Diagnosed in November 2018 at 24 years old
My name is Mark Carles and I live in Staten Island, NY. I am an avid runner, foodie (but restricted to certain foods since surgery), and media artist. I graduated from Hunter College in the Spring of 2017 and went on to pursue my master’s in Integrated Media Arts the following autumn. After a few years of discomfort and misdiagnosis’, I was diagnosed with Fibrolamellar during the Fall semester of 2018.
I was at the top of my game–running daily, attending graduate school at night, and two part-time jobs; interning for Dan Rather at Rockefeller Center and archiving almost a hundred year’s worth of performances at The Town Hall located in midtown Manhattan. I was on a great track towards success when one day I could not take the pain anymore. I was experiencing bloody noses, stomach aches, and acid reflux for a few years, but on October 25th, 2018 I awoke with a sharp pain in my lower right side. I went off to work, complained about the discomfort I was in and they sent me out early. I had a midterm that night so I just went to school and sat in a bathroom stall and passed out from the pain for a little while. I went in for my midterm and then had my father pick me up from school and schedule me an appointment at our general practitioner the following morning.
The doctor saw me for 30 odd seconds before telling me to stop flexing my stomach. I told him I wasn’t. “We are looking at a tumor.” The next week was spent in a local hospital where I was told I was going to die. It was a tough time after that going to different hospitals looking for doctors that could do something. Many surgeons denied my stage-4 sentence, so I chose the chemotherapy route of the cocktail GemOx. Two months later I was 20-pounds lighter and told the chemotherapy had failed to arrest the tumor.
In the duration of those two months, my brother had researched and contacted New York Presbyterian’s Dr. Tomoaki Kato for a consultation of my situation. Dr. Kato agreed to do surgery. There was a chance. On February 27th, 2019 I went under the knife–a 16-hour and 16-pints of O+ blood operation. I woke up not myself, but I woke up. I was missing 70 percent of my liver, my gallbladder, the head of the pancreas, top of small intestines, and part of the stomach. I got the resection as well as a hell of a whipple. I have not enjoyed food the same ever since.
After a month in the hospital where I celebrated my 25th birthday and gained some strength back, I couldn’t wait to start running again. It took about till June of that year to get up to 3 miles. I get exhausted from the run but I am happy. I also am assistant coaching at a local high school in Staten Island. That is how I have been spending my days.
I have yet to make a decision about where I want to go with my life; if I will go back to school for media or if I want to pursue something else is all up in the air. I have three nodules in my lungs, a spot on my pelvis, and some lymph nodes that I will have to deal with this upcoming Fall, but the treatment is to be determined as of now. In the meantime I will be beating runners in perfect health at my local 5k every Saturday.