My survival story starts in mid-2018 while I was a caregiver for my mom who was battling metastatic lung cancer. I had some significant GI symptoms which I ignored assuming they were stress related. I did the same when I developed horrible right neck, shoulder, and arm pain.
In early 2019, I finally broke down and talked to my primary care doctor about the pain after seeing a chiropractor and being unable to get any relief. My doctor felt “fullness” in my neck area and ordered an ultrasound, from there things spiraled into one test after another.
The ultrasound found swollen lymph nodes and lung lesions. This then led to a CT scan which found “innumerable” lung lesions and two large liver masses with satellite masses. After a PET scan indicated potential cancer, they did a liver biopsy.
Almost a year to the day we lost Mom, I was diagnosed with Hepaticellular Carcinoma. I sat on the results for a while, not sure how to tell my family that at 53, I had less than a year to live. I couldn’t really grasp it as I’m a single Mother and my child was 17 and heading into her Senior Year.
Once I told my family I planned a “goodbye” trip to see family and friends in my home state. One was a nurse and asked to share my results with a peer as something wasn’t registering with her. Once her peer looked at the results, he immediately realized I had been misdiagnosed and I actually had Cholangiocarcinoma, which is normally highly aggressive and requires immediate treatment.
The first oncologist I saw had referred me to Siteman Cancer Center in St. Louis and this is what saved my life. Although I was inoperable as the cancer had spread to my lungs, my lymph nodes and bones, I have been fortunate enough to participate in four clinical trials that have given me over three years of life, memories and time with loved ones.
I’m sharing my story in the hopes that it spurs someone who might be experiencing unusual symptoms to seek answers earlier than I did. I’m also sharing my story to give hope to anyone fighting this beast. I was originally given 6 to 12 months to live and I’m now on month 40 since my diagnosis and month 36 of treatment.