Feelings of Hopelessness Channeled Into Hopeful Action: Kelli’s MBC Story

October 31, 2016

Kelli Parker shares her story about gaining renewed hope after becoming an advocate and helping others navigate a metastatic breast cancer diagnosis. 

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 (MBC) 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 15 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 (featured in the pictures on this post), 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 me. 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 13, MBC awareness Day. There were 200 people marching including many of our MBC friends and Academy Award-winning actress Mira Sorvino. METAvivor was also JUST included in the Cancer Moonshot program led by Vice President Joe Biden. 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. 

Learn more about coping with a metastatic breast cancer diagnosis.

Comments

I just want to thank you for letting me in to your private struggles. It made me feel that I am not alone in my struggle with my new diagnosis of MBC. I feel as though I have just been handed my death sentence for something I had no control over. Please keep up the good work & I pray I am still around to see some of that change your working so hard for. Thank you again, your an Angel.

I just want to thank you for letting me in to your private struggles. It made me feel that I am not alone in my struggle with my new diagnosis of MBC. I feel as though I have just been handed my death sentence for something I had no control over. Please keep up the good work & I pray I am still around to see some of that change your working so hard for. Thank you again, your an Angel.

Thank you Kelli for all you are doing! Keep it up we need more motivated inspirational people like you spreading hope. I was initially handed a metastatic breast cancer diagnosis at 36 back in 2007. I have been trying to discover what I can do to help breast cancer patients navigate healthcare and it's options. I have learned a lot and would enjoy passing it along. I just don't know where yet or how yet to put that perverbial foot in the door. after reading your story there is no doubt in my mind I will find that door.

I hope you can answer a question for me. My daughter was diagnosed in 2014 with bone metastasis after a bilateral mastectomy in 2012. The spine and rib lesions have slowly progressed after three lines of endocrine therapy including palbociclib. The disease is progressing and all that remains is more chemotherapy. We have spent incredible amounts of time looking for clinical trials only to learn that bone mets alone is not considered "measurable disease" by RECIST and therefore is not eligible for most of the drug trials. While there is much written about metastatic disease no where in any of the literature we reviewed from any of the cancer foundations is the ineligibility of bony disease explained. Why is this not addressed by the cancer community? It would have saved us hours of self education and made our research much more productive.

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