Volunteer Spotlight Q&A: Caryn Kaplan

CarynPhotoWe’re honoring National Volunteer Week 2015 with a Q&A with Caryn Kaplan, who’s volunteered for LBBC for 17 years. Digital Media Specialist Josh Fernandez interviewed Caryn about her interest in LBBC, what she loves most about volunteering and why she thinks others should volunteer.

 

Josh: You’re a longtime volunteer for LBBC. Why do you choose to donate your time to us?

Caryn: When I was first diagnosed 17 years ago, I used to crawl into my bedroom after chemotherapy and go online to look for any type of information that could help. I stumbled upon LBBC. The resources, even back in their infancy, were the best I had found. I knew it was a trusted source of information, and I knew this was the organization for me.

I started attending community meetings first and then I just felt a connection to the organization and the people who work there. I knew the fit was there. I knew it very the very beginning. Their arms were always outstretched and they always had an answer to the questions I had. Volunteering seemed like the least I could do.

Josh: What are some of your favorite activities to do as an LBBC volunteer?

Caryn: I do many activities for LBBC. Each one has its own special meaning to me. I enjoy coming into the office and helping during office hours. I enjoy attending events and representing LBBC in speaking engagements at places like Fox Chase Cancer Center. I spoke for the Combined Federal Campaign (CFC) for a few years.

I love doing the Breast Cancer Helpline. I love being an empathetic listener for the callers and giving them resources. Some need to really get ‘it’ out of their system. Others just need resources and a place to turn. I just did the Hear My Voice : Metastatic Breast Cancer Outreach Volunteer Program, which is going to be a great program – it’s already in action as we speak. It’s a wonderful way to spread the word about the need for research and creating more public awareness of what metastatic breast cancer means. I like any type of advocacy work I can do, especially if it’s for LBBC. Continue reading

Mets Monday: Reflecting on Those Who Joined us for the Annual Mets Conference

This past weekend we held our 9th Annual Conference for Women Living With Metastatic Breast Cancer at the Loews Philadelphia Hotel. More than 300 people from 42 states came and gathered information, connected for support—and voiced their concern that few in the general public understand the scope and gravity of living with stage IV breast cancer. We’ll be posting lots more about the conference in the coming days, but here’s a quick look at some of our participants during the event.

LBBC’s Hear My Voice volunteers organized a group to depict the need for greater awareness of what metastatic breast cancer really means and to gain insight and support from those around them.

108everyday_1

For others, the conference provided an opportunity to gain support from meetings others facing a similar diagnosis.

This #MetsMonday, we acknowledge the loss of 108* people every day to metastatic breast cancer. We will continue to highlight the needs and experiences of people living with this diagnosis, especially as we develop a public education and outreach campaign that will launch this fall. Together, we can make all the difference in our own unique way.
If you are inspired to share your thoughts on living with metastatic disease please add your voice here or to our Facebook page or Twitter feed.
*The 108 figure comes from the 2013 American Cancer Society Breast Cancer Facts and Figures. The number of estimated deaths from metastatic breast cancer in 2013 was 39,620. Divide that by 365, and you get 108. The number of estimated deaths increased to 40,000 in 2014.

Navigating Genetic Testing and Family Risk

Lise Marlowe blogs about genetic and family breast cancer risk and navigating the genetic testing process. Live in the Philadelphia area? Learn more about hereditary breast and ovarian cancer risk during our April 26 community meeting.

award picture 2 (1)My cancer “journey” began last June on a gorgeous spring day after my daughter’s confirmation at Reform Congregation Keneseth Israel. I left my daughter’s confirmation service that morning filled with tears of joy and happiness; I didn’t realize that in a few hours, there would be different tears coming my way. That afternoon, I had a mammogram and breast ultrasound appointment. A few weeks earlier, I felt a small lump in the shower and wanted to make sure all was OK. As a busy mom, I honestly didn’t know the last time I had done a self-exam. I have since learned that most women find their breast cancer, not doctors. Early detection made my “journey” a little easier and according to my doctor, saved my life.

With dense breasts, the results of my mammogram turned out to be negative, but the ultrasound showed a mass in my right breast. A week later, the biopsy confirmed that I had stage I breast cancer. When I heard the words “cancer,” my whole world turned upside down. I was supposed to plan my son’s upcoming Bar Mitzvah, not have cancer. I called my rabbi and asked how to handle cancer and still be “mom.” She said “let your kids know that your job is to still take care of them, that doesn’t change with having cancer.”

The next day, I received a phone call from my primary doctor who was shocked to hear of my cancer diagnosis. He has known me since I was a teenager and knows I try my best to live a healthy lifestyle. I am a vegetarian, exercise every day and don’t smoke. After learning I had breast cancer, my doctor thought maybe I carried a BRCA gene and told me to get tested. If I was a carrier, my daughter, son, brother and nephew would have a risk of developing breast cancer, too. My heart sank hearing about this. I was already concerned about my family’s emotional health, and now I was worried about their physical health, too. Continue reading

Embracing Community and Participating in Yoga on the Steps

FullSizeRenderMarisa Gefen, MD is a 35-year-old physician and mother who has now added “patient” to her resume. She was diagnosed last April with ER/PR-positive breast cancer. Marisa reflects on how this journey led her to Living Beyond Breast Cancer and Yoga on the Steps.

After my shocking diagnosis in April 2014, I immediately went into survival mode. I hyper-fixated on getting through the current phase of treatment and onto the next phase. It was a whirlwind of getting a port, quickly followed by starting chemo, managing chemo side effects, finishing chemo, then on to a 9-hour surgery comprised of a double mastectomy, sentinel node biopsy, and free flap breast reconstruction. Soon, I was home recovering from this massive surgery and then stumbling into radiation daily for 5 weeks.

Then, I woke up one morning in January and suddenly realized that active treatment was all over. Now what? In this frightening journey, I was missing a sense of community of others with similar experiences, both past and present. The endless support from my husband, family, and friends, did not fill the entire void.

I heard about Living Beyond Breast Cancer right after my diagnosis. When I happened to be looking for local office space, my tour of commercial real estate ironically took me right through LBBC headquarters, which I toured. The office was warm and full of young, vibrant people. I wasn’t ready at that moment to reach out.

I was reintroduced to LBBC in December, when I tried frantically to interpret the results of the Suppression of Ovarian Function Trial (SOFT). This major trial will likely change the standard of care for me and other women under age 35 with ER-positive breast cancer, by recommending induction of early menopause (as if we haven’t been through enough) and possibly switching from tamoxifen to an aromatase inhibitor. Continue reading

Cancer Series Can Direct Focus on What’s Important

This editorial by LBBC’s Vice President of Programs and Partnerships Catherine L. Ormerod originally appeared in the Philadelphia Inquirer on March 30, 2015.

Catherine-Ormerod 1When PBS’s three-part documentary based on Siddhartha Mukherjee’s The Emperor of All Maladies: A Biography of Cancer debuts tonight, the public will get to know cancer as a shadowy and deviously brilliant historical figure that has been killing and maiming men, women, and children since the beginning of recorded history. Understanding and finding cures for cancer has obsessed generations of healers, scientists, fund-raisers, politicians, and entrepreneurs.

As a patient advocate and someone who has watched cancer steal and forever change the lives of family and friends, I hope the film will help redirect some of today’s damaging conversations about, for example, which cancers are “better” to have and whether people with cancer ought to share the graphic details of their experiences publicly. Such conversations distract us from where we should be focused: on promoting research while showing compassion for all people going through treatment and its short- and long-term consequences.

While other diseases, such as typhoid and tuberculosis, have been controlled or cured by hygiene and sanitation, Mukherjee notes that cancer has been elusive because its processes are locked in our genes and in the complex interplay of genes and their environment. Progress, while very real, has been relatively slow and uneven. As we now know, cancer can’t be cured in one fell swoop. Cancer is personal.

Continue reading

Offering Support for the Newly Diagnosed: Tips for People Who’ve Been There

New LBBC blogger Joanne Hampton posts tips for offering the best possible peer support for people newly diagnosed with breast cancer.

joanne hampton photoMy journey has consisted of nine surgeries, chemotherapy, radiation, and a positive diagnosis of BRCA1. I am an 11 year survivor. I have spoken at numerous events, sat on different committees, ran many successful fundraisers, and yet, I still feel awkward talking to someone who is newly diagnosed. They look up at me like I am about to reveal some great secret advice to get them through this. Tears begin to form in their eyes they ask me questions like “What now?”

Even though I, too, am a breast cancer survivor and have traveled a similar path, I don’t always know what to say. Because of this I was inspired to do some research for myself and other breast cancer survivors who want to offer that glimmer of light at the end of the tunnel for someone recently diagnosed.

I want to focus on some tips to think about when you are asked to speak to someone who is diagnosed with cancer. So that you can make it easier by giving them strength, make a difference by inspiring, and help by holding a hand.

Tip #1: Each person’s reaction is different.

This is very important. I can’t stress this enough. The most miniscule thing to one could be earth shattering to another. To me, losing my hair was the least of my worries. But, I have met a lot of women who were devastated and felt they had lost their dignity along with their hair. A person can’t always help or control how they feel. There’s no rhyme or reason, there’s no right or wrong but, they are real feelings and people will react differently, based on those feelings. Not all wounds are so obvious. Walk gently in her life.

Tip #2: It is not all about you and your journey or the journeys of others.

Be sensitive to her journey. Make sure you do not compare. Try and avoid saying things such as, “I know how you feel,” or “I know how hard it can be”. She needs to be herself and take her own journey. The secret is changing saying “I know” to “I understand”… because to an extent you do. As for comparing, most of the time people don’t even know they’re doing it. We don’t want her to feel bad if she isn’t living up to the expectation she sets for herself based on your experience. Continue reading

Word Associations: Breaking the Bonds between “Palliative Care” and “Hospice”

Don S. Dizon, MD, FACP, regularly blogs on ASCO Connection, where this post originally appeared. Meet Dr. Dizon at our Ninth Annual Conference for Women Living with Metastatic Breast Cancer in Philadelphia, PA.

dizon_don 2012Mom. Dad.

Happy. Sad.

Friend. Trust.

I remember playing this game. A friend would say one thing, and then I would say the first thing that came to my mind. For some reason, it would pass the time. I remember how some words would spark an emotion or a memory. Sometimes happy, sometimes not so happy. But, playing that game was one of the first ways I learned the power of words.

I started thinking about this one day when a group of colleagues were discussing palliative care. Despite how we all believed in the benefits of palliative care, we each recalled experiences where the mere mention of those words to a patient caused them to become defensive, even angry.

“I remember taking care of an older woman,” someone had said. “She was on her fourth line of treatment for metastatic breast cancer, and her scan had showed some progression. She had been having issues with pain as well, and we had to adjust her medications several times in the past month. I mentioned that she would benefit from palliative care, and I was surprised about how upset this made her. She accused me of giving up on her, telling her she was dying. It was really upsetting.”

Hearing that story made me more convinced that the associations of palliative care have not evolved, even as the evidence that palliative care benefits patients far before they are deemed terminal has accumulated. It made me think, perhaps the way to increase utilization of this service is to sever the “palliative care means hospice” connection. Yet, how to do that? Continue reading