5 years ago, I learned my Breast Cancer metastasized. I was terrified, angry, but not surprised. A close group of friends I met through the LFS Support Group reassured me that this was not the end, it was a beginning. We met for the first time in person November 2013, in the bar of the Longwood Hotel, Boston. We were the unruly gigglers in the back two rows of the LFS Conference. We reached out to others on breaks, letting them know about our online support group. We shared laughs, tears, stories of hope, stories of loss. We were going to live LFS together, and help others along the way.
I had been to the first LFS conference in 2010 at the NIH. The experience was overwhelming, thrilling, and life changing. I met Dr. Joseph Fraumeni. I absorbed the science like a sponge. I met lifelong friends there, like John Berkeley, the first President of LFSA. We tried to navigate setting up a nonprofit for LFS while constantly cancering. We teamed up with others, like one of my best mutant friends, Trishia. So much to be done: awareness, advocacy, support, RESEARCH! Yet, it was 3 years later at the bar in Boston, through snarky jokes, expletives and many beverages, a smaller group of constantly cancering mutants decided to focus on the living and the need for support. Living LFS was born based on our values as a misfit group of mutants, with the hope of including all. We offered more than “just support”. We helped others meet up. I became President of this non-profit, with good friends and fierce advocates by my side. Living LFS is my Tribe.
In the past 5 years, Living LFS has been my focus. The women who started it with me, my sisterhood of traveling mutants. We laugh at inappropriate things and use the term mutant with the highest regard and endearment. We set lofty goals – regular meetings, conferences, telling stories about LFS to raise awareness, advocating to helpothers live their best possible life with LFS. From each one of my living LFS sisters, I’ve learned valuable lessons that made my life better. I could not have gotten through the past years without them and you. We are all Living LFS.
Over these years, every single one of our board members dealt with cancer personally. There was very little medical quiet for any of us, yet we knew we were not alone. Growing up in a cancer family when there was very little support, it is very important to me that others have options for support. I am grateful for the professionals who work so hard to help find our families better screening, treatments, and hopefully a cure. I believe whole heartedly in the need for advocacy and awareness. I also know the fear and loneliness that accompanies being diagnosed or living in a family with a hereditary cancer syndrome like LFS. It is overwhelming and frustrating to reach out for support to find there is none.
I know what it is like to live where there are not a lot of resources for families with cancer. I know what it is like to have to teach professionals how to spell Li-Fraumeni and pronounce it. I’ve been walked through clinic halls like the rare specimen. I’ve debated risks and benefits of screening and treatments until my brain hurt. (It was not a toomah!) I’ve taken the opportunity to talk with baby-docs and residents about LFS and being a parent of a cancer kid. I’ve spent months calling to schedule appointments, fix billing issues and know friends who have rooms full of paperwork that needs follow up. Through it all, the most resilient people I’ve met are those living LFS.
I know what it’s like to walk into a room full of people and feel absolutely alone until another mutant starts chatting and it’s like you’ve known each other your entire lives. I’ve wished and prayed for B9 for more biopsies on more friends in our support group than most people do in their lives. I’ve laughed at poop jokes and crazy medical happenings and the occasional funeral story. I’ve cried with friends out of fear and loss. I’ve compared scars and chemo craziness. I’ve been hugged so hard I know broken pieces stuck back together. I’ve learned so much over these years, way more than I shared. I know there are others like me and I am not alone.
I cannot possibly thank every individual here who gave me back confidence when I doubted, picked up the reins when they fell and guided the team with our mission, towards our vision. To each person who sought me out for a hug, who champions for so many different cancers we face, for our children. For those who do it quietly and do the things no one else wants to do, I see you, thank you. I must give a huge Thank You to Greg Harper for accepting the nomination to take over as President of Living LFS. He already dedicates so much time and energy to our community, I am excited to keep working with him on upcoming support initiatives. Like previous founders and board members, once you are living LFS, always living LFS. I am not leaving, but I need to focus on some personal things – and I can do that, knowing the organization is in good hands.
It is time for me to share Living LFS. Although I am stepping down as President, there are so many good things ahead for us and I will always be a part of the organization. To each and every new friend I’ve made through living LFS, thank you. For giving me support, personally and professionally. For every T-shirt sale, donation, fundraiser, card. Thank you for your time, your kind words, late night calls, messages, long distance visits and shared experiences. Thank you. For helping me create something special. Thank you for helping me LIVE.