Johanna Rauhala

I have stage 4 cancer, and I'm in remission.

 like a contradiction. When I state that phrase to strangers, there's often confusion. How can you have cancer and still be in remission? Aren't you cured? Doesn't remission mean it's over? Something many folks, myself included until recently, don't understand is that remission is frequently temporary. The Merriam-Webster online dictionary defines medical remission as “to abate symptoms (as of a disease) for a period.” It is the “for a period” phrase that holds the terror, because those of us who’ve been diagnosed with stage 4 disease recognize that every day is a wary wager on life’s high-stakes poker game: risky, costly, unpredictable.

And yet, as someone who will never be free from the tethers of blood tests and port flushes, the “maybe” is where I live. In the in-between. I live in this space that will forever be in the italics of 

After six years of treatments, including a breast amputation (mastectomy is the other term, but I prefer not to be euphemistic), multiple chemotherapies, seven surgeries, two cycles of radiation, immunotherapy, weakness, arm paralysis and permanent hair loss, remission feels like riding a bicycle with a weakly-patched wheel. I am forever checking that the tire hasn't blown, that I won't fall off the bike. Can you relate?

Let me give some examples. Questions: Should you save for a vacation next year? Or should you dip into savings now? Should you continue saving for retirement? Your car is in decent shape but lately it’s requiring more repairs. Given the medical unknowns, would you buy a new model? Would you leave your spouse with the payments? If you're single, should you buy a house? Should you bother with quality shoes? And the garden, the garden….will the bulbs even bloom next May?

The in-between. The liminal. It's where I live. It's an enormous shift when the future falls. I had been both a teacher and a teacher mentor for over 20 years. It was spring break when I got the call, three days before returning from break back to work. Monday arrived. I drove in in to my school site that morning, that bright, spring, achingly clear morning, pulled into the parking lot and sat. And sat.

I looked at my phone: 10 minutes before the first meeting of the day. The world melted into nightfall and I closed my eyes into terror. I called my boss and said I couldn't do it. I couldn't come back to work that week. The shock was too great.

Stops and starts would mark the next year and a half of my work life, until recurrences and disability forced me into retirement. On my last day, I still had appointments on my calendar.

I miss work. I miss a clear purpose, a daily direction. I miss my dear colleagues and friends. I miss the book recommendations, scary pumpkin jokes and raucous laughter at lunch.

So what do I do? I am in remission. The tumors are dormant. I haven't worked for pay in over five years, and I struggle with fatigue, pain and feeling unproductive. Our income is cut. I wake up and my neighbors head off to work; sometimes I can't get out of bed. Other days are better. I put the laundry on the line and watch the towels snap in the breeze, or bake up pastries, filling the house with the aromas of cinnamon and sugar. Homecoming food. 

Or I go walking with a friend. I manage insurance paperwork and bills. I still don't know how much to save or spend; the seesaw tilts on the axis of the latest scan. It's touch and go. Minute by minute, breath by breath. I don't feel the need to climb Mount Kilimanjaro or to run a marathon. Those would be nice, but they’re not my race.

Yet here's what I’m beginning to know: there has always been a warmth inside the circle and I am drawing closer to it. Outside, my world may be shrinking. Inside, it grows ever brighter. When the known limits tighten, the ground deepens below.

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Johanna Rauhala

When Spring Is Not Assured: Living In The Terminal Liminal

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