The memories I have of the first meeting with my oncologist are hazy, but I clearly remember her saying that she would do all she could to try to keep the cancer at bay. But she also said that there wasn’t a cure for metastatic breast cancer. While sitting there hearing her voice without really comprehending much of what she was saying, the voice in my head was saying, “How did we get here? It was just a backache.”
It’s hard to believe that was a little more than 3 years ago. According to the statistics — if you go by statistics — I should be dead. A metastatic breast cancer diagnosis has a median life span of 24 to 36 months. My 36 months came and went on August 28, 2016.
I was diagnosed with stage 4 metastatic breast cancer de novo in 2013. The cancer had spread outside my right breast, through my bloodstream, and set up shop in my spine and ribs. I had no idea until my back began to hurt earlier that month. The mammogram I had 9 months earlier had been clear. So, to say this diagnosis was shocking is an understatement.
I wish I could say it’s been smooth sailing up to this point. There have been two separate rounds of radiation that caused nerve damage, three separate surgeries, two hospital stays, five different biopsies, and countless tests and scans. I’m on my fourth treatment plan and last non-chemo option.
Knowing that your time is going to be significantly shorter than you had imagined puts things into quite a different perspective. It became very important to me to try to help other people who may find themselves in the same position I did. I had no idea before my own diagnosis what metastatic breast cancer was — or that it was terminal. I went to work to establish a social media presence so that I could possibly inform and educate from my experiences. I began blogging, sharing on various platforms, and connecting with other women that had all forms of breast cancer.
I also learned two very eye-opening things: Metastatic breast cancer research is woefully underfunded, and breast cancer is anything but the “pretty pink club” that it’s portrayed to be. I wanted to help change that, to leave a legacy that my now 17-year-old son can be proud of.
This past August, two of my closest friends invited me to join them in forming a first-of-its-kind digital magazine/community for all those affected by breast cancer: The Underbelly. We’re committed to shining a light on the darker, but very important, aspects of breast cancer that normally go unspoken or are swept under the rug. When the common narrative of how to “do” breast cancer doesn’t resonate, we want to have a safe place for those who want to show up and be their honest selves without judgment. That’s just what we do!
My initiatives to help raise more money for meaningful metastatic research have led me to become an outreach coordinator for The Cancer Couch Foundation. This newly formed organization is run by volunteers and privately funded. All donations go directly to metastatic breast cancer research, and 100% of all funds are matched by the institutions that are funded by this amazing foundation. This means the money is doubled. There is no other MBC organization like it, and I am very proud to support all their efforts whenever I can.
If someone had asked me 5 years ago what I would be doing and what my life would be like, this would have been light-years away from what my answer would have been. I have my days when I get angry because of what I have to do to make sure I keep going. I’d be lying if I said it was all hearts and glitter. But I do feel blessed that I get to work with my friends on a daily basis and I know — I’m positive — that I will leave a legacy that my son will be proud of and will share with his children should my time come before I get to meet them.
