On January 15, 2020, I became President of METAvivor Research and Support, Inc. A man living with Metastatic Breast Cancer (MBC), the President of a national MBC organization. I am honored and proud to be a part of Metavivor.
How did I get here? It has been a journey of many ups and downs – at times a journey of fear, of hope and gratitude, a journey of strength. Yet still embedded in my mind is the image of January 2007 – sitting in the surgeon’s office expecting to hear that the lump removed from my left breast tissue was a cyst, but the words that greeted me were, “ I wish I had better news……I believe you are one of those rare cases of male breast cancer.”
Stunned, my mind shut down, the doctor’s voice garbled in the background as my inner voice shouted, “Wait a minute, men don’t get breast cancer….I’ve never heard of a man with breast cancer.” Eventually my mind came back to the reality of the moment. In 2010, I had a chest wall recurrence – pulling me deeper into this disease.
In my early stage breast cancer life my knowledge of stage IV metastatic breast cancer was limited. All I knew was that you did not want to go there because, Stage IV = DEATH. In late 2014 I read an article written by a former LA Times journalist on her experience of learning that ten years after being told she was cured, her breast cancer had spread throughout her body. By the time I was reading her story she had died of MBC. I reread the article numerous times trying to grasp and make sense of her reality. Each time I read the article I noticed that I stumbled and mispronounced the word, ‘metastatic’. Then in September 2015, I was told, “Michael, your cancer has spread. You are metastatic. You are stage IV.” I no longer stumble or mispronounce the word, ‘metastatic’.
Each of us has our own journey to where we are with this disease. When diagnosed with stage IV no doctor, nor any member of the medical team shared any knowledge or link to any organization focused on individuals living with MBC. I felt lost and alone.
In 2017, a friend told me about METAvivor’s Stage IV Stampede. I had no idea about METAvivor or the Stampede. That October I went to DC to participate in the Stampede and was blown away.
I was blown away by the sense of community, by the amazing women and men sharing their stories – raising their voices for more funding of stage IV research. I was blown away by the strength and passion of each thriver, survivor, caregiver, friend and family member determined to put a face, a story to this disease. To me, MBC is Monica, Brianna, Marina, Jerry and thousands more. I was part of something wonderful and special. I was no longer alone or lost.
In January 2018, I became a Board Member of METAvivor. The first year on the Board I listened, I learned, I connected. I listened to the stories of many formidable individuals, though struggling with MBC or dealing with the loss of someone from this disease, they were out there supporting and raising money for METAvivor. I learned of the 114 women and men who die each day – of the more than 42,000 dying each year. I learned that 30% of early stagers will progress to Stage IV and that less than 5% of money raised for breast cancer research goes to fund research solely focused on metastatic breast cancer. I connected with awe-inspiring women and men and felt the stabbing pain of loss as this disease stole them from us.
As President, METAvivor will continue to build on the phenomenal work done by Beth Fairchild and the Board Members of this incredible organization. Our focus will be to strengthen a sense of community through our Sea to Sea RV Campaign – raising awareness and connecting METAvivor with the many diverse populations living with MBC. We will persist to secure more funding for stage IV metastatic breast cancer research and encourage the expansion of our PEER to PEER groups where we come together to share, support, and care for all on this MBC path. We will focus on increasing participation in our annual Stage IV Stampede event as well as in our local/statewide groups and speak with one strong voice.
METAvivor will always be a voice, a resource, a home for MBC and early stage thrivers, survivors, caregivers, friends, family members and the medical/research community.
METAvivor will always be family.
Michael Kovarik
February 2020
