Living with stage IV liver cancer

November 6, 2020
By Marie Allen-Hadge

I don’t think the day you are diagnosed with a terminal disease is ever erased from memory.

I remember going to the emergency room on May 31, 2019, with severe abdominal, shoulder, and back pain. After an ultrasound, lots of whispering nurses and doctors, and hours of waiting for results, I was admitted and told that there appeared to be a mass on my liver, but since it was a Friday night, we wouldn’t know more until the following Monday.

That day, the biopsy came back showing primary hepatocellular carcinoma (HCC), a liver cancer; the scans confirmed it had metastasized to my lungs. I remember so vividly when Dr. Alexandra Bailey came into my room and told my husband and I that my biopsy results showed stage IV liver cancer. When she left, I looked at my husband, who was standing by my bedside holding me, and we both broke into tears. My feelings of physical pain and frustration quickly transformed into feelings of shock, fear, confusion, and mortality.

My treatment at Dana-Farber Cancer Institute’s location in Milford, Mass., started immediately.  I was not a candidate for surgery or local radiation as the disease was too advanced, so we started chemotherapy, which was a very challenging regimen for me—physically, mentally, and spiritually. I could not eat, drink, lift my head or walk, and I was losing weight at a dangerous rate. Every muscle and bone in my body was painful and I had a full body rash. I felt like the medication was killing me. I worried whether I would live to see our daughter graduate high school. Will my son’s daughters remember their Mimi? I was not ready to leave yet!

That’s when Dr. Bailey and my team suggested an immunotherapy treatment called Nivolumab (Opdivo®). I was familiar with the medication; prior to my diagnosis, I had worked at a Cambridge biotech company, where we were entering a phase I trial using this drug. It was a new treatment for my disease and had been successful in less than 20 percent of patients, but it was so much gentler on my system and provided me with a sense of hope.

I wanted to take an active role in my own healing. I explored integrative health options, including yoga and qigong in Dana-Farber’s Leonard P. Zakim Center for Integrative Therapies and Healthy Living; met with social workers; and engaged in daily meditation and journaling. I changed my diet to focus on fresh, organic fruits and vegetables, and tried acupuncture for the first time.

Six months after my diagnosis, a PET scan showed the immunotherapy was working. There were reductions in my primary liver tumor, as well as in the spots in my lungs. I was thrilled—and determined to keep going in the right direction.

Today, at 58, I consider myself “young and retired” (not disabled), and I no longer have long to-do lists taking over my life, like they were before cancer. Although COVID-19 has certainly kept us more isolated than normal, I spend time with my family and friends (either socially distant or virtually); we go for nice long walks in nature, hike mountains, bake apple pies, paint pictures, play games, simply enjoy each other’s company.  Last June, when I was given my dreadful diagnosis, we had just dug the foundation for a new house on a small lake. We were devastated and stopped the construction immediately for fear of my life. I’m happy to say that I’m no longer living in survival mode. This year, we decided to move forward with building and we should be moving into our beautiful little bungalow in the springtime. I have so much life to look forward to!

Although I’m not cured, I will never consider myself a statistic. I continue with my labs, scans, and immunotherapy infusions every four weeks. I will always be living with cancer, but my journey thus far has led to immense healing and so many blessings.  If I can help one other person feel inspired or make their day a bit brighter, that means the world to me.