Archive for the ‘breast cancer’ Category

My Chance to ‘Pay it Forward’

April 22, 2014

photo 4By now most of you know LBBC blogger and volunteer, Caryn Kaplan, with her most recent blog illustrating her thoughts and emotions while attending her very first LBBC Annual Conference for Women Living with Metastatic Breast Cancer  a few years ago. In the years since, Caryn has graciously donated her time, along with many other individuals, to help the conference run smoothly by volunteering for various tasks throughout the conference weekend.  Here she shares why it’s important to her to volunteer for LBBC and what roles she’s looking forward to most at this year’s conference on April 26th and 27th at the Philadelphia Marriott West. 

Looking back, when the email arrived that Living Beyond Breast Cancer needed volunteers to help at the Metastatic Breast Cancer Conference, I quickly hit the reply button and told them I was available…

As I sat on the train taking me into Center City Philadelphia the anticipation was growing inside of me.  Yes, another Women Living with Metastatic Breast Cancer conference.  Of course I knew what to expect since I had attended the previous year.  As the train clamored down the rails and I stared outside at the quickly passing buildings, the excitement of volunteering at the conference was so hard to contain inside of me.  I remembered all of those volunteers that so politely and gently guided us attendees through the conference. I had been volunteering for LBBC at other events but this was different.  I was there to help people with whom I shared a common bond, all of us having been touched by metastatic breast cancer. Yes, I was going to be that gentle and compassionate face on the other side of the table.  The thought of this was so inspiring and empowering to me.  There were several positions that needed to be filled and I really didn’t care what I did because I knew that I was just helping someone and helping LBBC achieve their goal of bringing us all together.  (more…)

The Consuming Fear of Recurrence

April 22, 2014


Julie Larson, LCSW, is a psychotherapist in New York City who is serving as speaker for Part Two of our triple-negative breast cancer webinar series, Managing Fears of Recurrence, which takes place Thursday, April 24 at noon ET. In this blog post, Julie writes about the fear of recurrence and its impact on those diagnosed with cancer. Share your thoughts and feelings about how recurrence has affected you — Julie and LBBC want to hear all about it!

As a therapist, I’ve noticed something.  The urgency to sit with me doesn’t happen when people are losing their hair, but when it’s growing back.  I have found survivors need space not when loved ones are constantly around, but when their loved ones are suddenly silent and focused on other things.

It is in these moments, after treatment ends, someone walks into my office, sits down and unleashes their worry and fear.  Worry, about overwhelming emotions or not being emotional at all.  Fear, of using the arm that had lymph nodes removed or concern about the time between now and the next doctors visit.  I listen as people share these feelings that nibble away at their mind causing them to be scared about over doing it or not doing enough.  And underneath it all they feel sick, with fear, that cancer could return. And isn’t this the time when feeling sick, about anything, is supposed to be over! (more…)

Yoga on the Steps: Participant Spotlight

April 21, 2014

downsizeThis week on the LBBC blog, we shine our light on Sue Rosen, a longtime supporter of LBBC and our signature education and fundraising event Yoga on the Steps: Philadelphia. She became aware of LBBC at the inaugural Yoga on the Steps event in 2002.  

Wow!  You have been part of Yoga on the Steps and LBBC for so long.  Tell us more about what drew you to the event and how it affected your life.

I was at the first Yoga Unites, as it was called in the beginning. At the time I was still in treatment for my breast cancer, and was only peripherally acquainted with yoga. I attended the event, and it was a profound experience.  I felt connected to myself and the possibility of being able to heal and become stronger through the practice of yoga.  That is what I walked away from after my first Yoga, and it is what I have continued to incorporate in my life every single day since that first experience.


What motivates you and your team when you fundraise for Yoga on the Steps?

I think knowing that the money we ask for on behalf of LBBC is going to fund some of the best and most comprehensive resources for people diagnosed with breast cancer.  I’ve used some of these services, like the Breast Cancer Helpline, and know from first-hand experience how they helped me.  That LBBC makes these resources available for anyone free of charge is also very important and that there are such a large range of services for women of all ages and all stages of breast cancer.


Living In The Moment: The Best Lesson Cancer Has Taught Me

April 18, 2014

Ronda In HawaiiRegular LBBC blogger and helpline volunteer, Ronda Walker Weaver is back after reading a post by LBBC staff member Lynn Folkman about the changes a breast cancer diagnosis will bring about in a person’s day to day life. Here, Ronda discusses both the negative and positive effects her journey with breast cancer has had upon her daily life…

During my 4th week of chemo (2nd treatment) I went to dinner with 2 friends. I clearly remember telling them, “I hope I hurry and learn all I need to from this cancer journey, so I don’t have to learn it again. I need to be as focused on this process as possible.” And both of my friends saying, “I think your cancer and treatment will be something you’ll continue to learn from, long after the treatments are finished.” A light bulb went on in my head, and I knew they were speaking the truth. While my cancer treatment was the sprint, my cancer healing and processing is the marathon.

After reading Lynn Folkman’s blog post this past week (originally posted 3/31/14) and her comment about healing being an ongoing process, I realized I am not the only one who feels this. The only difference is that Lynn is 5 years out, and I’m 9 months. However, I certainly am not the same person as before my diagnosis. (more…)

I Was Not Just ‘Another Person’ With Metastatic Breast Cancer

April 17, 2014

Caryn KaplanLast week we introduced new blogger but long-time LBBC friend and volunteer, Caryn Kaplan. In her first story she explained that her cancer had spread to her liver and bones and that she was diagnosed with breast cancer for a third time, this time with metastatic disease. Caryn has attended our Annual Conference for Women Living With Metastatic Breast Cancer  for the past few years and here she shares her memories of that very first time…

As I started my drive down Interstate 95 towards downtown Philadelphia, listening to intently to my audio book, I found that my mind had drifted off the story and to a place that has a story of its own.  I was going to attend my first Women Living with Metastatic Breast Cancer Conference held by Living Beyond Breast Cancer.  I read about it on their website and received publications in the mail and to me-it was a dream come true.  Being diagnosed about a year earlier with metastatic breast cancer, I felt I was alone and very isolated.  Yes, I did know others that had breast cancer, gone through treatment and magically (so it seemed) were okay, living their normal lives.  But me, I was scared of the unknown, and how I perceived how my life would change drastically so I was anxious to find out information about my diagnosis and meet others that shared my disease.  My support system was great but they didn’t understand or could they what I was going though.  In the background my audio book continued to play but all I could think about was what the next two days had in store for me.  I had been to plenty of LBBC community meetings before and always left with more knowledge and contentment.  But I knew this was going to be different. I turned off my boo, and basked in my thoughts and anticipations.

As soon as I walked into the hotel I was immediately greeted warmly by LBBC volunteers as they guided me to my Mecca.  I registered, received my name tag (yes, I did have an identity, I was not just another person with metastatic breast cancer) and walked into the main conference room.  Where was I going sit?  Who was I going to sit with?  How am I going to strike up conversation with them?  I’m not a shy person but this was a whole new ballgame for me. I knew that I had a mission, to be able to connect and share with others about this disease we all had in common.  The excitement grew inside me. (more…)

Honoring the Memories

April 16, 2014

LBBC Awards 002

Recently LBBC hosted a party to honor our very generous and dedicated volunteers. We awarded various individuals with specific volunteer honors for their hard work in helping to further the LBBC mission of connecting people with trusted breast cancer information and a community of support. Liz Barker was one of these individuals and here was her take on the evening’s festivities…

Living Beyond Breast Cancer just had their Volunteer Appreciation Awards dinner this past week. It was at a brand new concept restaurant in Bala Cynwyd, Pa. called honeygrow.

I was delighted and honored to be chosen as an award recipient by LBBC for doing something that comes natural to me – helping for and caring about others. (more…)

A Life That Is Fulfilled

April 14, 2014

CarynPhotoToday, we introduce you to Caryn Kaplan, a long time LBBC supporter who recently was presented with our Anne Klein Volunteer of the Year Award.  Caryn has been diagnosed with breast cancer three times, most recently learning of a metastazation from her breast to her liver and bones.  Despite this, she continues to find ways her life has been positively impacted.

“The phone rang….. My doctor confirmed that the lump was malignant.  The next thing I knew I was having a lumpectomy and sentinel node biopsy.  The biopsy came back that the cancer had spread to my lymph nodes.  Stage II, breast cancer.  My life had changed forever….”

Where Caryn’s story all began…

Sandra and Burt Specter, 53 years ago, on May 12th 1960 gave birth a new baby girl.  Yes, that’s me, they named me Caryn Lynn, after my great great Aunt Clara.  It is then when I met my big brother Bradley Paul, my senior of 3 years.  We happily lived in the section of Northeast Phila, Oxford Circle.  We were all quite content there.  My parent father, a retail merchant, selling men’s wear in his store in Kensington and my mom taking on odd jobs to fill her time.  After 12 years of living on Algon Ave, my brother about to start high school, my parents had decided they wanted us to move to a place in which they believed the schools were better for my brother and me.  Then, as soon as we knew it we were moving to Cherry Hill, New Jersey.  That is where is finished we both finished our primary education.  My father now commuting back and forth to Philly to run his store, and by now my mother had opened up a string of women’s boutiques.  It was now off to college for my brother and then me.  My brother a graduate of what once was Philadelphia Textiles and now goes under the name Philadelphia University.  Three years later, I was off to Syracuse University, graduating in 1982 with a degree in Retail Buying and Management.   I got a job right out of college, at a department store formally named Bamberger’s, which is now known as Macy’s.  I started out in their buying/management training program, and quickly rose to assistant buyer.  At Bamberger’s, I joined my brother and met my now sister-in-law (yes, we all traveled that same retail route), Stephanie.  Stephanie and I became instant friends and I introduced her to my brother and one year later they were married.  (more…)

Your Breast Cancer Experience in Six Words

April 10, 2014

Last fall, we started a breast cancer six-word memoir campaign to share your thoughts and experiences with the disease. Beginning this month, we will restart the project for 2014. Read below to learn more and to see our collection of mini-memoirs from 2013.

Kim Boyer's Six-Word Memoir for Oct. 23, 2013

Kim Boyer’s Six-Word Memoir for Oct. 23, 2013

Everyone has a story. For people with breast cancer, that story can be a roller coaster of complex emotions. As an organization with a vision of a world where no one impacted by breast cancer feels uninformed or alone, we at Living Beyond Breast Cancer provide you with many ways to tell your story – first-person stories and videos, profiles, stories found on this blog and most recently, our breast cancer six-word memoirs. (more…)

Long Gone Conversation About Cancer

April 7, 2014

Jenny Burkholder 2013LBBC blogger Jenny Burkholder shares her thoughts on the novel Oz, by Nancy Eimers and how she feels it relates to her personal story and journey with breast cancer…

The last time I saw Jessica alive, we had just watched our 3 and 4 year old daughters perform in their winter concert. Our daughters, like all of the other preschool students, were adorable, and the whole audience melted when they paraded onto the stage sang songs in Spanish. At the time, we were both bald, clearly cancer patients. At that point, I was Stage II and done with chemo and treatment; she was Stage IV and dying. As we walked out into the winter cold, we talked about cancer. At one point she said to me, “If licking the sidewalk would cure me of cancer, I would do it.”

In her 2011 book, Oz, Nancy Eimers, one of my former poetry teachers, imagines a conversation in a parking lot with her friend and colleague, Julie. The poem titled, “Long Gone Conversation about Cancer” is –for Julie. Julie died in 2008 after a 16-year battle with non-Hodgkin’s lymphoma.

In the first two stanzas, Eimers writes, “The certain dark of a parking lot/not going anywhere: yeah we have to go/and maybe there’s even/ a future awaiting us like two tin cans/on the ends of a string,/maybe we’re both worried soon there won’t be anything/rippling in the string/but we stay a little while.” The image of these two women, lingering in a dark parking lot, a parking lot that will exist after both have driven away, after one has died, is beautiful and heartbreaking. (more…)

When the Bubble is Punctured: Finding Ways to Cope with Complex Emotions

April 3, 2014

Seagull-Deborah_mediumMeet Deborah Seagull, PhD, a therapist who helps people diagnosed with cancer and their families cope with the illness. Dr. Seagull wrote this post for the LBBC blog on coping with complex emotions after breast cancer, including fears of recurrence. Dr. Seagull is also the speaker for our upcoming community meeting, Survivorship: A Road Map, taking place this Monday, April 7, 6-8 p.m. at the Philadelphia Marriott West in West Conshohocken, Pa. 

Fear of recurrence is something that most individuals diagnosed with breast cancer struggle with. Oddly, many times it doesn’t matter if it is an early- or late-stage cancer, the fear of the cancer coming back or metastasizing is forefront in the minds of many women. It can be overwhelming, as oncologists can give statistics and likelihoods, but no one can ever give you certainty. (more…)


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