So, I did it. I went to the FORCE (Facing our Risk of Cancer Empowered) Conference.
If you’ve been following in the past week (which is when my decision to go all came about), I’ve been feeling a great deal of anxiety about attending this conference. First and foremost, thank you to my sister, Grace, who worked closely with Sue Friedman (founder of FORCE and amazing woman!) who generously gave me a full scholarship to attend the conference. It’s clear, even before meeting Sue in person, that FORCE is her passion, and making sure that people have experiential education is one of her priorities. Even in the first few emails between Sue and me, she always signed off her emails as “Hugs, Sue”. That’s the kind of friendliness — family feel — with which she approaches her work and her life. Thank you, Sue. And, thank you to Barbara and the entire FORCE family.
At the onset of my trip, I had gloomy feelings that I wasn’t supposed to be there. It all started with my 13-hour ordeal in the Boston airport due to cancelled flights and continuously postponed flights. I was supposed to arrive in Orlando in time for a beautiful reception and meet-and-greet. Needless to say, I arrived at 2:00am and was to be at the conference by 7:30am.
The good thing about getting there at that time, though, was that I was exhausted. And, having to deal with the drama of the airport meant I didn’t need to truly address my anxiety about going to the FORCE conference. I arrived. I fell asleep. And, next thing I knew, I was sleepwalking to the shower and getting ready for the day.
My sister Grace has not arrived, yet, so I had to anxiously go to the conference myself. Thankfully, when I did arrive, “Grace” was there with me:
I went to go and get a bagel and saw this:
Throughout the day, I saw a few more:
on a brochure
on a tri-fold presentation board
and on the cover of a book!
So, I guess my “family” was there with me already! Definitely made for an easier transition.
The first few sessions were tough, I’m not gonna lie. One of the activities we had to do as an icebreaker was to wear beaded necklaces that represented different aspects of our genetic experiences. I wore a dark blue necklace (representing BRCA 1) and a purple necklace (representing previvor-no cancer). As a younger woman there, I wasn’t necessarily surprised by the women in their late 40s and up. Many of them wore pink necklaces (breast cancer survivors). What caught my breath was the number of young women (younger than age 30) who had teal necklaces on — ovarian cancer survivors. I’m afraid of my mastectomy; I am terrified of ovarian cancer.
There is far too much to write about here — information, observations, experiences. So let me just write that I’m so thankful to have attended a BRCA specific conference. Being genetically positive for cancer is very different than having a general conversation about cancer. It just is. So, the advice given on the news, on Oprah, in health magazines, etc., is really good advice for the average person and cancer prevention.
I am not the average person.
Being BRCA is not average.
There is advice about exercise, diet, nutrition. And, then there is advice about exercise/diet/nutrition for people who are genetically positive for cancer. There is advice about chemotherapy. And then there is advice about chemotherapy — and chemo prevention — for people who are genetically positive for cancer. There is advice for people who had surgeries as a result of breast cancer. And, then there is advice for people who had surgeries as a result of the combination of breast cancer and being genetically positive.
Information, for me, is not about prevention. It’s about reduction. And, reduction isn’t just found in any one easy solution. During a presentation with the leading doctors on BRCA, one woman asked, “Do you think we’ll ever get to a point where surgery isn’t the solution for the reduction of ovarian cancer for BRCA positive individuals?” Meaning, can these doctors foresee a time when we don’t have to remove ovaries, the uterus, etc., for women who have BRCA? The doctors emphatically answered, “No. This IS the solution.” Surgery is the solution for the most dramatic decrease in cancer for BRCA individuals.
While I was at this conference, I began to realize just how important Camp Sunshine and Rb week is for my daughter. It’s an opportunity to speak — and experience — something so specific. The research, sessions, and information are so incredibly genetics specific. People don’t just talk about mastectomies — they talk about mastectomies as a way to reduce the risk of ovarian and secondary cancers. People don’t just talk about taking better care of themselves — they talk about removal of organs, tissue, and surgical risk reduction.
Even with all the anxiety, it was so comforting to be surrounded by women (mostly women) who had undergone surgery or who were on their journey to surgery.
I felt like a mini-superstar at some times. When a few people saw my name, they said, “Oh, you’re the runner!” or “I’ve been following your blog!” or “Oh! You’re Liza!” That. Was. Awwwwwhhhhesome!!
But, having people know me and read this journey ALSO meant they knew I was anxious, nervous and promising to go to the Show and Tell (thanks Steph H. and Jaclyn J). Of course, I completely chickened out the first night. I didn’t go. I just wasn’t ready.
After 2 full days, though, of seeing drawings, photos, and glimpses of women (okay, one woman DID completely flash me in the exhibit hall), I was ready to go on the 2nd day. I still felt anxious walking to the room, but managed to survive.
The first person I saw as I came up the long narrow staircase was a woman who chose not to do reconstruction. What’s funny about this dynamic — of walking into a room with topless women displaying their surgical journeys — was my desire to ONLY keep eye contact. Haven’t we always been taught not to look at a woman’s chest??? Yet, that was the whole purpose! Even though I caught the scars and chest of the women, I had only looked at them for a split second — the rest of the time I was focused on her eyes.
I walked into the next room and saw Sue, the founder of FORCE, topless on her bed talking about her surgery. She caught my eye, I walked over, and she whispered, “How are you? Are you okay?”. I replied, “Um, sure, yeah. No, not really. I feel really overwhelmed.”
Steph H grabbed me and pulled me aside. Steph had been in my shoes last year — still considering surgery, had just found out she was BRCA, and looking for the first time. “I promised myself if I came back that I would show my breasts,” she said. “So, do you want to see them?”
“Uh, um. Okay,” I said timidly.
Steph pulled down the ties on her halter top and showed me her breasts. They were round, and just started to look “normal”. “It was hard to accept at first,” said Steph. “When they were natural, I embraced them for their imperfections. Now, I don’t feel the same about them.”
Steph’s journey is still so new, too. Thank you, dear friend, for understanding.
The (shocking) truth was that the women all looked completely “normal.” There was a a range of results — no reconstruction, breasts made from stomach fat and tissue, breasts made of silicone, of saline, nipples tattooed, no-nipples, etc. And, they all looked completely normal.
When it is my turn, I will look completely normal.
The FORCE conference was, well, awesome. No other way to describe it. I went to sessions about nutrition and diet, learned Genetics 101 in a way that has never been presented to me before (i.e. UNDERSTANDABLE!), learned about mastectomy options, holistic care, and emotional body image. There were so many amazing sessions that I didn’t get to attend, too. There were sessions about men and mastectomy, the experiences of BRCA in youth (age 30 and younger), and BRCA in under-served communities. Amazing.
I’m home now and even have some great swag from the conference (I won two beautiful pieces of art work! Yipee!!). Tomorrow, I have committed to calling my breast surgeon and scheduling a date, for sure. No more “sometime this year I’ll get this done.” Moving towards a date for surgery.
Special shout out to Steph H who has gathered a team to run in solidarity with Mb4M! That’s awesome! An Mb4M solidarity team? Yahoo!!
Peace, love, and FORCE,
PS If you’re training, we’ve got a 10K coming up next week!