Lisa Craine

I’ve spent 14 years navigating recovery, mental health challenges and giving back to the cancer community through patient mentorship.

I remember the day in 2010 vividly, sitting with our son at his gastroenterology appointment and having the doctor tell me I looked tired. Now, mind you, he was a family friend and knew me well. I’m thankful for his persistent questions of why I was tired and if I had any pain. A minor tenderness under my right breast was my only thought, and I had recently had a mammogram and was diagnosed with costochondritis, a type of inflammation and really not a big deal. I assured our friend and doctor that I was fine and that I was tired because of being a working mom and wife. He suspected a gallbladder issue and scheduled an abdominal ultrasound for the next day. I was annoyed because this was utterly ridiculous; I was fine, and the test would show that.

The test was not fine, and it revealed a mass occupying over 75% of my liver. I was assured that it was benign, but it would need to be removed. This is where the journey began in my mind. My first thoughts were not of cancer but of surgery and recovery that frankly did not fit into my busy life; what an inconvenience. The first specialist I saw said he thought this was cancer and that I had six months to live; how could this be? How could I go from benign to cancer without a biopsy? The wheels in my head started turning, and all of a sudden, my mortality was in question. Was I going to live or die? Would my husband have to raise our boys alone? Would I see graduations, weddings and grandchildren? This is not how our love story was supposed to play out, at least not how I played it out in my head with us sitting on a beach with our grandchildren growing old together.

A second opinion, which I recommend for everyone, confirmed cholangiocarcinoma, a rare and aggressive bile duct cancer with dismal survival rates and limited treatment options. This was the day that my physical condition married my brain; the two joined in a love-hate relationship. My body felt fine, but my mind told me I was dying. For the first time in my life, I felt totally out of control, and my thoughts were running wild with visions of death, pain and suffering, children being raised without their mothers, a husband without his wife and me feeling like I would fade away like I never lived. I would be forgotten, just another cancer statistic, not a person.

As I was waiting to be taken back for an 11-and-a-half-hour surgery to remove over 75% of my liver, the vision in my head was that of the doll on the island of misfit toys in “Rudolph the Red-Nosed Reindeer.” She looked normal on the outside, but her emotional health was jeopardized by loneliness and sadness. How could I be surrounded by so many people who loved me, yet feel so alone? I had always been a very joyful person and never struggled with any emotional issues, so this was all new, and it made me feel broken.

The surgery was successful, but the recovery was long. During my recovery from surgery and before chemotherapy started, I felt so grateful and alive. My body and my mind were happy together; they were functioning in unison. I prayed this would continue as I started to realize that cancer is more than a physical disease; it affects the mind, soul, and body.

My journey continued with five recurrences and a total of eight tumors. Many surgeries, different chemotherapy regimens, and multiple radiation treatments. I’ve learned that it is just as important to take care of our mind as well as our body during crises in our life. For me, improving my mental health came with the opportunity to serve other cholangiocarcinoma patients. I volunteer as a patient mentor and research advocate. I am so thankful to the over 1,000 patients I have mentored because they have given me more than I could have ever given them. They have helped my mind heal. The ability to support and love others is a gift that is healing on both sides. My joy comes from building relationships with the most wonderful cancer community and helping patients navigate this bumpy terrain called cancer.

Survivorship comes with its ups and downs. It’s been 14 years, and some of the treatments have left me with some permanent disabilities, but my thoughts are of gratitude for these disabilities because they are not life-threatening. My mind still wanders to dark places as scan time approaches or an unusual pain makes me wonder if the cancer is back, but my perspective has changed, and it has improved my thoughts. Spending every day talking about cancer can be daunting and sad, and loss is inevitable and gut-wrenching, but I never want a patient to feel alone. I’m blessed to be alive. I’m blessed to be able to serve others. I’m blessed to have another cancer-free day. I’m blessed that my mind and body continue to dance harmoniously with a joyful step.

For more news on cancer updates, research and education,

don’t forget to subscribe to CURE®’s newsletters here.

Articles

A routine medical appointment led to the discovery of a liver mass, initially thought benign but later diagnosed as cholangiocarcinoma, a rare bile duct cancer. The patient underwent extensive surgery and multiple treatments, experiencing both physical and emotional challenges. Despite the aggressive nature of the disease and its recurrences, the patient found solace and healing through mentoring others with the same condition. This journey highlights the importance of mental health alongside physical treatment, emphasizing gratitude and the power of community support in navigating cancer survivorship.

Inside the Mind of a Bile Duct Cancer Survivor 

Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group.

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, 

 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!

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, 

 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.

Lisa Craine

Inside the Mind of a Bile Duct Cancer Survivor

My Story with Cholangiocarcinoma

Latest News