When his cancer grows more sinister, he fights back - and waits for news

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Cancer scientist/patient/writer Tom Marsilje in a recent portrait.

The news entered my life with a screaming thud.  A shot out of the dark, completely unexpected.

The disease I had come to know intimately since 2012 -- my laid-back, slow-growing, Stage IV colorectal cancer ­-- was no more.  In its place was something far more dangerous and sinister: a fast growing, aggressive disease out to kill me as soon as it could.

Five years is a long time to have what I thought of as “currently incurable” cancer. In that time, I was almost entirely symptom free. If I felt anything it was due to treatment side effects, not the disease itself.

I had scans every few months.  In some scans the cancer retreated a bit (woo-hoo!).  More often, the cancer slowly moved forward a bit (doh!).  But it was so slow and symptom-free, it felt more like one of my scientific experiments than a life-threatening situation.

My February scan, coming together with a major increase in disease symptoms, changed all that.

The disease was now real to me and my entire family.

We went into emergency mode.  I worked around the clock to call in every favor I could think of, calling contacts from my years as a cancer scientist.  I set up a consult with a top colorectal cancer oncologist who is a liver specialist at the renowned Memorial Sloan-Kettering Cancer Center in New York City. Through teary-eyed pain, I made the cross-country flight.  Treatment plans were changed and flowcharts were set up to follow along, changing as we saw (or didn’t see) results.

My entire family sprang into action to help and support me.

And then we entered the wait.

That is an amazing part of Stage IV life.  There are periods of intense action – life-and-death-level action – and once plans are lined up and in motion, you… wait.

Are my new treatments (a mixture of standard of care plus self-designed immunotherapy) working?  We’ll find out in April when the next CT scan is taken.  My clinical signs of disease are almost all better. Although those signs are welcome, they do not replace the objectivity of a scan.

Until that scan, life has returned to a sense of “new normalcy”.  But my sense of cancer innocence has been forever lost. I remain on life-threatened edge, newly formed battle plans at the ready.  Prepared to spring into life-saving action as soon as that scan result is obtained.

Cancer lulled me into a sense of complacency over a long five years.  Never again.  I am now fully at the ready.

But for now …. I wait.

Tom Marsilje, Ph.D., 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 more than one million patients and caregivers.


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