How do you condense 7 years into 500 words? How can I transport you from the dizzying highs of cancer “conqueror” by 26 to two-time “warrior” with a regional recurrence by 31? How do I convey the desperation of a Metastatic Breast Cancer diagnosis by 32, just 3 months after a clean scan? I can tell you, there aren’t words to describe the hopelessness I felt after my MBC diagnosis in late 2014.
This wasn’t how my story was supposed to end-I had BEATEN breast cancer TWICE – as I traversed the grief cycle, I descended into an oubliette – a place of forgetting. No one could reach me. I searched the internet endlessly looking for an injection of hope. I slept mere minutes at night, waking each time in a sweat-soaked terror. I moved my bedroom downstairs, put blankets over the windows. I’d set an alarm every fifteen minutes throughout the night so I could relish the darkness that filled my room and was swelling in my heart.
Morning came with vomiting and hours working up the courage to get out of bed. I found a friend in downers and opioids which were freely supplied to help me sleep and manage imaginary pain. When I’d sober up enough to realize this wasn’t a terrible dream, I’d take another handful of pills thinking Maybe I just hadn’t consumed the right prescription for a life without cancer. I stopped eating, showering, going to work and when I could no longer hide from my responsibilities nor resume living on my own, I had myself committed to a psychiatric hospital.
When I emerged, I found that helping others navigate MBC and connect with peers took my mind off of my own fears and I began to advocate for MBC treatment research. I envisioned a fundraiser- a masquerade ball for METS- a METSquerade! I connected with a beautiful woman on Facebook, Lisa Quinn, who lived just 20 minutes south of me. She and her husband Patrick had the marketing skills and network to make the event a reality and the first annual NWA METSquerade benefiting METAvivor was born. We raised $137,000 in our inaugural year- that’s a 2 YEAR RESEARCH GRANT! Maybe it’ll fund life-extending research for Lisa and I. I have to believe. It’s what gets me out of bed each morning.
I’ve seen the breast cancer community take notice of our plight. Lisa and I took part in the Stage IV Stampede in DC on October 13th, MBC awareness day. There were 200 people marching including many of our MBC friends and actress Mira Sorvino. METAvivor was also JUST included in Vice-President Biden’s Moonshot program. We are on the cusp of sweeping change. I pray we’ll be around the see it.
I sleep well these days. When I open my eyes I’m grateful for the morning. Getting out of bed is a challenge only because I stay up too late and have packed on a few too many pounds. I accept that I can’t wish or medicate myself into a life without cancer and I have made peace with this reality. It isn’t the life I would have picked for myself, but it’s my life and I’m going to devote every last breath to changing the world for MBC patients and their families.