Champion Story: Carole Motyka

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Champion Stories
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As I look back and reflect on my survivor story, it is sometimes unbelievable to considerer it began over 4 decades ago when I was just a small infant, failing to thrive and diagnosed with a heart defect; one that required open heart surgery when I was just 4 ½ years old. This life-saving surgery occurred in 1979, just two short months after the sudden and tragic death of my father in a car accident in an early January snowstorm.  Little did we know at that time the death of my father, and the loss of family medical history information along with it, would certainly make lasting impacts on my life far beyond my reach of understanding.

Fast forward 37 years later to 2016. A big jump, I know, but life was seemingly fabulous up until that day: April 9, 2016. I had all the things checked off. College, marriage, I was a mom, I was the youth director at my church, life was good.  My little boys had grown up and I was settling into a new pace of life with “adult” children, traveling, exploring, backpacking in the outdoors, and spending newfound free time at the lake. Life was a dream; I was 42 years old, in the best shape of my life and looking forward to seeing my first son graduate from college and another head off to Dartmouth to begin his freshman year. 

It was on that day after a 17-mile hike that a trip to the ER for excruciating shoulder pain led to a diagnosis beyond what I could comprehend at the time. I was diagnosed that day with stage IV advanced colorectal cancer. A punch in the gut. My seemingly perfect life blew up and I was thrust into survivalist mode! Some might better describe it as a crap shoot, or a crash course in living or dying. On that day, I decided dying was not an option.

I was fortunate enough, being from Ohio, to have access to world class care at the Cleveland Clinic. I immediately sought out a care team there. Under the direction of then Dr. Robert Pelley, we put in place a plan to take a seemingly dismal diagnosis of six months to live and transfer it to living against all odds. The multidisciplinary team built at the Clinic allowed me access to world-class physicians, surgeons, and medical teams and cutting-edge treatment plans and perspectives, patient-centric care, and genetic testing opportunities.

It was through the genetic testing at the Cleveland Clinic it was discovered I have inherited mutation that is a predisposition to CRC called Juvenile Polyposis. It is a defect that occurs in a mutation of the BMPR1A or SMAD4 gene.  In my case it was the BMPR1A gene, a paternal link was determined after genetic screening of other family members. The death of my father in 1979 left a void, medically, that I was able to fill. My children and other family members have since been screened and many carry the same mutation. My sons are carriers and one is a pre-vivor. They all undergo screening yearly through EGD and colonoscopies to ensure any polyps are removed before turning into a cancer. Thankfully, they have been spared from a dreadful diagnosis through genetic testing and screening access. I like to say KNOW IT, SCREEN IT, BEAT IT! That’s right….Mom 1, Cancer 0!

In October 2016, I had successfully completed 12 rounds of systemic chemo. I made it to surgery through grit and determination, but I certainly was not out of the woods. I had championed my way with my remarkable team supporting me to my first goal: surgical resection of tumors in the colon and liver. Through the next two years I faced many more surgeries and a chemo pump was placed to treat lingering cancer cells that might have developed. Everything was progressing along nicely until late October 2017 when biliary damage occurred and, as a result, liver failure. My organs had enough and I was yet again faced with a life-or-death situation, as without healthy organs treatment options were limited. 

The Cleveland Clinic, under the direction of Dr. Federico Aucejo, was at that time exploring new opportunities in hard organ transplant for a small subset of colorectal cancer patients. To survive, I would need a living donor liver transplant. The odds were stacked against me, but in true champion spirit I fought on. We found a donor and on April 23, 2018, I became one of the first to transplant with a living donor after a terminal colorectal cancer diagnosis. So, there you have it, bottom line: I SURVIVED!

Today I am doing well and have returned to all the activities and events I was participating in prior to my diagnosis. I have found a new season of life where the landscape and path are even more crisp, each moment is a treasure, and life is certainly good today.

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