My Story with Cholangiocarcinoma

by LISA CRAINE

The word “cholangiocarcinoma” changed our lives forever, and I say “our” lives because cancer is not an individual diagnosis. Cancer instilled a heightened sense of fear in our family, and it created a lot of anxiety of the unknown. My first thought was, What would my family do without me? I wanted my children to have a normal life, and I didn’t want them to worry on a daily basis if their mother was going to live or die. I wanted my husband to have a healthy and vibrant wife, but instead I felt like he had damaged goods.

The year 2010 was busy with work, volunteer work, board work, being a mom, being a wife and getting a child ready to send off to college. I didn't have time for cancer, but as we all know it doesn't take applications. I was diagnosed with stage 4 intrahepatic cholangiocarcinoma in 2010, and I was given six months to live. Looking back over the last six years, I reflect on the thought that cancer is not a blessing, but many blessings presented themselves during the rough ride, blessings in the way of all the beautiful friends I have made with the same cancer, and the blessing for the appreciation of life. In the beginning, my husband taught me to thank God for today, and to ask Him for tomorrow.

Cholangiocarcinoma is a rare bile duct cancer in the liver. The average life expectancy is not very long. My second opinion at the Cleveland Clinic with Dr. John Fung was a meeting of hope and compassion. My first surgery was eleven-and-a-half hours, and I received 14 units of blood, the surgeon removed 75 percent of my liver, and I was critical for the first week in ICU. I started six months of chemotherapy, and upon completion I thought, I am done with this cancer, end of story!

Cancer had a different idea.

Ten weeks later, I had my first recurrence. I had my second surgery removing 35 percent of my liver during an eight-and-a-half hour surgery, followed up by another six months of chemotherapy. This time I thought, Okay God, I'm really done now, right? My second recurrence occurred several months later, and I started my third chemotherapy regimen, which was unsuccessful, and the tumors grew. The fourth chemotherapy was introduced, and it was also unsuccessful. My treatment then turned to a type of radiation called SBRT and we used this treatment for several more recurrences.

My journey included five recurrences with eight tumors, over 30 hours of surgery, 52 chemotherapy treatments and many radiation sessions. My diagnosis in 2010 made me think, How I could turn something so devastating into something hopeful and positive? I did not want cancer to be my identifier, and I did not like the word cholangiocarcinoma; I wanted something pretty, so instead I have CC aka Coco Chanel.

We came up with three ideas, and we have implemented all of them. First, I knew that faith played a strong role in my life, and I knew that I needed to rely on my faith to get through this. I decided to increase my faith, and hopefully share my faith with others, helping them strengthen or return to their faith. Next, because this cancer is so rare, there was very little research and clinical trials. Our family started Craine's Cholangiocarcinoma Crew, a 501c3 that raises funds for research on bile duct cancers. Together, we have raised over $100K, and we have granted money to a genomic research project at the Cleveland Clinic the last two years. Finally, I wanted to become a mentor for other people battling the same cancer. Mentoring has become my passion. Currently, I have more than 30 survivors for whom I am a mentor from across the country. I have mentored over 100 patients through the Scott Hamilton 4th Angel program, and also through various other organizations.

My goal is to give others hope through love, knowledge and prayer. The most important piece of advice I give patients is the minute your doctor take your hope away, find a new doctor. I am studying to be a research advocate so I can help patients navigate clinical trials, find second and third opinions and find the best possible treatment options. I attended the American Society of Clinical Oncology (ASCO) Annual Meeting this year as a research advocate. I had a researcher ask me what I thought was the most important thing I did for the people I mentored. I told him I provide compassion, love, hope and prayers. When he asked me a second time, I repeated myself. Healing needs to be physical, spiritual and mental. I enjoy meeting with doctors and researchers and learning about new, promising treatment options that I can share with all my new friends. I sit on the Voice of the Patient Advocacy Council at the Cleveland Clinic because I feel it is so important for the voice of the patient to be heard. I truly love my new “normal,” and I love that I can make an impact by providing compassion, love, hope and prayers for others

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