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. Read the rest of this entry »

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. Read the rest of this entry »

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.  Read the rest of this entry »

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. Read the rest of this entry »

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. Read the rest of this entry »

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. Read the rest of this entry »

Sharing My Experience With DCIS Helped Me Uncover My True Strength

April 2, 2014

Lori KolstadLBBC would like to welcome Lori who is sharing her breast cancer journey with us today. If you or anyone you know has been recently diagnosed with any stage of breast cancer please visit lbbc.org/guides for more information about our Newly Diagnosed publications.

 In an instant, life’s journey took me to an unexpected path.  A routine mammogram changed everything.  On May 9, 2013, Mother’s Day weekend, I was diagnosed with ductal carcinoma in situ (DCIS), often considered the earliest form of breast cancer, in my left breast. It was not a palpable tumor that I could feel with self-exam.  After hearing the biopsy results, I was terrified and in shock.  Breast cancer is not in my family history and I live a healthy lifestyle. I cook balanced meals, grow many of my own vegetables and shop the farmers market.  For the past 25 years, I’ve done cardio and aerobic exercise four times a week.

For five fearful days, I didn’t know how serious it was or what my treatment would involve. When things are uncertain, the mind often finds a way to gravitate to the worst-case scenario. When I met with a breast surgeon, the first thing he said to me was, “You will be okay. You caught this early, this is treatable, and you have options.”   Hearing his words snapped me out of my negative thoughts. I could see a future, I would be okay and I could do what I needed to do.  Read the rest of this entry »

Blog Back: Healing and Embracing Change After Breast Cancer

March 31, 2014

LynnFolkmanLynn Folkman, manager of our volunteer programs, wrote her Blog Back post  about her personal growth after reaching her 5-year “cancerversary.”  Read her story and check out our past Blog Back columns.

“Feels like some kind of wild ride but it’s turning out just to be life going absolutely perfectly.”

Every morning, while having my espresso, I view a piece of artwork with the above statement and allow it to resonate in me.

In March 2009, I was diagnosed with stage I ER, PR and HER2-positive breast cancer. I have always been a believer that things happen for a reason. Although certainly at the time, I could think of no good reason why breast cancer and chemotherapy would be on that list. As 2014 began, I was rapidly approaching my 5-year mark and found myself filled with a variety of emotions: joy, sadness, anxiety and fear. Read the rest of this entry »

This Week at LBBC: March 25 – April 1, 2014

March 25, 2014

This Week At LBBC Banner (2)
Welcome to our new blog column, “This Week in LBBC,” a weekly update of local and national events, programs and other initiatives by Living Beyond Breast Cancer.

National Programs and Initiatives

ANNUAL CONFERENCE FOR METASTATIC BREAST CANCER : We’re excited that registration opened for our eighth Annual Conference for Women Living with Metastatic Breast Cancer! Come join us Saturday, April 26 – Sunday, April 27, at the Philadelphia Marriot West in West Conshohocken, Pa. Register for the conference or apply for a travel grant and fee waiver. Visit lbbc.org/metsconference to download a conference brochure.

TRIPLE-NEGATIVE BREAST CANCER WEBINAR SERIES: Learn more about triple-negative breast cancer during our free, two-part webinar series:

  •          Part One: Medical Update: On Thursday, April 17, from noon – 1 p.m. ET, featuring Rita Nanda, MD, who will help you understand today’s standard of care treatments for triple-negative disease.
  •          Part Two: Managing Fears of Recurrence: On Thursday, April 24, from noon – 1 p.m. ET, Julie Larson, LCSW, will discuss triggers of fears of recurrence and teach you strategies that will help you.

Read the rest of this entry »

LIVING BEYOND BREAST CANCER HOSTS CONFERENCE

March 21, 2014

Annual-Conference-for-Women-BannerHaverford, PA., Friday, March 14, 2014– Philadelphia-based nonprofit organization Living Beyond Breast Cancer (LBBC) has opened registration for its 8th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 26 – Sunday April 27, 2014 at the Philadelphia Marriott West in West Conshohocken, Penn.

Breast cancer is considered metastatic (stage IV) 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)  Read the rest of this entry »


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