living Beyond Breast Cancer staff  change up the LBBC Blog and write about their thoughts and experiences for you. Our September columnist is Anna Shaffer, our Editor and Manager, Web Content. Anna joined LBBC in 2005, and has seen the national nonprofit grow in many ways. In this edition of “Blog Back,” Anna writes about her experience collaborating with fellow staff and the board of directors to revise LBBC’s mission and vision statements. 

A couple of months ago, I was privileged to participate in a board and staff retreat to brainstorm a new mission and vision statement for LBBC. It made me think not only about how much the organization has grown since I became part of the staff in 2005, but also about what drew me to work for LBBC in first place: our focus on providing the education and support a woman needs after she is diagnosed with breast cancer.


Our New Vision and Mission

August 20, 2013


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.



Jean A. Sachs, MSS, MLSP

Chief Executive Officer


Breast Cancer Adventures – Away We Go!

August 13, 2013

Over the past few months LBBC blogger Ronda Walker Weaver has been sharing her story with us and highlighting the risks, surprises and adventures that her breast cancer journey has presented in her life. Today she shares with us her final installment of the four part series: adventure…


I found my lump on Aug. 30, had my biopsy on Sept. 4, and received the “news” on Sept. 6, with surgery on Sept. 11. My first chemo treatment was on Oct. 10, and my last radiation session was on April 18. These dates served as reminders and markers along my journey.

Even though surprises are not my forte, adventures are; I like planning, that’s part of the adventure. As I’ve mentioned before, over our back door is the phrase, “Go out for adventure, come home for love.”  I’d like to share 2 adventures I’ve had while on this journey – one, physical, the other, well, the rest of me!

First physical -

I am amazed at my body. I’ve always been in good shape, but my body was put to the test during my surgeries and treatments. And you know what? My body has not failed me. With all the needles, drugs, radiation, stress on my body, I made it! I lost every bit of hair on my body, but most hair has returned. I gained 25 pounds – so I definitely don’t look at my body and see me, but I have a body, and I am working hard at regaining my strength and being able to fit into my clothes again! Listening to my body, and watching my body deal with cancer treatments was the adventure. What’s next? How will I react? This adventure has kept me wide-eyed almost curious, as I’ve put one foot in front of the other. I can look in the mirror and see the “trick” cancer has played on my body, yet I am astonished, amazed, and overwhelmed with gratitude, at my physical strength.

Second spiritual and emotional -

I am amazed at how much cancer and its treatments has strengthened me. I’ve always been a tough, “I’ll do it myself,” kind of person. Yet I now know how important it is to be soft as well. I could not have made it through my treatments without the generosity of others. I am more calm, more thoughtful, more optimistic, less reactive. Watching my own growth take place, over time, while recognizing it, but not necessarily controlling it, has been the adventure. I am finding there is less need to speak myself, more opportunities to share of myself, less need to take myself so seriously, and more need to take others seriously. I’ve learned how to say “no” as needed and “yes” when I sincerely want. I have cried more than I have in my entire life, and I am brought to tears by the beauty around me. I am astonished at the generosity of others, amazed at the beautiful world I live in, and overwhelmed with these lessons.

A friend wrote to me, “This time will be filled with deep and unexpected changes. Some beginnings, but more endings. It brings sadness and a curiosity about the future. The answer to getting through it seems to be steeping in it fully, and feeling every single thing. That takes the fear away.” This is where the adventure has been for me. Steeping in my cancer fully, feeling every single thing.  Life is good; I believed this before cancer treatments, and I know it now.

How can a woman with breast cancer (or any other cancer) be prepared for what the future holds? There is no map showing the journey – only a hopeful destination – health, life, remission. Life can’t always be planned (another lesson I’ve learned), and flying into an adventure can be good, even if the way looks stormy.


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. Be sure to check back soon for the 3rd installment of her story!

A breast cancer diagnosis is an adventure in and of itself so be sure to check out our educational guides on various topics ranging from hormonal therapies to financial concerns here


June 28, 2013

crashRonda Walker Weaver continues her series for the LBBC blog by discussing the three major challenges she faced after being diagnosed with cancer: Rise, Surprise and Adventure. Here she discusses the surprises she faced including a more recent, non-cancer related surprise (photo)…

My life has been filled with surprises – those gifts that show up on my back porch, uninvited, asking to stay. I usually have to choices with surprises – accept in awe and learn, or reject with a whine, “That’s not what I wanted!”

Learning I had cancer came as a huge uninvited surprise. I was in shock for months and in some ways I am still shaking my head in disbelief. Nothing I’ve ever felt – surgeries, pregnancies, or illness could have prepared me for the assault on my body – from cancer. That’s where the surprise came – nothing, nothing prepared me for my treatments and the side-effects. But I quickly stopped my whining and began to see it as a gift filled with surprises – the beautiful surprises that were, still are, a part of my journey. The Surprise is in the Goodness that holds my hand along this journey. The goodness in knowing, and in not knowing -

Knowing I didn’t cause this, and I acted quickly – I am healthy, and my healthy choices made this process more simple than otherwise – no “wish I would have” for me.

Knowing I have insurance. As the bills are still rolling in, we hit our individual out-of-pocket max in one week, I am blessed with healthcare. I give to the roadside panhandlers, and I’ve joked that one day perhaps I’ll stand on the side of the road with a sign that says, “Need boob job,” to see how much money I can make. But medical care is a necessity of life, and I count my blessings.

Knowing I can trust those who are providing my medical care. This has been such a comfort – they have a proven track record, are the kindest folks, they are proactive, and they are happy to work with me and my requests. As well, I have friends who are circling around me to hold me up when I’m falling, to lay beside me when I am alone.

Knowing I have emotional and physical support. I am so blessed to have family and friends and colleagues who care about me – I have so little to give right now, and they are giving so much (two types of soup in the fridge, a loaf of homemade bread, and warm apple cake, e-mails, cards, messages, music, a book).

Knowing Scott (my husband) is devoted to me. Oh he is a good man, he serves me gently, lovingly, patiently. I vacillate between tears of gratitude and tears of frustration and pain, and Scott holds me close. He is my rock. Even with the death of his father during all of this, he stands strong.

Knowing there is a plan – there has to be a gold lining in all of this – and I am hyper-aware that I need to be learning and growing from my experiences, so they are not in vain. While I have counted down my treatment calendar, I have not wished this time away. Writing, as a way to sort things out has been great therapy for me. This really is an “age of miracles and wonder.”

Goodness also comes in the not knowing as well:

Not knowing who or where I’ll be nine months from now, or even tomorrow – that’s part of the adventure and risk I’m willing to take on this journey. It’s part of the surprise – it is the excitement, even in the thick of things.

Not knowing what the plan is – I don’t believe “God must really love you to give you this,” or “God only gives you what you can handle.” Nope, not gonna buy this, there’s too much pain and hatred in this world, and knowing these statements, well, that’s discounting agency, choice, beauty, reality. This is not the God I believe in.

Not knowing has forced me to live in the moment, and this is something I must learn – I must learn it is good to not know.


A week post radiation my husband and I bought ourselves a post-treatment gift – hybrid bicycles – for road and trail riding. We put them in our pickup and headed to Southern Utah for a week of rest and relaxation and riding. I have fallen into materialistic love with my bike, and I have enjoyed the freedom it allows me, and the knowledge that this exercise is goodness for my mind and spirit. Until . . . two weeks ago I crashed on my bike. My bike flew one way; I flew the other, landing on my left side, elbow first. I am writing this post with one hand. I had emergency surgery to reassemble my elbow. I have stress fractures in my wrist, my hand, and my right foot. I also have some nice bruises! Crashing is the surprise, the goodness comes in the knowing that heck, I’ve had cancer; I’m not going to let a boot and a cast ruin my happiness. But I am going to rest! And no more surprises – right now I prefer “knowing.”

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. Be sure to check back soon for the 3rd installment of her story!

The staff at LBBC would like to wish Ronda a speedy recovery!

For more information about Living Beyond Breast Cancer please visit or like us on Facebook.

Lightened Up French Fries!

June 4, 2013

A few weeks ago, “Kicking Cancer in the Kitchen” authors Annette Ramke and Kendall Scott gave us some tips on how to use healthy foods to help boost our moods and ease anxiety and depression. Now these two regular LBBC blog contributors are back with a calorie saving and heart healthy version of a traditional comfort food: The French fry.

Sweet Potato Fries with Peanut Dipping Sauce

When looking to “upgrade” your food choices, it can sometimes feel overwhelming. It might be too much to make a huge, 360 degree change overnight. That’s why we love to keep it real and talk about doing it step-by-step. Every step counts and will make a difference! And guess what? Eating well can be delicious, too! Believe us, we are foodies and we want what’s on our plate to make us smile and make our taste buds happy!

One favorite comfort food many of us have is French fries. Here’s an idea, based on the “Poor, Better, Best Picks” concept in our book, Kicking Cancer in the Kitchen, for satisfying your craving while upping the nutrition in your food!


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


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


See it through fruition



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


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

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.


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