Archive for the ‘caregivers’ 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 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

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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

Difficult Challenges can Make You Strong

March 29, 2013

I would like to introduce myself, my name is Lindsay Beckmeyer and I am the new Marketing and Public Relations Coordinator here at LBBC! Going forward  I will be managing the LBBC blogs and I’m very excited to share the stories we receive with all of you! That being said, Cameron Von St. James is an avid reader of our C4YW blog and he approached me about writing a piece to share his experience as caregiver for his wife who was diagnosed with Mesothelioma in 2005. While we focus on breast cancer, I felt that Cameron’s story would be appropriate to share for our readers who are currently in the position of caregiver because no matter the specific diagnosis the role of caregiver can be quite similar. Here is Cameron’s story…

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It’s hard to realize just how much cancer can change your world until your own family is confronted with a diagnosis.  My wife Heather and I were proud parents of a new daughter, Lily, and we weren’t prepared to receive the news that Heather had mesothelioma on November 21, 2005.  I was now a caregiver to my wife and daughter, a job that I had not been prepared for by anything else in my life to that point.  It felt like chaos was setting in.

As our doctor discussed the disease with us, he provided us with some choices for treatment.  We would need to see a specialist, and we could opt for a local university hospital, a regional facility that didn’t yet have a good mesothelioma program, or a reputable specialist in Boston.  The disbelief in my wife’s face was heartbreaking, and as I looked at her and waited for some sign of interest in any of the three choices, I realized that she was paralyzed by shock and fear.  I told our doctor, “Get us to Boston!”

Our next two months were rough.  The familiarity of our daily routines was gone as we devoted all of our attention to Heather’s medical needs.  She couldn’t work after the diagnosis, and we had both been accustomed to our full-time schedules prior to this.  Now, we were arranging child care for Lily so that we could deal with the medical steps we must take.  I was afraid of losing my wife to cancer, worried that we would lose everything in the process.  More than once, I broke under the pressure and dissolved into tears in private, but I didn’t let Heather see the worst of my meltdowns.  I needed to be strong on her behalf.

However, not all of this experience was bad.  Through our struggles, we encountered so many positives that helped pull us through.  First and foremost was the community that rallied around us in our time of need.  Friends and family came out of the woodwork offering help and support.  We were so touched by their generosity, and it was this kindness that allowed us to make it through the most difficult times. Complete strangers even provided assistance and support.  Comforting words were priceless, and financial help was certainly appreciated, as the bills kept piling up and our income was significantly lowered.

When you are faced with the overwhelming impact of cancer, take advantage of every little bit of help available.  People who care will sincerely offer.  Make the most of their support. The help and support of our community was invaluable in our fight with cancer.

Second only to the love and support of our community, our greatest tool to help us through was hope.  Throughout all of the struggles, all of the bad days and moments of fear and despair, we never allowed ourselves to give up hope for a better tomorrow.  A positive attitude and outlook can go a long, long way.  My wife has frequently said that she sees life through rose-colored glasses.  This positivity was key to her survival, as it encouraged both of us to never give up, even through the toughest times.

Heather’s mesothelioma treatment over the following months would drive her cancer into remission, and she has been cancer free to this day, over seven years since her diagnosis.  I grew and learned a lot during this time, and I can honestly say that being my wife’s caregiver has made me a better man.  Now, Heather and I hope that by sharing our story, we can inspire others in their own daily battles, whether it be cancer or any other obstacle in your way.  Never give up hope, and never stop fighting for the ones you love.

“Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose. He, along with Heather and young Lily, had their world’s turned upside down when Heather was diagnosed with malignant pleural mesothelioma, just 3 1/2 months after the birth of his only child. When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma. It was his determination and refusal to compromise on doctors or treatments that led them to Boston to receive radical surgery from esteemed mesothelioma surgeon, David Sugarbaker. Heather continues to thrive 7 years later.

Like Heather, Cameron is passionate about bringing awareness to mesothelioma and the dangers of asbestos exposure. It is his hope that sharing his story will help others those battling cancer and their caregivers who provide them care and guidance in their journey.”

I Talk To Strangers, You Should Too!

March 28, 2013

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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

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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!

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

YOGA ON THE STEPS: WASHINGTON, DC REGISTRATION NOW OPEN

March 13, 2013

 

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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.

“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.

LBBC to host 7th annual conference for women living with metastatic breast cancer

February 13, 2013

 

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Living Beyond Breast Cancer (LBBC) has opened registration for its 7th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 13 – Sunday April 14, 2013 at the Loews Philadelphia Hotel.

Breast cancer is considered metastatic when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.1

Previous conferences have attracted attendees from across the country by featuring leading national health care and wellness experts who present specialized plenary sessions and over a dozen workshops designed to address the complex medical, social and emotional situations many women experience when diagnosed with metastatic breast cancer. As in past years, workshops for family members and caregivers will also be offered.

Conference attendees will have the opportunity to ask questions about current research and clinical trials, treatment options and quality-of-life concerns. Additionally, attendees are given the chance to meet, connect and network with hundreds of women facing similar challenges expanding their peer support network. Travel grants and fee waivers, provided by Susan G. Komen for the Cure, are available for those who qualify.

LBBC’s highly specialized programming for women living with stage IV breast cancer stems from the nonprofit’s 2006 release of Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources. In this extensive report, LBBC consultants Musa Mayer, MS, MFA, and Susan E. Grober, PhD, reported their findings from a survey of 618 women living with stage IV disease. The survey focused in great detail on their use of and preferences for services in three domains: information, support and resources. The data revealed insights on the information, support and practical needs of women living with metastatic breast cancer so LBBC could address the gaps in tailored resources for this population.

To do this, LBBC created not only their annual conference but a variety of other resources.  Since the report’s release, a special subsection of lbbc.org just for women with metastatic disease has been significantly expanded, free webinars and regional community meetings feature topics of appeal specifically to the metastatic breast cancer community and the LBBC Guides to Understanding Breast Cancer: Metastatic Series includes specialty titles: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects, Understanding Palliative Care and LBBC’s newest publication, Guide for the Newly Diagnosed.

Visit lbbc.org to register online and download an event brochure. To register by phone or for additional information, call (610) 645-4567.

The conference would not be possible without the support of the event’s presenting travel grant and fee waiver sponsor Susan G Komen for the Cure®. Other event supporters include Title Sponsor Genentech. 

1 Data on File. 1006812. AstraZeneca Pharmaceuticals LP. Wilmington, DE.

 

LBBC is currently seeking women living with metastatic breast cancer or their caregivers who would be interested in sharing their stories. Leading up the conference, we’ll feature these first-person accounts here on the LBBC blog and promote them via lbbc.org, Facebook and Twitter.  If you would like to tell others your story, or have any questions, please contact LBBC’s Kevin Gianotto via email at kevin@lbbc.org.

 

Josh Fernandez: Debra Jarvis and Finding Meaning

October 2, 2012

Rev. Debra Jarvis, Mdiv, says cancer is about finding meaning, trusting your gut, learning to take risks, developing your curiosity and staying awake. To highlight these points, Jarvis utilized a handful of stories throughout her closing speech at the Living Beyond Breast Cancer’s Annual Fall Conference on Saturday, Sept. 29. Here on the Blog, LBBC’s Web Content Coordinator, Josh Fernandez,  shares his experience hearing Debra speak at his first ever national LBBC conference.

Her first anecdote directly related to the title of her 2007 book, It’s Not About the Hair. After learning she had breast cancer in 2005, Debra and her husband called family and friends to give them the news. The oft response Debra heard was, “Oh my God, are you going to lose your hair?”

“After about the third phone call, I slammed down the phone and said to my husband, ‘I’m telling you, I’m going to write a book and I’m going to call it ‘It’s Not About the Hair,’’” Debra told the conference audience.

She later learned from friends that what they really wanted to ask was, “Are you going to lose your life?” For her friends and family, the hair question was a way to measure how bad the cancer was.

After explaining the book’s origins, Debra transitioned into her response to the question presented in the book: “If cancer is not about the hair, then what is it about?”

“I think any kind of really challenging experience is about finding meaning,” Debra said in her speech. “The real challenge is that nobody can tell us what our experience means.”

She said it’s up to the individual to discover this meaning, and that meanings are dynamic and change over time. Debra then discussed the importance of developing an attitude of curiosity rather than dread.

“We’ve all seen people facing challenges, and it takes a lot of energy…what if instead of contracting, we expand, move forward with our hands out and our palms up and have an attitude of curiosity, saying, “I wonder what this experience is going to be like?” she said. “When we approach any challenge with curiosity instead of dread, it suddenly becomes interesting and way less intimidating.”

LBBC’S Web Content Coordinator, Josh Fernandez

Debra said this attitude helps individuals  stay awake to possibilities and experience growth and change. She said being awake means “knowing that being alive is a gift, and that this gift is finite; it will end…To me, being awake is our task to love and leave the planet a better place in any way we can.”

Debra also said that it’s crucial not to “go back to sleep”. She cited an anecdote about a woman she met five years ago while working at the Seattle Cancer Care Alliance where she also received treatment. The woman was undergoing chemotherapy for cancer, and told Debra that she wanted to see her grandchild grow, start a garden, stop being judgmental and appreciate life in general.

Two years after the initial conversation, Debra ran into the woman in front of a chase case of a supermarket. Debra asked the woman about her grandchild, her garden and life in general, and the woman’s responses – among them being that her grandchild was a “nightmare” and that she didn’t garden because she didn’t want to ruin her manicure – indicated she hadn’t followed through on the promises she made to herself when she was receiving treatment. She was the same person she was before her cancer diagnosis; she had “gone back to sleep.”

When she finished telling the story, Debra said staying awake was important for continued growth.

“We don’t need to have breast cancer for spiritual and personal growth…but if we are touched by cancer, let’s use it. Let’s find meaning, let’s take risks and trust our gut, and be curious and open and not go back to sleep,” she concluded.

Check out Living Beyond Breast Cancer’s website to read Debra’s Ask-the-Expert questions. Also, feel free to peruse the Living Beyond Breast Cancer’s blog to read recent blog posts from Debra and stop over at Amazon.com to purchase her book, It’s Not About the Hair: And Other Certainties of Life & Cancer.


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