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YAP Conference

4/20/2017

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         In the beginning of April, I attended the Young Adult Conference at the Dana-Farber Cancer Institute. I read about the conference online and thought it would be something interesting to go to and connect with other young adults who have been affected by cancer. The conference was a one-day event and was open to patients and their caregivers. When I read that the keynote speaker had the same type of metastatic synovial sarcoma, I told my mom that we had to go.

         The weekend of the conference came and we drove up to Boston. In typical New England Spring weather, they were calling for snow. Luckily I still had all my clothes from when I went to college in Newport so I was ready for anything. I was happy to go back to Boston on my terms. For once we weren’t taking a trip up there because I had doctors’ appointments, tests, or scans. We went to dinner on the Friday at one of my favorite restaurants. 

         On Saturday morning we drove to the conference and were greeted by the Young Adult Program (YAP) team. When I got off the elevator I was happily greeted by one of the social workers that I had gotten to know during treatment who I still stay in touch with. She asked me about my time in Florida and how everything was going with my treatment. I grabbed my name tag and walked over to a community art project called “Stringing Us Together”. There were several different statements on a board that ranged from “I have a dog” to “I like to hang with my friends” to “I am a young adult with cancer”, etc. You took a piece of string and started at one statement and then wrapped it around each one that pertained to you. It almost looked like you were weaving your own web showing which statements best described you. I took an orange piece of string and wrapped it around the various statements that related to me. Then when I was finished I made a knot at the end and moved onto the next thing.

         Once everyone had checked in we gathered in a conference room where they talked about the YAP program at Dana Farber and the different programs they offer. Then they introduced the keynote speaker. I knew our stories would be similar when she put up her power point presentation and her first slide photo was a picture of her knee scar. It was identical to mine. Someone else shared the “shark attack” scar. I couldn’t believe my eyes. Finally, after more than 3 years I found another cancer patient who had metastatic synovial sarcoma. Our stories are very similar. Her story is not mine to share but the parallels are uncanny. We both were diagnosed in the summer of 2013. We both have very similar personalities in that we are sarcastic, tell it like it is, and live one day at a time. She is a couple years older than me and has a baby. She’s currently taking the oral chemo that turned my hair white. After she spoke I went up and talked with her for a little while and we exchanged contact information to stay in touch. We both said that we had never met someone else with our type of cancer and although it sucks we have cancer, it was pretty awesome to finally meet someone on the same journey. 

         I attended two workshops at the conference. The first workshop was about using technology to cope with cancer. In a nutshell, we talked about different apps that patients found useful and we also talked about the development of YAP’s own app. I quickly learned that I am just as bad with technology as I thought. I just discovered what a podcast is and how to listen to them, thanks to my sister. In the afternoon I went to a session entitled “Planning for the what-ifs”, which basically talked about how to cope with the uncertainty cancer brings into your life. I also got to see two of my friends who work for the Ulman Cancer Fund. It was nice to see them out of the office and working up in Boston to bring more of their programs there. It was nice to be at a conference surrounded by people who understood what you were going through.  

         After the conference my mom and I walked around Newbury Street and then went back to the hotel. We made sure to stop at Flour Bakery + Café to grab some of our favorite treats since they recently opened a new location near our hotel. That night we went to dinner and walked around Harvard Square. There is something about being back in Boston that makes me feel like I am at home. My family has come to love Boston after both my sister and I went to school in Boston and Newport. After I was done with the clinical trial in Boston I wasn’t sure how I would feel about going to the city again. Would my view be tainted because I participated in a clinical trial and failed? But then I quickly remembered that you can’t let the fear of striking out keep you from playing the game you love. You take your past failures, dust yourself off, and keep moving forward. Life keeps ticking on.
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