Yesterday I celebrated my 53rd birthday, my fourth birthday since being diagnosed with metastatic breast cancer (mbc). While I was able to celebrate another year of life, 108 others with mbc in the United States died. Today, another 108 people will be robbed of their next birthday and tomorrow 108 more. Each and every day 108 mothers, sisters, friends, cousins, husbands, brothers and sons with metastatic breast cancer die. It has to stop.
This past weekend I attended the Living Beyond Breast Cancer conference in Philadelphia with over 300 others with mbc. The conference began by asking those in attendance to stand up according to the number of years they have been living with mbc. First, those diagnosed 2 years and less stand, then those diagnosed 2-5 years ago and then 10 years or more. The largest number stand for 2 years or less. By the time we get to 10 or more years there are only a handful standing. We clap and applaud these exceptional outliers, each of us secretly hoping that will be us some day, but knowing the reality is unlikely. From 2000-2013, 15 billion dollars was raised for breast cancer research, but of that 15 billion less than 7% was spent on research for metastatic breast cancer. You can read the study in its entirety on the MBC Alliance website. This year the LBBC conference trained its first group of Hear My Voice advocates, but advocacy takes time and time is one thing people with mbc don’t have, so out of frustration a die-in was organized, Why I Organized a Die-In, and Philadelphia Story. 108 of us gathered together and got down on the floor. We closed our eyes; some of us holding hands, and recognized our greatest fear. It was hard, really hard, lying there and knowing that one day I would most likely be one of the 108. I lay there thinking about all of the things I was probably going to miss, my son’s graduation from med school, grandchildren, vacations, all of the milestones and memories that make life so precious. I thought of the increasing number of young women being diagnosed with mbc and what was going to be taken from them. The picture of us is dramatic, uncomfortable, but mbc is not pretty. It’s hard to visualize the reality of living and dying with mbc when others look at me. I don’t look sick. There is a lack of congruence when you see me and think of the 108 who die each day. But when I was on the floor with those other 107 the reality became evident. My hope is that someday mbc will become a chronic illness, similar to what we’ve been able to do for AIDs. People with mbc are starting to develop their voice, I hope the world starts listening.