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LeukemiaPatient Stories

Lessons in Love and Resurrection: My Journey Through Leukemia

Shaun Willson’s story is one of daring independence and strength, as he championed through an acute myeloid leukemia diagnosis while also being the primary caregiver to his wife, Deborah, during her battle with metastatic cancer.

April 2018 Vol 4 No 2
Shaun Willson
Scottsdale, Arizona

I recently took a very deep breath and asked my doctor, “Why am I still alive?” I did this because my cancer journey included worst-prognosis leukemia, multiple rounds of brutal chemotherapy, a bone marrow transplant, and surgical repair of a damaged heart—all for only a very small chance of survival.

I prepared for an answer related to lifestyle or something biological, ready to smash platitudes into smithereens. A diet of cigarettes and donuts would have served me as well as all those years of salads and exercise. In fact, maybe I didn’t eat enough donuts. I’ve read the primary literature, I’m current on the research, and I thought the whole thing was a crapshoot.

I didn’t get platitudes.

Dr. Khera threw her East Indian wisdom at me: “You are part of a big picture, and you cannot see all of it. You are here to be an inspiration, to provide a new perspective to everyone around you, including your doctors.”

Imagine hearing those words from your physician. I got the message. So here is my story.

Chasing Independence

I grew up in the land of tobacco, shotgun shacks, and the Ku Klux Klan. I entered school the year after desegregation. There was an undercurrent of seething animosity everywhere. It was a horribly dysfunctional place and time. My life depended on me never being a product of that world, so I decided to become a citizen of the planet, and that took 30 years.

I created a life of my own design, trading ambitions for passions, and turning my profession into a mission. I made my life my life’s work.

The result was a journey through the human experience—glorious and painful. Leaving behind a conventional lifestyle, I explored the world any way possible, often for months at a time. I built an off-grid home in the woods. I traveled the United States in a solar-powered Airstream trailer. I was elegantly homeless, a gypsy and a refugee. My goal was to redefine living, and I did it.

As a college environmental educator, I used modern technology to share with my students my explorations from anywhere on the planet. It was risky, expensive, and utterly incredible. I taught courses from 4 continents—on a train traversing Scotland to an outpost in the Ecuadorian Amazon. Sometimes my office was the tailgate of my 4 × 4. I learned the miracle of serendipity. A morning in a Buddhist temple or a run along the Continental Divide was blended into my online classes by afternoon. The response from students was remarkable. My courses filled instantly.

Absent of a television or a watch, I enhanced my work by hiking, bicycling, and trail running: the Cairngorms of Scotland, the Darién of Panama, the Sonoran Desert. I was a mediocre athlete, but eventually those hours on the trails became my sanctuary, as if I had found my religion. The problem in creating a life so indescribably precious is the emotional devastation of its loss.

The Walls Closing In

Suddenly, I could no longer run. Then, I could barely walk. My immune system malfunctioned in strange ways.

On November 11, 2015, I was diagnosed with acute myeloid leukemia (AML), a disease I had probably fought for some time. My specific AML version had mutations linked to complex karyotypes (such as MLL), which put me in the worst survivorship category, with a 1 in 5 chance of survival with a successful bone marrow transplant, essentially zero otherwise.

In addition, my heart was involved, and my aortic valve had failed. Death was close and real. Tethered to chemotherapy, and still healing from open heart surgery, I had to immediately end my working life. Every personal goal, along with the decades of efforts—all gone.

The future held nothing but misery, including months of confinement in a leukemia ward. There I would receive the most grueling chemotherapy available, followed by a bone marrow transplant, and I would still probably die. If I did manage to survive, the long-term side effects would inhibit me from doing the very things I loved most. My sanctuary was gone.

Yet that was not the worst: I was the primary caregiver to my brave wife, who was battling metastatic cancer, and her therapy was no longer working. Deborah and I sat on my hospital bed and worked out the scenarios for who might go first.

As an individual and a couple, how do you prepare for that? How does one carry on in the face of utter despair, legitimate hopelessness, and such comprehensive and entire loss, not just a loss of life, but a loss of living? I didn’t know.

I realized that this wasn’t suffering that could be healed through a book, a mantra, or a mindfulness workshop. This was suffering real, big, and immediate. So even though I ached to just end things immediately, I changed my paradigm: I didn’t exactly give up. I gave in. If I was going to die today or tomorrow or next month, I would do it my way, and until then I would try to live in grace, love, beauty, and truth.

Doing It My Way

So what does that mean? Simultaneously plugged into chemo-poison and life-preserving drugs, I spent hours on an exercise bike, pointed out of the hospital window overlooking San Francisco. I refused to wear a hospital gown, preferring to die in my own clothes. I ate everything I could tolerate, including a pizza nearly every day.

I walked a marathon around the leukemia ward dragging my IV pole. I stayed out of bed, except to sleep and rest. I never turned on the TV. I made small preparations for how and where I would end things.

And, I kept not dying.

My good doctors were either neutral or mildly resistant to my approach, with comments such as, “Your chances are dismal,” “You’re taking me out of my comfort zone,” “Yes, we can talk about your end-of-life options,” or my favorite, “Let me show you where you are on misery mountain.”

A week before my scheduled discharge, 5 poker-faced doctors gathered around me and said, “We are sorry, Mr. Willson, but we can no longer find any reason to keep you here. You are being discharged. But don’t celebrate.”

What?

Being locked for weeks in the sterility of a leukemia ward is a lesson in sensory deprivation. If I could feel the wind on my skin and die immediately, it would be a celebration.

The Big Picture

So I directed my anger to this: 46 days after my bone marrow transplant, drugged and incoherent, with my patched heart flopping inside my chest, I managed the L’Eroica vintage bicycle ride through the hills of central California on a $50 Austrian-made Puch, circa 1965.

There were only 6 of these events in the world. I reasoned that I could be miserably sick in bed, or I could be miserably sick riding my bike. Besides, it would be an epic failure, except that nothing failed.

I latched onto that idea. In a way, it was a relief having nothing to lose. So between weekly medical appointments and bouts of mind-bending sickness, my wife and I would escape to the mountains, strap my IV tubes under my shirt, and hike and run the trails. After running a half marathon at 6,000 feet along Lake Tahoe Rim Trail, I waited 2 days, and then did it again, just to make sure.

And then I went back to San Francisco and switched doctors. The way I see it, our medical establishment is wonderful at keeping us from dying, but miserable at saving lives. Saving my life was entirely up to me, whether it was a life of one day or a decade.

As individuals, maybe we cannot change the world, but we can certainly change our own version of it, and the immediate sphere of life around us. We can just do something—anything—to set free the magic of serendipity, and then see what happens. That is all I can focus on. Maybe that is why I am still here.

There are still times when I wallow in despair. I don’t want this story. But then I try to consider the elegance of my “right now,” where wonder is in the daily details, the kinds of experiences we can all connect with after life slams us flat on our backs.

For me, it is the magic of the wild places and breathtaking mountain trails. So today I am a returning citizen of the planet, hopefully affecting change and inspiring others to live their own epic stories. I’m running across endangered landscapes, sharing what I’ve learned, and proving that we can be more than a set of daunting circumstances.

I figured that if I somehow survived this nightmare, that would be my new profession—to inspire lives of love and resurrection. I cannot possibly do it alone.

Postscript: Deborah passed away on January 9, 2018. The world is a lesser place.

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Last modified: April 18, 2018

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