CAROLE MOTYCKA

My diagnosis occurred after hiking when I was 42. After a visit to the emergency room for shoulder pain, we found out the situation was much more serious than originally suspected. I was diagnosed with stage IV colon cancer with metastases to the liver.

I am a determined, type A woman and would not settle for that news. I consulted physicians who confirmed the diagnosis and gave the typical six-to-twelve-months-not-a-surgical-candidate death sentence. More determined to seek out advanced forward-thinking research providers, I traveled to The Cleveland Clinic to receive treatment. With new protocols and advanced research, I could take risks with new procedures to possibly rid my body of cancer.

I was selected by a team of physicians and prepared for 12 rounds of chemotherapy to reduce tumor burden with hopes of resection. I told my surgeon, “let’s focus on a date for surgery, my spirit needs it.” After four months of treatment, I had a complete response and some tumors were gone. During this time, I continued to lead my church youth group and took 15 of them on a mission trip in West Virginia. I hiked, climbed, and did all the things I typically enjoyed in my active lifestyle.

In October of 2016, I underwent a resection of my colon, removal of tumors on the left lobe of my liver and hepatic artery, and embolization the right lobe of my liver. Later, my right lobe was removed, and I received a hepatic artery infusion (HAI) pump at The Cleveland Clinic to do “mop up” chemotherapy. From February 2017 to August 2017 I received six treatments directly into my liver to treat the remaining cancer cells. In October 2017, my liver went into failure.

I underwent 17 procedures to try to remain stable. My doctor always reminded me that he always had back up plans in his pocket. I had two drains in my liver to remove toxic bilirubin, but it didn’t help. In November of 2017, I had a liver aneurysm. One day, my doctor sat on the end of my bed and shared the news I didn’t want to hear. He had nothing more in his pocket. I was advised the only option left would be a liver transplant. It would have to come from a living donor under the new research protocol, and I would have to find my own donor. In April 2018, a member of my church congregation gave me his left lobe and saved my life. I received the first liver transplant in the U.S. for a stage IV metastatic colorectal cancer patient at The Cleveland Clinic.

I am more than a cancer patient. I am a survivor. I am a follower of Christ, a mom, adventure seeker, traveler, dog lover, patient educator and advocate, as well as a life-long learner. I have learned that the more we know and understand the more we can advocate for ourselves and one another while providing hope for a cancer-free future. This can be accomplished through research into advanced treatments.

Solid organ transplant and genetic based testing saved my life and my family. As a result of my diagnosis, my children and family all underwent genetic testing. Two of my sons and I have a genetic mutation called Juvenile Polyposis Syndrome (JPS). My children were both identified as carriers, and one had three pre-cancerous lesions in his colon. Now, I work to inform young adults under 45 to ask questions about genetic family history and start a conversation with physicians for necessary testing.

My diagnosis helped me to see the beauty through difficult times and find a new passion to advocate and encourage others. I have established a non-profit called {bloom.} that provides LOVE bags to patients treated at The Cleveland Clinic Taussig Cancer Center. I am working with my transplant physician to bring more opportunities for organ transplant options to the table for colorectal cancer patients. I strive to be a voice for others facing this disease.

I didn’t want cancer, but it helped me focus on the important things. I knocked it down by not allowing it to silence me. The world is crisper, and my path is clear. I cherish every moment I spend with my boys and enjoy even the smallest opportunity to embrace the beauty of life in every way I can. I am blessed by a second chance at life!