Last 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.
I sat down at a table with women and their husbands, many of whom had traveled from all over the country. I wasn’t with my spouse but in the end I learned so much about the spouses, partners or caregiver’s role in this roller coaster we all were experiencing. One by one as we sat down at the table we all introduced ourselves. Conversation flowed. We talked about our families, how they came to learn about LBBC, then about our cancer. I then realized, I was not alone in this craziness and each one of these individuals shared the same feelings and emotions I had been experiencing. I then looked around the huge room, now filled with dozens of round tables and saw hundreds of women and men who were touched by metastatic breast cancer. It was a mixed bag of emotions for me, one being that it’s so sad that all these people are going through what I was, but on the other hand, glad that LBBC had brought us all together to share, communicate, educate and ultimately empower us and let us know that we were not alone.
After enjoying continental breakfast, our attention now turned to the stage where we were welcomed by the CEO of LBBC and other introductions followed. After the introduction it was time to break up into the individual speaker sessions that we had chosen from a list of topics that interested us. I walked with my new found friends and eventually we split up- they went to their sessions of choice, while I went to mine. There were many topics that interested me but I had chosen the ones that most fit my needs. The speakers were amazing. I have been to many LBBC conferences since then and remember each speaker. With 10 plus years (at that time), the information I took away was invaluable. What I found in these breakout sessions was that the information that I had learned I could actually take back to my doctors and ask them about it and if it would help in me in my treatment plan. In other breakout sessions I walked away with tools to learn how to how to live and cope with metastatic breast cancer, that I still carry in my pocket and still pull out on a daily basis to this day.
After the two days of socializing, listening to presentations, interacting with the speakers and plenty of eating, I had gotten exactly what I was expecting from of the conference. It was indeed my Mecca. It was a place where I learned that I was not alone. The knowledge I gained from the speakers is valuable information which is now firmly imbedded within me. I took all of the tools I learned seriously, and I still use them every day, which allows me to live a very normal active life.
Yes, I did forget to mention one last thing—the spiritually of it all. The conference connected me with hundreds of women and men. To me, they represented the thousands of people affected by this disease. We are not alone. We have a place where we can address medical, social and emotions needs. Thank you LBBC for bringing us together at the Metastatic Breast Cancer Conference, an experience I will never forget and I look forward to attending the conference each year.
Each night, when I drove home from the conference, I didn’t turn on my audio book, or the radio, but instead, I basked in what I found was the most profound and prolific days of my life. Thank you LBBC for giving me that gift.
On April 26th and 27th LBBC will be hosting our 8th Annual Conference for Women Living with Metastatic Breast Cancer at the Philadelphia Marriott West in West Conshohocken, Pa. This conference is a two-day, national conference designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and caregivers experience. For more information or to register please click here.