Archive for the ‘quality of life’ Category

Breast Cancer Awareness Month Recommended Reading, Part III: “The Emperor of All Maladies”

October 31, 2013

LBBC’s writer and web content coordinator Josh Fernandez concludes our three-part book review series for Breast Cancer Awareness Month (BCAM) with a write-up on “The Emperor of All Maladies: A Biography of Cancer.” The Pulitzer Prize-winning book was written by Dr. Siddartha Mukherjee, who spoke at our 2013 Annual Fall Conference: News You Can Use. 

The Emperor of All Maladies: A Biography of Cancer (Written by Siddartha Mukherjee, MD, PhD, published by Scribner, 2010)

After having to read Edward Jenner’s “Vaccination Against Smallpox” during my sophomore year of college, I thought I would never again pick up, let alone enjoy, another nonfiction science book. Despite the importance of that text, and my nerdy ways — I enjoy reading sociological and nutrition science text books, balancing chemical equations for fun and I recite “Battlestar Galactica” and “Buffy the Vampire Slayer” episodes by heart —nonfiction science books had been ruined for me.

Nearly 6 years later, I picked up a copy of Dr. Siddartha Mukherjee’s Pulitizer Prize-winning book, “The Emperor of All Maladies: A Biography of Cancer.” About 40 pages in, I was captivated by Dr. Mukherjee’s prose and storytelling. This renewed my appreciation for nonfiction science narratives. (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.

(more…)

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 MyMBCStory.com and with their personal social media community to help raise awareness. In addition, supporters of women with metastatic breast cancer can visit MyMBCStory.com/awareness 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.

Our New Vision and Mission

August 20, 2013

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

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.

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’s Triple-Negative Breast Cancer Focus Groups Need Participants!

March 27, 2013

TN Focus Group Header

Do you have triple-negative breast cancer, or know someone who does? LBBC is planning several focus groups to learn about the needs of women living with triple-negative breast cancer. Groups are planned in the areas of Chapel Hill, N.C., on April 10; Philadelphia, Pa., on April 12 and April 13, (focusing on metastatic breast cancer); and San Francisco, Calif., and Indianapolis, Ind., the last week of April (dates TBD). Groups last 90 minutes, and participants receive a $25 gift card for their time. If you are interested in participating in a focus group, please contact us ASAP at publications@lbbc.org and let us know which location interests you. We will be in touch with more information!

YOGA ON THE STEPS: WASHINGTON, DC REGISTRATION NOW OPEN

March 13, 2013

 

2013YOTSDCLargeIcon

 

Registration is now open for Yoga on the Steps: Washington DC, the signature education and fundraising event for Haverford, PA-based nonprofit Living Beyond Breast Cancer.  The event is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

“While Yoga on the Steps is similar to other nonprofit grassroots fundraisers it really is a one-of-kind event,” explains Jenna Jackson, LBBC’s special events manager.  “People are asked to register as a team captain or participant at yogaonthesteps.org and then fundraise for LBBC by asking family, friends and colleagues for donations. But instead of using a walk or run as our event’s centerpiece, we feature a yoga class.  Jennifer has designed the class so that anyone, regardless of skill level or body type can participate. Yoga on the Steps is a unique and powerful education program in its promotion of yoga as an important part of a person’s overall wellness plan.” t is scheduled to take place rain or shine beginning at 5:30 p.m. Thursday, June 13 on the northeast quadrant of The Washington Monument.  The highlight of the event is a one-hour yoga class for all ages and skill levels designed and led by Yoga Alliance certified instructor and founder of Yoga Unites® Jennifer Schelter, MFA with Kirtan accompaniment by Yvette Pecoraro and other local area musicians. After the class, participants can enjoy refreshments while visiting a Healthy Living Expo where event sponsors, local area businesses, yoga studios and nonprofit organizations will feature products and services promoting health and wellness.

What has grown into LBBC’s signature education and fundraising event began after Schelter’s friend and student, Courtney Kapp, was diagnosed with breast cancer.  Kapp wanted to use her home as a place where women with the disease could form a support network through the practice of yoga. She asked Jennifer to teach the class and also introduced her to LBBC’s executive director (now chief executive officer) Jean Sachs, MSS, MLSP. Together, the three women founded Yoga on the Steps.

“Now,” says Sachs, “thousands of people, most with no formal training, annually attend Yoga on the Steps in different cities to raise awareness of LBBC’s resources, stand in solidarity with women diagnosed with breast cancer and honor the memories of those who are no longer with us.”

Studies continue to indicate a correlation between yoga’s stretching exercises, controlled breathing and relaxation techniques with stress reduction, lower blood pressure and improved heart function. “More and more studies we’ve been seeing, especially over the last few years, really confirm the relevance of Yoga on the Steps,” states Sachs.

 

A study conducted by UCLA researchers suggests that yoga can help women overcome post-treatment fatigue which is estimated to affect as many as one-third of women currently in breast cancer treatment. The research, which was published December 16, 2011 in the journal Cancer, discovered that after three-months-worth of twice-weekly yoga classes, “a group of breast cancer survivors in California reported significantly diminished fatigue and increased vigor,” Andrew M. Seaman of Reuters Health said. Cancer, Volume 118, Issue 15

In addition, at the 34th Annual San Antonio Breast Cancer Symposium held in 2011, a study presented findings that women with metastatic breast cancer might benefit from the practice of yoga, as well. A small randomized trial was collaboratively conducted by yogis and physicians, including S.K. Gopinath, MD, from the Department of Surgical, Medical and Radiation Oncology at the HCG-BIO Super Specialty Center in Bangalore, Karnataka, India. The researchers found data that suggest the practice of yoga might reduce psychological distress and modulate abnormal cortisol levels as well as immune responses in patients with stage-IV disease. Medscape News Today

In 2011, LBBC began the implementation of a national Yoga on the Steps expansion initiative developed by the organization’s Board of Directors and senior staff as part of LBBC’s 2011-2015 strategic plan.  “Yoga on the Steps is a low-cost, high-return way to introduce LBBC resources to communities that may not know of their availability,” explains Sachs.  “We’ve established annual events in Philadelphia, Washington, DC and Denver with Kansas City, Missouri recently named as our fourth Yoga on the Steps host city.”

“The increasing popularity of yoga is a big factor in the growing success of the event,” she continues. “But more than that, it’s LBBC’s reputation of sound fiscal management and the trust our supporters have in us that energizes Yoga on the Steps participants to fundraise for LBBC at the grassroots level. We maintain the lowest overhead possible for the event ensuring our resources are always available to anyone in need.”

LBBC’s most recent annual report, released in July of 2011, shows that 86 cents of every donated dollar is used to fund services. For eight consecutive years LBBC has been awarded a four-star rating by Charity Navigator, the  country’s leading organization that evaluates American nonprofits, signifying it exceeds industry standards and outperforms most other charities within its cause. LBBC 2011 Annual Report

Businesses wanting to learn more about national and local sponsorship opportunities and benefits are asked to contact LBBC’s associate director of marketing and corporate relations Kevin Gianotto, at kevin@lbbc.org. General Yoga on the Steps and Healthy Living Expo questions should be directed to Jackson by emailing jenna@lbbc.org. 

About

LBBC provides services designed to help improve quality of life for women who are newly diagnosed, in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer as well as resources for family, friends and caregivers.  National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are examples of the services that are provided to help them make informed decisions for themselves and their families. 

If you are or someone you know is living with a history of breast cancer, regardless of stage of diagnosis, age, race, religion, sexual orientation or ability to pay, LBBC can help. For more information, visit lbbc.org to download a free copy of Empower, LBBC’s general information brochure or call (610) 645-4567.

Alysa Cummings: Yearly Check-Up

February 27, 2013

Alysa Cummings, Group Facilitator for LBBC’s writing workshop series Writing the Journey, shares a seasonal excerpt from her recently published cancer memoir, Greetings from CancerLand,  in February’s second submission to Living Beyond Breast Cancer‘s Writer’s Corner.

LBBC_WritersCorner

Yearly Check-Up

Excerpt from Greetings from CancerLand: Writing the Journey to Recovery

Fourteen years later and not much has changed. Not much. Not really.

Starting with the oncologist’s grand entrance.

He knocks twice, opens the door and hurriedly strides into the examining room. His energy speaks volumes (Places to go; patients to see. so many patients; so little time). I am sitting there, a veteran oncology patient, already changed, sitting on the edge of the examining table, a salmon-colored cotton robe wrapped around me.

Welcome to my yearly check-up.Cummings-Alysa_medium

As always, we begin by shaking hands. That’s our ritual. Then it’s my turn to smile and recite my opening line: so how’s my favorite oncologist?

Your only oncologist, to the best of my knowledge, Dr. C replies. There he goes – correcting me, reminding me of our running gag about his need for precision, his attention to detail. In CancerLand, Dr. C is a living legend with hundreds of patients’ medical records stored right in his head.  He won’t take any notes during the exam and somehow never forgets a date, dosage or chronic complaint. Maybe that’s why I’ll never complain about any quirky personality traits of his. An oncologist who’s a bit obsessive is a good thing, don’t you think?

Any lumps, bumps or bruises? Dr. C asks, moving briskly into Act One: The Physical Exam. I lie flat on my back. He modestly opens the gown, uncovering one side at a time, keeping the opposite side hidden, and presses the tips of his fingers in a circular pattern. Then he says the word I’ve been patiently waiting for (perfect) as he finishes with the left side and moves around the table to begin his exam of the right. Twelve years of exams later and like an addict hungry for a fix, I inhale the word (perfect), and savor how good it feels (I’m okay, I’m okay).

But honestly, is this ironic, or what? After all, there might be a short list of politically (and clinically) correct terms that could be used to describe my post-treatment upper body (altered? revised? reconstructed?) But perfect? Hardly.

Does this doctor who deals with so many breast cancer survivors know the impact of his word choice? Or is “perfect” the word this particular oncologist has decided to use with his patients to indicate that there’s no sign of disease? All I know is that perfect is a lovely word, and I can’t wait to hear him say it.

The exam comes to a predictable conclusion with light banter about our personal lives and those acquaintances we have in common, and that’s when I suddenly think of a word that I have to add to our yearly check-up script.

So, tell me, Alysa, Dr. C asks, moving towards the door, ready to conclude the exam. Overall, how was your year?

I’m ready with the perfect answer.

Unremarkable, I say, my year was unremarkable. And I see the doctor cock his head with interest. I have never used this term in our conversations before. Over the years, he has, of course. To describe my CAT scans, bloodwork and Breast MRI results. To report that everything is normal, that there is nothing out of the ordinary.

An unremarkable year, I repeat. No surgeries. I’m hoping that next year turns out to be another unremarkable year. Unremarkable totally works for me.

It certainly does.  And now that I’ve said it out loud, I need to step up to that challenge and day by day make it real until I’m in this examining room again, twelve months from today.

A disease-free reality; in my mind that’s the most remarkable thing I can imagine.

Living Beyond Breast Cancer will host another Writing the Journey Series this Spring, hosted by Alysa Cummings. And the good news is that there will be two different Writing the Journey groups in Spring 2013 – one in Cherry Hill, NJ and one in Haverford, PA.  Check back to the LBBC Blog for more insights from Alysa and future Writing the Journey creations.  You can purchase your own copy of Greetings from Cancerland, on Amazon.com!


Follow

Get every new post delivered to your Inbox.

Join 176 other followers