TOM MARSILJE

Life is a roller coaster ride — full of ups and downs. It can be a wild one at times, oscillating between highs and lows from one moment to the next. But it’s doubtful that many people have had a day like the one Tom had on June 4, 2012.

Tom’s craft is medicinal chemistry and his job is to invent cancer drugs, of all things. On that June morning, the clinical results of a lung cancer drug that Tom had co-invented were announced at the prestigious American Society of Clinical Oncology conference. The results were quite positive (the FDA has since approved the drug), and Tom was ecstatic.

Tom has a personal vendetta against cancer and has pursued his foe with nothing less than a laser-like focus throughout his career. Growing up, cancer struck several of his relatives, and in graduate school, his mom was unexpectedly diagnosed with pancreatic cancer when she was only 54. Tom and his sister were her end-of-life caregivers until she passed away 13 short months later, and this caregiver experience was a life-altering event for him. Tom felt tremendous pride in having finally struck a blow against cancer — it was truly a dream come true.

But cancer quickly threw a counterpunch. As fate would have it, Tom had a colonoscopy scheduled for later that same day. While coming out of anesthesia, he overheard his doctor tell his wife, “He has colon cancer and we need to schedule emergency surgery.” Tom went numb. In just a few short hours, the roller coaster ride had gone into freefall — one of the best days of his life had just turned into one of the worst.

Tom underwent a colonoscopy because of steadily worsening symptoms that first appeared 10 months earlier. They began as digestive problems, which Tom unsuccessfully tried to fix with dietary changes. He went to see his doctor several months later, but no diagnosis was made. No internal examination was performed as cancer was not on Tom or his doctor’s mind. After another few months, Tom began experiencing “pencil poops” as the tumor that was growing unchecked in his colon began to block more and more of his large intestine. Tom eventually went to see a gastroenterologist, who recognized the colorectal cancer warning signs and scheduled an immediate colonoscopy. Even as a Ph.D. cancer researcher, Tom was misled by the symptoms due

to his age. To this day, he wonders if his cancer could have been caught at a more treatable earlier stage if he had known more about early-onset colorectal cancer.

Tom had surgery two days later to remove the tumor, which turned out to be stage IIIC colon cancer, and began the grind of six months of chemotherapy. Tom came out of treatment feeling that cancer had been a warning shot across the bow and prioritized what was important in life — his family, faith and health. He put his wife, Veronica, and his young daughters Amelie and Eleni first, returned to Christianity, took up long-distance running, and ate an ultra-healthy diet.

Tom thought he had beaten cancer, but the beast once again reared its ugly head when a follow-up scan eight months after treatment showed several enlarged lymph nodes and several lung spots. He was officially diagnosed with stage IV colon cancer almost a year later after additional scans showed the spots were slowly growing.

The lung spots are still there today, but they are no longer growing and Tom continues to live life as a stage IV colon cancer survivor. Tom knows that the chemotherapy he is undergoing will not cure him of stage IV cancer — it is only managing the disease. Controlling it. Buying him time. And in Tom’s mind, that’s all he needs — time. He calls his cancer a “currently incurable” cancer. As a cancer researcher, he is excited by the promise that cancer immunotherapy holds. He tells his wife that with all of the resources backing immunotherapy research, he guarantees that there will be a cure for colon cancer in her lifetime, and hopefully in his.

Tom has also become an earnest advocate for the cause. As a cancer survivor and a cancer researcher, he realizes that he has a unique perspective on the cancer experience and wants to share his story. Tom began a blog in January 2015 (Adventures in Living Terminally Optimistic), which he uses as a platform to provide a survivor’s perspective to researchers as well as a researcher’s perspective to inspire fellow survivors. He also uses it to spread his message of hope as treatment options advance. The blog has been well received with thousands of monthly hits from a global audience. He has presented his unique perspective in person to multiple audiences around the world, receiving standing ovations. More recently, Fight Colorectal Cancer has invited Tom to write a blog (The Currently Incurable Scientist) to share his distinctive insights on new therapies being developed for colorectal cancer.

Tom has no symptoms and is living life to the fullest. He is keeping himself very busy with his roles as husband, father, researcher and advocate until the cancer immunotherapy cavalry arrives. After all, with advances moving fast, he feels he is in the right place at the right time. He has seen others with “currently incurable” cancers survive long enough to see their cancer go into remission, so why not him?

UPDATE:  We are sad to share that Tom passed away on November 14, 2017.  His legacy lives on in the Late-Stage, MSS-CRC Clinical Trial Finder.