Living with stage IV cancer: I've never felt more alive

Solstice Party_4
The author shows what it's like to live a "cannonball life" at his recent Solstice Party. Photo by Judy Alvara

In the summer of 2012 I was first diagnosed with colorectal cancer (CRC).  Like more and more people diagnosed with CRC in recent years, I was young, below the screening age.  The diagnosis lead to a lost summer. Vacation trips were canceled.  Emergency surgery was scheduled.  A central port was installed to allow the harshest and highest dose chemotherapy possible to flood my body.  A frantic rush began to start chemotherapy as soon as possible. That is how my new life as a cancer survivor began.

I remember one of the few times I went to the beach that summer.  Mentally and emotionally I felt very isolated, even in the crowds. I hid my central port with my towel like it was a cancer patient’s scarlet letter.  I didn’t want to be different.  I didn’t want to be the only person I knew with cancer.  I didn’t want to admit I had cancer.  Cautiously, I attempted to enter the surf, not wanting to set off chemotherapy neuropathy.  In hindsight, I think I was acting how I expected a cancer patient to act.  My mind was preoccupied with worry, even at the beach wondering whether the chemotherapy would do its job to remove the cancer from my body – my 30% chance of a cure.

What a difference four years makes.

Did my chemotherapy give me that 30% cure?  No, it did not.  I’m now one of the millions of people in the world living long-term with currently incurable Stage IV cancer.  I like the “long-term” part of that sentence.  The “currently incurable” part? Well, we’re working on that.  How have things changed from that first summer? Probably in ways you would not expect.

I’m having the most fun I have ever had in my entire life.

My prognosis is now worse than in 2012 but my panic is gone.  It’s really hard to stay panicked for four years straight. Hiding my central port like a scarlet letter doesn’t happen anymore – instead, my open writings as a cancer patient-scientist-advocate have been read by over a million people worldwide.  I may not have an official 30% chance of cure like I did in the summer of 2012 but I’m working hard to bring those odds back!

I think there are outdated stereotypes of what a Stage IV patient looks like, especially as many of us now live years after our diagnosis due to the recent explosion in improved medicines.  Which person in the picture looks currently incurable, bumping into the statistics of a cancer survival curve?  In my case, long-term currently incurable cancer liberated me to do the unexpected.  It allowed me to not be afraid to cause some waves. It led me to embrace life as never before.  Ironically as I hear the ticking clock of my prognosis, in some ways I never felt more alive.

I thought of that as we had our Solstice Party a few days ago. Without 2012-style hiding of my central port, I rushed to do something that I haven’t done for years.  I looked forward to jumping for joy, embracing life and making some waves.

There are few things as fun and satisfying as leading a cannonball life.

Dr. Tom Marsilje 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 800,000 patients and caregivers.


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