Inside the Mind of a Bile Duct Cancer Survivor

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.

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