Diagnosed in 1996 at age 23

The year 2016 marks my 21st year in remission from fibrolamellar hepatocellular carcinoma. There are many moments of that year that replay in my head every day. I remember the moment my doctor told me there was a mass in my abdomen. I was a 23 year old graduate student. I could tell, not by her words, but rather her eyes, her facial expression, her actions, and her last words “is there someone you need to call right now” as she pulled a box of kleenex from her desk and pushed it toward me. I recall staring outside and seeing the sun was shining but wondering why it was suddenly so dark.

Soon after that day my parents and I found ourselves facing a top surgeon in Boston who had, 10 days earlier, completed exploratory surgery on me leaving a 7 inch scar and a lot of questions. His words still echo through my mind on a daily basis, “you have 3­6 months to live, the cancer is everywhere.” When I inquired as to the likelihood of a 1 year survival he thought for a moment and then proceeded to repeat the research he had clearly recently undertaken saying things like “do you realize how miniscule a chance you have of getting this cancer?” He said things like “1 in 5 million” and “less than a hundred cases worldwide in the past 10 years.” He concluded his thoughts with a blunt remark, “the cancer is everywhere, I honestly do not understand how you are sitting in front of me now.”

A darkness had fallen on me as I grappled with coming to terms with this new reality and finding any sort of hope when I had been told there was none to be found. How does anyone come to terms with such dreadful odds? I remember the moment though…the moment I realized hope!. I was in Boston, riding the green line (subway), and looking around me at all the people riding with me. I wondered which of them had fates similar to mine or maybe even worse. Shouldn’t we be able to recognize each other? The face of cancer suddenly was different and I sought to recognize it in other people. I would even look above their heads to see if they had a sign saying “doomed”, like I felt I had one that read “cancer.” Looking around that train car is when I finally understood­ I finally had recognized the face of cancer…and it was me. That word everyone else uses…was suddenly me. At first it frightened me to my core. Then I realized something ­ a hopeful thought. All the research, statistics, facts, and figures my doctor had used to determine my fate ­ I had found the one fact that he was missing. The one variable that he had never calculated into his formulas before, and that variable was me!.In any scientific or mathematical equation or problem if you change just one variable you will come out with a different result. I could be that variable. This was my flicker of hope.

When I thought of the dreadful odds stacked against me, when I heard my doctors talk about options, or lack there of, I could think yes but…you don’t know for certain. This hope was enough to keep me engaged. It inspired me to actively participate in making my equation come out with a different result. It gave me the strength and the desire to seek out a different doctor, one who embraced the philosophy that the most amazing things can be accomplished even when there is no hope at all. To find a doctor who saw me, not as a statistic but as a person. A doctor willing to aggressively go after this cancer through a resection. For me, finding that surgeon was the difference between becoming another statistic and being a 20+ year survivor of FHC. Certainly these years have been filled with many complications from the difficult surgery but I remain cancer free.

Between my fourth and fifth rounds of chemotherapy, my family arranged to take me on a trip of my choosing. I had global sights that were quickly squashed by my doctors so I decided to have an adventure and we went to a dude ranch high in the Rocky Mountains of Colorado called Latigo Ranch. I recall our first day there my mom fell from her horse. Despite her concussion and bruising, being a woman of fortitude, she insisted on riding every day but for only a short while and so she was assigned her own wrangler to take her on those short rides. Every afternoon upon return from my ride she would go on about this nice wrangler Kyle. I joked with her on the fourth day, “Mom, I am here to make peace with my death and you are trying to set me up on a date”.  In 2016 Kyle and I celebrated our 17th wedding anniversary, just days after my 21st “canniversary.”

I often think of that quote that says, “to be a star you must shine your own light and don’t worry about the darkness, for that is when stars shine the brightest.” I like to add, that light of yours need only start with a small flicker of hope. I hope that you can find your flicker of hope.