I went to the Dana Farber Young Adult Conference today. It was snowing. In April. Luckily, Bostonians are made of stern stuff, so they didn’t cancel. Canceling is for sissies. During the afternoon, I went to a breakout session that was dance. I am not a dancer. I mean, I will dance at a club, and during high school, my style was more “chick in a cage” than anything else. The dance session started with introductions and cancer stuff. Then we moved on to breathing exercises and warm up. Lauren led us through a short dance she choreographed to Ed Sheeran’s “Shape of You.”
Since the mastectomy, I haven’t been super physical. I mean, I walk everywhere, but I’ve been pretty restricted since surgery. Plus, it’s winter in Boston, so there’s not a lot TO do. Today was the first time that I tried to do something physical that wasn’t walking or the endless stretching and physical therapy so radiation doesn’t fuck me up too badly. I don’t want the tissue expander to “migrate” (also, wtf, medical euphemisms??!). Today I jumped and danced and it felt great. I pushed myself a little bit, and it felt good to do something like that.
I talk to my body, especially my tissue expander. It’s silly, but if I hate my body, I think my body knows. Like, my body would feel my hate for the ugliness or unevenness of the tissue expander, and the tissue expander would fail because I don’t really want it or like it. (I swear, cancer has made me regress to more primitive behaviors.) So, I try to tell my poor battered body that we are going to get through. She’s been poisoned and radiated and cut up and stitched back together. That sucks. But I still love her, and I love the shape of her, and that we are staying together. The song that Lauren picked today was one we heard over and over with lyrics like “I’m in love with the shape of you” and “I’m in love with your body” and “Every day discovering something brand new” and other trying-to-score-some-action lines that can be interpreted as physical self-affirmation.
Maybe I’m just an incorrigible narcissist.
I also spoke on one of the panels about how to talk to your oncologist. We had a social worker (Bruce), an oncologist (Mandy), and two patients (me and Jordan). I thought it was a great discussion. I told people that you teach doctors how to communicate with you and they will follow your lead. I told them how I liked to unsettle my doctors a bit, and I push for answers; I said it’s important to be nice because people want to help you more. Take aways:
- Insist on answers to your questions
- What are my motivations for asking these questions
- Can reframe ways of getting help
- Tell your team how you want to receive information
- Share your preferences for receiving bad news
- It’s ok to change your mind
- Ask: “Under what circumstances will I see my oncologist?”
- Ask: “What am I not asking you?”
- Distill your questions.
- What do you really want to know and why?
- What do you really need from your doctor?
- If your doctor can’t help you, ask her who you CAN talk to about it
- Decide if you want big picture/details/timeframe/bad news, etc.
- It’s ok to ask again
- Medical team can be your friends
- Be selfish
- State: “It’s hard for me to speak up. Give me a minute.”
- Take someone to your appointment with you
- Have a pre-meeting with your appointment friend
- Bring an asshole (on your side… if you cave, bring your pushy friend/sister)
- Write down your questions beforehand
- Email your questions to the doctor if you can
- Prioritize your questions
- Power poses (Amy Cuddy TED Talk)
- Unsettle your MD (that was mine 🙂
- Show your personality
- Be a leader
- You are in charge, like it or not
Our keynote speaker, Abby, was amazing. She gave a great talk on the questions that come up throughout the process and her answers to those questions. She was engaging and funny and honest and powerful. It was great seeing a ton of people who are just like me and successfully navigating this scary place. Plus, I won the yoga mat raffle! The universe is telling me I have more stretching to do.