Be Thankful: Jane-Ellen Miller’s Poem

???????????????????????????????Just in time for Thanksgiving, a poem from Jane-Ellen Miller, who attended our fall writing series, “Writing the Journey.”

In my secret mind, I tell myself life is good.

I woke up this morning,

My car started

I worked out.

I tell myself life is good.

 

I worked from home today,

Stopped by my favorite deli for lunch,

Enjoyed the sunshine,

And I tell myself

Life is good.

 

My son stopped by

just to check on me

Life is good.

Almost didn’t think about cancer today –

Life is still good!

 

Jane-Ellen Miller

November 2014

 

Ms. Jane-Ellen Miller brings over 35 years of diversified experience in higher education and information technology. Jane-Ellen graduated from Cleveland State University, with a degree in English.  Her passion for writing was instilled at a very young age by her Dad, who also enjoyed expressing his views by writing.

It’s About You: Lynn Folkman’s Story

emailHeader760x1604_BlogResizeAt this year’s annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, we’re not just providing you with the unique information you seek; we’re offering you the chance to connect with others and learn that you’re not alone.  While being treated for breast cancer, Lynn Folkman went to her first-ever LBBC fall conference in 2009. She blogs about that day and the importance of creating the conference experience you want. Lucky for us, Lynn joined the team at Living Beyond Breast Cancer in 2012 as our Community Engagement Manager.

Lynn Folkman LBBC Fall ConferenceIt was fall 2009 – I had just completed chemotherapy, radiation therapy and was a few months into my year of taking trastuzumab (Herceptin) and I was exhausted. I found out about the LBBC Annual Fall Conference through one of my support groups and the thought of attending alone was too overwhelming for me, so I agreed to attend with a friend I met during treatment.

The conference that year was held at the Pennsylvania Convention Center. I was a bit nervous about attending, as I had previously worked at the Convention Center and still knew quite a few people there, and they did not know that I had breast cancer. As well, the tables were turned; I was a meeting planner and instead of producing the event, I was experiencing the conference as an attendee.

I was in an emotionally raw and vulnerable state. I was at the point in my treatment where I often wondered if or when I would ever feel like myself again. I was tired of hearing the comment, “You look really great!” I longed for a day where I could be invisible and no one would know that I had breast cancer. However, I was still mostly bald and there was no masking what I was currently experiencing. I was apprehensive about having to endure glances from people who knew me, which would be mixed with a combination of sympathy and trepidation.  They were used to the vivacious energetic Lynn, not the exhausted Lynn.  How could I possibly fake it when I did not even have the energy to do so?

A few things occurred that day which continue to deeply comfort my mind and spirit and reinforce the special place in my heart for the LBBC Fall Conference. Since it was my first time attending, I had no idea what to expect. The day began with the opening session, the speaker welcomed the group and then asked people how far out they were from the time of their diagnosis. When your year was called, you were instructed to raise your hand. One year and under, my hand went up. I don’t remember the exact breakdown, but it went something like this: 1-5 years, 5-10 years, 10-15 years, more than 15 years and so on.  What I do remember is being overwhelmed as I heard cheers and looked around the room and saw so many raised hands and proudly smiling faces.   Continue reading

LBBC’s Annual Fall Conference is for You!

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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!

Yoga: A Survivor’s Tool for Strength

KateGarza2 for 5 28Kate Garza is a mother of three teenagers, cancer survivor and yoga instructor in Cheltenham. Her “Team Kangaroo-om”  participated in our event, Yoga on the Steps: Philadelphia, on Sunday, May 18.  For more information or to register for a Yoga event near you, visit yogaonthesteps.org. Read Kate’s blog at LotsaHelpingHands.com.

I climbed the steps of the Philadelphia Art Museum last Sunday for Living Beyond Breast Cancer’s Yoga On The Steps, a sun drenched block party of yoga enthusiasts and breast cancer affiliates. Occasionally my thoughts traveled back to last year’s event, which I attended during my own active treatment, bandanna wrapped around my chemo-bald head. On that gray day a year ago I felt as bad as the cold fog and drizzle that enshrouded the steps.

But last Sunday, bathed in sunshine, I shook off a year and a half of living with breast cancer treatment. I gathered with a large team from my kids’ high school, faculty and students together. I was there to give and gain support and to advance LBBC’s mission of bringing patients together with resources throughout the journey, one that can thankfully now include many years of health beyond treatment.

Cancer survivors have long had an intuitive sense that yoga helps body and mind, but now we have studies to prove it. In March, the Journal of Clinical Oncology published a study of 191 breast cancer patients by researchers at MD Anderson Cancer Center in Houston. It linked yoga to improvements in self-reported quality of life, including measures of mood, pain and fatigue. Practicing yoga also appeared to help regulate the stress hormone cortisol, which is tied to poor survival among breast cancer patients.

Aware of these unique qualities of yoga, Living Beyond Breast Cancer has held Yoga on the Steps as its signature fundraising event since 2001, and in recent years has expanded to other cities — this July in Kansas City and September in Denver. Last year, LBBC, the Ardmore-based national education and support organization, published a Guide to Understanding Yoga and Breast Cancer, detailing the benefits of yoga to coping with anxiety, fatigue, strength and body image.

But what exactly is it about yoga that helps? Continue reading

Do You Have Any Idea How Beautiful You Are?

Musser_Barbara_2014Breast cancer can drum up many complex emotions and thoughts for those who are newly diagnosed, especially around body image. Barbara Musser, CEO and founder of Sexy After Cancer, writes about the importance of defining your own beauty and invites you to learn how to do this by joining us for our free webinar at noon ET/11 a.m. CT on Tuesday, May 20, held in partnership with Susan G. Komen of Greater Kansas City

Dealing with a breast cancer diagnosis and treatment is a big challenge that goes on for quite a while. On top of that, it’s easy to feel like less of a woman, especially with altered or removed breasts, instant menopause resulting from chemo or hormonal therapies and other physical changes that can happen.  There’s not a lot of conversation about our body image, self-esteem and self-love and our intimate and sexual lives. And yet these are the subjects that have the most to do with the quality of our lives.

It’s the elephant in the room that no one mentions. Partly it’s because these aren’t easy topics to broach and partly because we don’t know to ask about them if we don’t know what to expect. You may have experienced this spiral. Continue reading

Beyond C4YW: LBBC’s Continuing Commitment to Young Women

LBBCbannerJean A. Sachs, MSS, MLSP, wrote the letter below to reflect on the end of C4YW and to remind you all that LBBC remains committed to serving young women affected by breast cancer. For more information about our upcoming events and programs, visit our website, lbbc.org.

Dear Friends,

This year marks the end of C4YW, an event that was founded in 2001 by Living Beyond Breast Cancer (LBBC) to address the needs of women diagnosed with breast cancer under the age of 45. The following year, we invited the Young Survival Coalition (YSC) to co-host the event with us.

Over the past 13 years the conference became the largest of its kind. LBBC and YSC worked as equal partners in developing the conference, marketing it and raising the funds necessary to meet the need. First and foremost in our partnership was our goal to provide the best information, support and networking possible for young women affected by breast cancer. We achieved that and so much more. More than 10,000 participants benefited from C4YW, and we allocated over $1 million in travel grants to bring women and caregivers to this unique, and many times transformational, weekend.

On behalf of LBBC, I thank you for your participation in the conference.

Last November, YSC informed us with the bittersweet news that they would be ending the partnership following the February 2014 conference. I want to assure you that while the C4YW brand will be “retired”, it in no way impacts the commitment LBBC has to serving young women.

LBBC has been serving young women since 1996, and our strong commitment to providing robust services for them and their caregivers remains steadfast. Currently, LBBC’s Young Women’s Initiative includes:

I am so proud of the rich, timely and compassionate programs LBBC offers young women through our Young Women’s Initiative. In the coming months, I will be working with the board and staff to identify new ways to add to our programmatic offerings that serve this important LBBC constituency.

Onward,

Jean A. Sachs, MSS, MLSP
LBBC Chief Executive Officer
Toll-free Breast Cancer Helpline: (888) 753-LBBC (5222)
354 West Lancaster Ave., Suite 224
Haverford, PA 19041
(855)-807-6386

Listening to the Voices of Those With Metastatic Breast Cancer

Catherine-Ormerod 1This week, articles published in the New York Times and The Guardian criticized blogger Lisa Boncheck Adams’ decisions to publicly write and tweet about her experiences with metastatic breast cancer.  Catherine Ormerod, Living Beyond Breast Cancer’s vice president, programs and partnerships, weighs in on this issue. 

This past Sunday former New York Times executive editor Bill Keller wrote an op-ed posing questions about Lisa Boncheck Adams’ public blog about her experiences with metastatic breast cancer. In particular, he questioned the choices she has made as a young wife and mother to extend her life as long as possible through, what Keller termed, “heroic measures”: taking treatments until they stop working and moving on to the next treatment. The treatment that Adams’ has pursued is, in fact, the standard way of treating metastatic disease. Continue reading