According to the statistic (if you go by statistics) I should be dead. A diagnosis of Metastatic Breast Cancer has a median life span of 36 months. My 36 months came and went on August 28th 2016. I was diagnosed with De Novo Stage 4 Metastatic Breast Cancer in 2013. The cancer had spread outside my right breast, through my bloodstream, and set up shop in my spine and my 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.
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 that there wasn’t a cure for Metastatic Breast Cancer. While sitting there hearing her voice but not really comprehending much of what she said, the voice in my head was saying, “How did we get here? It was just a backache”
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 surgeries, two hospital stays, five different biopsies, and countless tests and scans. I’m on my 4th treatment plan and last non-chemo option.
Knowing that your time is going to be significantly shorter than you had imagined, puts things in quite a different perspective. It became very important to me to try to help other people that 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 I could inform and educate from my experiences. I began a blog, Stickit2stage4. I also created a page on Facebook and a Twitter handle with the same name. I began connecting with other women that had all forms of Breast Cancer.
I learned two very eye opening things: Metastatic Breast Cancer is woefully underfunded with regard to research efforts and Breast Cancer is anything but a “pretty pink club” that it’s portrayed to be. I wanted to help change that; to leave a legacy my now 17 yr old Son could be proud of.
This past August, two of my closest friends invited me to join them in forming a first of it’s kind digital magazine/community for all those affected by Breast Cancer – The Underbelly.org. We are committed to shining a light on the darker, but very important aspects of Breast Cancer that normally go unspoken or swept under the rug. When the common narrative of how to ‘do’ Breast Cancer doesn’t resonate, we wanted to have a safe place for those that wanted to show up and be their honest selves without judgment. That’s just what we did!
My initiatives to help raise more money for meaningful Metastatic Research has led me to become an Outreach Coordinator for The Cancer Couch Foundation. This newly formed organization is volunteer run and privately funded. All donations go directly to Metastatic Breast Cancer Research and 100% of all funds are matched by the two institutions that are funded by this amazing foundation which means the money is doubled. They have selected the most promising, cutting edge scientists in their field at the world’s leading cancer centers: Memorial Sloan Kettering Cancer Center & Dana Farber Cancer Institute. 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 five 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, however 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.
Susan Rahn was the winner of the My Cancer Chic Kickin’ Chemo Giveaway winner. Her story will be the first of many Stage IV (Metastatic) Breast Cancer thrivers to be highlighting on My Cancer Chic. I hope you find her story as educating and inspiring as I did! Please show her some love in the comments and on social media.