Choosing Chemo Because I Want to Live

Catalina Lulley

• After a stage IV diagnosis, switching doctors for better treatment
• Chemo halts the cancer for a time
• Treatment with FOLFIRINOX after a recurrence

I was diagnosed with pancreatic cancer in July 2018.

I am from the island of Bequia, in St. Vincent and the Grenadines, where I owned and managed a general merchandise store for 20 years. I came to the USA in 2014, to care for my mom when she broke her hip.

In March of 2018, I began having severe pain in my abdomen and back that had me doubled over. I assumed it was from taking care of my mom. But for the next three months, I continued to have chronic pain in my abdomen. During that time, I had one endoscopy, one colonoscopy, gave stool samples, had a biopsy, embolization of a bleeding artery, multiple blood transfusions, and other medical treatments that I don’t even want to remember, as well as numerous other scans. The doctors I saw kept insisting I was anemic, but I was sure it was something else. I kept pushing them to do more testing.

Finally, in July of 2018, two things happened. My mom passed away, and I was given a PET scan, which revealed tumors on my pancreas and liver. I thought I was done, that it was a death sentence. I thought this was going to be the end of my life. But my family and friends told me to be strong.

Finding a Better Doctor

I found a local oncologist and did two rounds of chemo with him but nothing was going right. I kept needing transfusions.

I contacted a doctor I have known for a very long time, Dr. David Woolsey of the Jackson Memorial Hospital in Miami, and he told me to get down there. He introduced me to Dr. Peter Hosein at Sylvester Cancer Center, who took over my care. I had an embolization to stop bleeding, and he ordered 12 months of chemo to shrink the tumors. By July 2019, the cancer shrunk enough for me to redo the PET scan, which was clean! Even though I did not have a mutation, Dr. Hosein wanted to try me on Lynparza, but it did not work.

In November I began to notice something wrong with me. I went to the ER in December, where the doctors thought I had a kidney stone. But a PET scan showed the cancer was back. So, in January Dr. Hosein started me on FOLFIRINOX for seven more months. Before I began the chemo, Dr. Hosein reassured me that we had this. In June 2020, my PET scan came back clean, but I still continue chemo.

Coping With Treatment and Side Effects

During my time in treatment, I have tried to follow my regular routine as much as possible. I have spent a lot of time with my grandsons, and I even took a few short trips. Even when I was too weak, I still did the usual things I do in life. It was important to me that I do my daily activities and not stop my life.

I lost about 40 pounds during treatment and was also hooked up to a chemo machine at certain times, but I continued to do what I could. I made my grandsons laugh because I call the chemo pump I have to wear “my husband” and the port “my baby.” My grandsons give me strength—l look at my boys and know that I want to see them grow up.

Because of the cancer I have changed my diet and my lifestyle, so I am healthier now.

My biggest problem has been neuropathy in my feet. The damaged nerves makes it feel like there is a flame on my feet. I have found that CBD oil helps my feet, as well as hot water. Dr. Hosein took me off the oxaliplatin for a while, which helped. And I would rather have numb feet than cancer!

Life on Maintenance

My cancer is stable now, but I have to stay on chemo to maintain. I am back on the oxaliplatin because my CA 19-9 went up a little. I prefer to focus on scans rather than CA 19-9 numbers, because it will drive you crazy.

Terri Pollock, Dr. Hosein’s right hand, and the rest of his staff are great. They have been very helpful. My family and friends call every day with encouragement to me. But I am lonely at times because many of them are back in the Caribbean.

I never say I have cancer—I say I was diagnosed with cancer, because there is a difference. I am a stronger person and have learned how to let go of the small things. I am not going to give up. I put my trust in my doctors and God.

I say that my story is TO BE CONTINUED.

A year after sharing her story with Let’s Win, Catalina passed away. She survived three years after her diagnosis, much longer than her original prognosis. She made sure to enjoy that time with her family. We offer our deepest condolences to her family.