What is a breast friend? A recap of YSC Summit 2016

"We were just normal girls, doing normal girl things."

That sentence perfectly captures one big part of the 2016 YSC Summit, this past weekend in Atlanta, Georgia. And those aren't my words. They are part of a very long and very powerful post by my friend and fellow survivor sister Jenna.

This is a post I didn't want to write. I don't have the words. Or, rather, I didn't have the words. But I do now. And they may be jumbled. But I've held off writing this post for long enough. It's time.

What a fun-filled, educational, inspiring weekend! 

This past weekend was my second YSC Summit. Even if I tried I could never find the words to adequately describe what it's like to spend an entire weekend with more than 600 other young women who have been diagnosed with breast cancer. In between educational sessions about genetics and cancer and intimacy, we were taking photos, sipping coffee, talking about our fake breasts and nipple reconstruction. There was yoga and Zumba and Crossfit. There was a sex toy party. Because the YSC gets it. They GET it. Sex is an issue during and after breast cancer. It needs to be addressed. 

And they addressed metastatic breast cancer, Stage 4 breast cancer, which has NO cure. The women I know and love with Stage 4 cancer are on chemotherapy and radiation, and are undergoing surgery, INDEFINITELY. There is no cure. Stage 4 breast cancer kills. 

And they addressed co-survivors: the husbands, wives, partners, friends, sisters and brothers who attended summit alongside the survivors. Because they need support, too. They need to talk about their partners who no longer feel sexy in a bathing suit or who no longer have a sex drive because they are going through medicine-induced menopause. They have watched their partners suffer, or continue to watch them suffer. They need other co-survivors to talk to. The YSC gets that, too.

My favorite picture! My "breasties" as we call ourselves, at 2015 summit (bottom) and 2016 summit. From left, Lynn, Abby, me and Nicole. Abby also has Li Fraumeni Syndrome. 

And the YSC gets, most of all, that, as Jenna said, WE ARE ALSO JUST GIRLS. Ok, we're young women. We're single or married. We have young kids or we're struggling with infertility or adoption. We want to talk about bras and sex and wine and yoga and shopping. We want to take selfies all day. We want to dress up and wear lipstick and dance the night away at a Hotlanta dance party. The YSC gets that. That's what it did for us this past weekend.

It did ALL of it. 

The summit addressed our biggest fears, biggest questions, biggest concerns. It let us ask questions anonymously through an app on our phones so nobody had to know who it was asking about sex after hysterectomy, or why insurance doesn't cover genetic testing, or what options are available for breast reconstruction, or what to do if a best friend deserts you after diagnosis? We got to ask all of that. Both anonymously, and in private group settings.

We learned about genetic testing of tumors. Yes, TUMORS. Genetic testing of tumors to specifically target and treat the type of mutation found in the tumor. Precision medicine. 

We talked and learned about sex and intimacy; how to communicate with your partners and loved ones; fertility and family planning; the state of young women and breast cancer; and what today's top researchers are doing about it. Representatives from Dana Farber and the NCI were there. Sex education professionals. A professional chef who specializes in meals for cancer patients. Book authors. And vendors. Oh, the vendors! Different organizations, nonprofits and resources from around the country were present, giving out free items (sports bras) and educational materials. 

All of the information was helpful, was relevant, was timely. I connected with friends I met at last year's summit, as well as my Tour de Pink brothers and sisters. And I also made about 200 new friends.

But one friend in particular wasn't there. Ishiuan. Ish has been fighting metastatic breast cancer, and was recently admitted into hospice. She was at last year's summit, rode in 2015 Tour de Pink, and was training for 2016 Tour de Pink. 

Drinking our yummy organic cold-pressed green juice!

Two winters ago - I remember it well as we were in Florida for winter break and checking our phones every few minutes to see if she was out of surgery - she had brain surgery to remove tumors from her brain. Just recently she underwent many more surgeries, as the cancer continues to spread. she has recovered from her open heart surgeries, which paralyzed her vocal chords. 

Ish was the first person I "met" prior to my first Tour de Pink in 2013. We emailed before the ride. I told her how nervous and scared I was. She encouraged me and supported me. We got to know each other through email. And then when I arrived in Philadelphia for registration in September 2013, Ish greeted me with open arms. She took me around the room and introduced me to Jamie, who is now one of my best friends, and Lisa Frank, co-founder of Tour de Pink, who is also currently fighting metastatic breast cancer.

I was asked to be interviewed by SELF magazine for a special video project! 

Tour de Pink 2013 was memorable for me for a LOT of reasons. One of those reasons was Ish. I had never seen someone ride like Ish rides. I saw her pedal up those steep hills - the ones that literally made me nauseated - and I knew I could do it. She smiled and she laughed and she cheered throughout the whole ride. SHE kept me going to finish strong the entire Tour de Pink 2013, and she continued to encourage me throughout the rides that were to come.

Ish welcomed me with open arms in 2013, and since then she has been one of the strongest, most inspirational women I have come to know. 

She was very much missed at summit, along with her husband Adam, who is always by her side. Being at summit is bittersweet in that way: the weekend is inspiring and uplifting. But we're also reminded of what this all means, of the "sisterhood that nobody asked to join." We are connected, we are inspired. But we also are reminded of loss. And of what breast cancer actually does. What it's actually capable of. 

Superhero PJs at the Friday night pajama (sex education) party!

I continue to pray every day for Ish - for her continued strength, for her peace, for her comfort. She is in everything we do. She was in every part of summit. 

We all want to be normal girls, doing normal girl things. That's why summit is so great. Because I can just BE - fake boobs and anxiety issues and all - along with my other girlfriends, who also have fake boobs and similar anxiety issues. The fear of recurrence, the sleepless nights, the having trouble fitting in elsewhere, when friends are talking about breast feeding or getting pregnant. We have each other. For this one weekend a year. We can be normal girls, doing normal girl things.

Breast cancer takes a lot from us. It takes a whole hell of a lot. It takes the body parts were thought we needed, and the people we love. It takes our innocence and changes our plans.

But what it doesn't take is the sisterhood part - the part YSC most frequently speaks about. Breast cancer is not ONE specific disease, and like a snowflake, no two experiences are alike. No matter the age, the stage, the years in or out, the sisterhood is strong. The YSC knows that and the YSC shows that.

I didn't want to join this sisterhood, but because I didn't have a choice, I'm glad the YSC is here. 

My best friend and my biggest supporter! The YSC knows how important co-surviors are, and makes sure they are an important part of summit. 

I'm coming up on five years since my diagnosis. That's been a hot topic for me right now. But what I want you to know is that breast cancer is always there. It may be there in different ways than it was five years ago. 

Maybe, if we're lucky, the disease part fades a little. If we're lucky, we become disease-free. The scars fade a little. We get new breasts, or we don't. The implants settle in, or maybe they don't, and they still hurt. Or in my other survivor friends' cases, who are on hormonal drugs for the next 5 or 10 years, their chemical-induced menopause is a constant reminder of the breast cancer. 

Ishiuan

No matter the story, no matter the journey, the impact of the disease remains.

I think the YSC gets that, too.

It gets that, too.