August 11, 2023

Living with Ambiguity in Real Time.

My wife’s phone rang on the coffee table, and our eyes immediately darted to the noise, abruptly shutting down our conversation mid-sentence.

A rush of fear and anticipation creeped down my arms as I recognized the number. “Carter,” I called toward the staircase, “It’s your doctor.”

As our 19-year-old made his way down the stairs to our living room, we answered the phone to await news following Carter’s CT scan from the evening prior.

After a few brief pleasantries back and forth, our doctor got to the point. “I’m sorry I don’t have better news. Carter’s scan is concerning. It could be nothing, but we’d like him to come in tomorrow for a PET scan, and we’d like you to make an appointment with oncology.” Oncology. More words were exchanged, but I can’t recall any of them. My mind went dull and dark while my body flipped to high-alert.

The days ahead felt strange and numbing. My head was peppered with the kind of fear that pushed my mental stability to its limits. I just needed to know. I have never experienced days that felt so long. The many tests, labs, doctors appointments, and a painful bone marrow biopsy eventually revealed that our son had Primary Mediastinal, large B-cell Lymphoma. Cancer.

Quite simply, there was a large mass growing in his chest pressing against his lungs and narrowly close to his arteries. This was the puzzling explanation to the night sweats, rapid heartbeat, and shortness of breath he’d been experiencing for months.

Our world, his world, abruptly shifted and twisted like a speeding car making a 180. Carter had to quickly drop out of his freshman year at college and move 1,200 miles back home in order to undergo six rounds of inpatient chemotherapy over the course of five months. His treatment regime was merciless, fittingly referred to as “the red devil” because of its clear, bright red color and harsh side effects.

It didn’t take more than a couple of rounds to lose his hair, energy, and muscles. Following each treatment, Carter dragged himself home to his bed to recover, incrementally improving from the day before as the poison flushed out of his body. He passed the time watching countless seasons of “Survivor,” putting complicated Lego sets together, eating his favorite foods, cuddling with his girlfriend, and hosting occasional visitors in the folding chair propped near his bed. How he continued to manage it all with such determination and grace still astounds me.

Six weeks following the end of his chemo regime, Carter returned for a follow-up PET scan. We learned that his tumor had shrunk significantly and had not spread to other parts of his body (Hurray!); however, cancer cells were still detected and active in the area. More tough news to process…he now needs to receive proton beam radiation at the Mayo Clinic in Rochester, Minnesota in hopes of zapping these last stubborn cells and be considered “cancer-free.”

We are once again waiting. It will be two weeks until his radiation begins so we sit in the abyss of the unknown, again, unable to speed up or fix anything. The kind of patience I have had to muster for the past seven months is utterly counterintuitive to my instincts as his mother and protector. If I could trade places with him, I undoubtedly would have eons ago, but life doesn’t provide us such bargains or trades.

I have absolutely no control to change any of this no matter how strong my will or prayers (believe me, I’ve tried). Every day, I dig deep to conjure up a large scoop or two of radical acceptance to get me through, and I don’t do it alone.

Living in the midst of ambiguity, or the “in-between,” is hard work. I often picture myself standing on a large rock in the middle of a wide, fast-flowing river, in which turning back is not an option, but the shoreline looms too far ahead to feel attainable. It’s a helpless and frightening place to be, and for far too long.

How do we keep living our daily lives with cancer looming in the many crevices? Oddly, our family has adapted and shifted through this process that includes both the mundane and the unbelievable. What choice do we have?

To cope, instead of fixating solely on the other side while stuck in the middle of the river, I try to look downward, my gaze focused just a few feet in front of me. That’s how I can notice the small stepping stones at my feet. Each stone gets me closer to the shore. If I look too far ahead, I feel overwhelmed and paralyzed. I just need to keep seeing the next small stone in front of me and move, even if that means I will occasionally land on an especially slippery or unstable rock.

Through my son’s cancer journey, this is a practice I’m living out right now, in real time.

I may still be in the river, landed on a rock, but I’m moving closer to the shore. Living life “as if,” planning for the future, accepting help, and experiencing the joyful moments are my stepping stones to the other side.

And you better believe, I hang on to the 90 percent cure rate post-treatment statistic.


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