In January 2022, I noticed a small bump on my arm. I thought it was maybe a bug bite or just one of those things that comes with getting older, but it kept growing. My doctor was able to see me in February, and I could see she was concerned. She ruled out my ill-formed theories and set up a surgical consult.

She didn’t know what it was, but she knew it needed to come out. A month later, my bump now the size of a large grape was removed and sent off for testing.

A few days later, sitting in the parking lot of a big box store, I heard my phone ding. My results were in. Four words leapt off the screen, “Positive” and “Merkel Cell Carcinoma.” I began searching the web for more information on the diagnosis, and like many, was horrified by what I found. I had a very rare very aggressive cancer, with a five-year survival rate of less than 50%.

Sitting there in utter shock and disbelief, the open wound on my arm throbbing, it hit me: the next five years were anything but guaranteed. There were a lot of life events I had just assumed would happen that had just become anything but certain.

In March, I underwent another surgery to clean out the margins of the initial surgical site. We established care, and by April, I was receiving regular immunotherapy treatments. We were inching our feet back from the edge.

Or so we thought.

My July scans and bloodwork revealed my treatments had not worked. My MCC had progressed from Stage II to Stage IV. My wife and I sat in my oncologist’s office coming to terms with the news and laid out a plan we came to call “The Kitchen Sink.” We moved to a more aggressive immunotherapy regiment. I underwent a 10 hour surgery (hyperthermic limb perfusion) and followed that up with a month of radiation.

These were the dark days of treatment. I was in a lot of pain, exhausted, and anticipating more bad news the next time they poked me for more blood and slid me in another terrible tube for scans. Between emptying the surgical drain bag, rebuilding strength in my arm, and fighting through the nausea, rashes, and fatigue brought on by the immunotherapy, I started to wonder: could it be worth all this?

Three years, and several clean scans and blood tests later, I know the answer is a resounding “Yes!” There is no true remission for MCC, but I am NED: No Evidence of Disease. I made it to my 20th anniversary and one elementary school graduation, so far. I’m hopeful there will be more, but cancer has taught me to live in this moment, so I’m staying right here with gratitude, lessons learned, and a passion to share what I’ve learned along the way.