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.
Well I made it back from Florida in one piece. From the moment I got off the plane until now, my life has been crazy busy. The times I have to finally sit down and do nothing is usually at night and these days I’m falling asleep on the couch super early.
Florida was ever better than I anticipated. The days were filled with staying at the horse show all day: riding, grooming, grazing, and way too much shopping. You know you’ve been to one store too much when they know you on a first name basis. It was nice to finally do something normal and feel normal. The only thing I had to think about was riding and helping take care of Joe. Every time we walked into the ring, we learned something new and each time we showed, we got better and better. I got more confident jumping and being in the show ring. We even came home with ribbons. Each time they called my name for placing, I had a look on my face that said, “Wait who?” Plus, Joe was in his full element. He loved being in the warmer temperatures and hanging at a horse show for 3 weeks. Thanks to the big blizzard he got to stay an extra week while I had to be back for scans.
I finally got to feel like a normal 26-year old. I spent my birthday at the show with Joe and my barn family. We got to jump and be in the Florida sunshine on my birthday. Don’t worry, I made sure to protect my skin from the sun since I’m super sensitive now. I wore my awesome sun shirts and got a couple more at the show. I have a new nickname now that select groups of people at the barn call me. One night we went out to dinner after being at the show all day. Every time I asked the waitress for something she would say, “sure baby doll”. When she walked away, our table erupted in laughter because I’m no baby doll. Finally, my mom asked the waitress how old she thought that I was. She answered, “She looks like she’s 15.” Needless to say the waitress got that deer in the headlights look when we told her I was 26. For my birthday I was given a saddle pad and t-shirt that both say “Baby Doll” on them as a reminder of that lovely nickname. It was a great 2 weeks spent with my barn family.
Thanks to the impending blizzard I immediately had to go to the hospital for my CT scans when we got home. Later that week I met with my doctor and I was scheduled to start chemo the following week. I elected to do my chemo at home this round. I wore a pump that was stashed in a lovely fanny pack. I carried a pump that connected my port to my chemo for 24 hours. Instead of being in the hospital I got to stay on the couch in the comfort of my home. Once the 24 hours were up, I was disconnected and went on to my usual post chemo routine. I got fluids and rested on the couch because I typically feel like shit. Although I missed my nurses on BP8, it was nice to be home and be with my dogs.
I still get asked the age old question, “What are you up to now?”. My standard response is that I am still on active treatment and in between rounds of chemo I spend my time riding or traveling. Then after saying that, the next question that follows is, “Well how many treatments do you have left?” I don’t have a clear answer for that. Unlike most cancers I was never given a number of treatments before I would be done. Yes, I do get breaks when I ask for them or when my body needs to reenergize. As of right now, there is no cure for my specific type of cancer. It’s more a matter of keeping my tumors at a manageable size and treating it more like a chronic illness.
I think that’s what scares people the most when they ask me how I am doing. I can see the dread in their faces and the pity when they ask how I feel. It is as if they are afraid of how I will answer and they won’t know how to react. I understand cancer is a tricky business. However, the more you don’t ask, the harder it is for me to fill in the blanks for you. For example, if the last time you reached out to me was after the tumor was removed from the back of my knee, then boy do we have a lot to catch up on. I keep a cliff notes version in my back pocket for those days. I understand people fall out of touch and we all move on with our lives. I’ve certainly had my share of fair weather friends. At some point you realize that you need to forget the ones that have forgotten you.
For today I know that I am going to continue on this chemo for another round. As usual, my scans will determine my next steps. Those pesky things certainly have a way of controlling my life some days. At least I have gotten to know the CT techs really well and we have our fair share of laughs on scan days. I am trying to plan my schedule around horse shows this summer and vacations, but we all know that could change in a drop of a hat. You just have to learn to go with the flow and move with the ups and downs, the good and the bad.