The day cancer took me from anticipation to devastation — and then we danced


Tom Marsilje and his daughters

“CT scan of the abdomen shows the patient to have multiple bilateral, too numerous to count, liver lesions consistent with widespread liver metastases.”

My jaw dropped as I read the report. My vision blurred. The world before my eyes spun and came to a standstill. Reeling, I fumbled for a bench outside near a sign which proclaimed, “There is Always Hope.”
I had woken up feeling laid-back, looking forward to the father-daughter school dance that evening.

I had a CT-scan the day before, the final requirement to enter my planned immunotherapy clinical trial, but didn’t worry about it. My disease — metastatic colon cancer — has been slow growing and predictable for five years.

No more.

I learned that my liver had exploded with new tumors. Too many to count. Some quite large. I knew what this meant. A much more aggressive disease in an essential organ – the type of situation that screamed, life-threatening. Near-term life threatening.

My oncologist and I reviewed the images together. My liver looked like Swiss cheese covered in large spots, including a few that were dangerously circling around my biliary duct. If they grew just a bit more and blocked that duct, an emergency stent operation would be needed. If that didn’t work … Game over.

All at once, I had gone from excited newcomer to a clinical trial of an exciting immunotherapy, to a possible game-over.

Welcome to the crazy rollercoaster world of Stage IV cancer. A world where you are constantly being scanned, each new scan a game of Russian roulette. This is why “scanxiety” is very real. My entire life changed with this single scan.

Even before my oncologist spoke, I had already come to the same conclusion: Immunotherapies are slow, chemotherapy is fast. Stop the clinical trial. Get on chemotherapy that very day.

I had no time to lose.

I was disappointed by the clinical trial being abruptly postponed until my liver is under control. Yet even more, I felt determined ready to fight for my life by any means necessary.

As a Stage IV patient you learn to react to new data on a dime. I was in that chemotherapy infusion room to save my life, get my liver ready for a future clinical trial and fight on.

Further battle hardened and ready to take that homerun swing.

Yes, I did make it to that father-daughter dance. We had a great time.

There is always hope.

2016 Colondar 2.0 featured survivor Dr. Tom Marsilje (known on Colon Talk as DK37) is a 20-year oncology drug discovery scientist with “currently incurable” stage IV colon cancer. He also writes a personal blog on life at the intersection of being both a cancer patient and researcher “Adventures in Living Terminally Optimistic,” a science column for Fight Colorectal Cancer “The Currently Incurable Scientist”, and posts science and advocacy updates to Twitter@CurrentIncurSci. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over a million patients and caregivers.

This article originally published on Philly.com.