What Are You Going To Do About It? Get Better

My Leukemia Story

I was diagnosed with chronic lymphocytic leukemia (CLL) in 1998 when I was 37.  My career was growing at the time.  My first daughter had been born a few years earlier.  My next two children came in 1999 and then in 2000.  

The leukemia diagnosis was a shock to me.  There is no history of cancer in either my parent’s families.  My diagnosis came after a routine checkup with my regular doctor.  A few tests showed I had elevated white blood counts. The doctor referred me to an oncologist.  

The oncologist had me undergo a bone marrow biopsy.  I learned I had CLL.  I had several protocols for chemotherapy. In 2007 I underwent a bone marrow transplant. The leukemia was still present in by system following the BMT which I was told was a failure. I underwent chemo again once or twice, the last time in 2015.

Having a BMT meant I did not have an immune system at all for several years. I often became acutely ill requiring hospitalization. I probably spent more than 300 nights in the hospital. One time I was in the ICU for six weeks for pneumonia.

I was in a coma and was on artificial life support. While the world around me was working around the clock to save my life I descended into another reality where I was neither here nor there.

 I found myself lying on a bed in a railroad car on a train travelling through the southwest. It was one of those rickety rackety trains you see in the old westerns, lurching from side to side, chugging along from place to place. I remember the railroad man shouting “Grand Junction! Grand Junction next stop. Grand Junction!”  When we pulled into the station I asked the guy “Do you have joe?” He brought out a black coffee kettle with white specks and poured some joe. 

When the train, which had gone from Santa Fe to Pojoaque and then up to Colorado, pulled into the next station the same guy was there with the same coffee kettle. 

At the last stop when I asked for more joe he replied, “No more joe.” I was very tired but very relaxed. 

I was lying there one day when the chug chugs and the hoot hoots of the train melted into the clicks and whirring of medical devices attached to my body. The sides of the railroad car began to melt away and a patchwork of a new reality began to take form. I was still in the bed, but the blacks and browns of the wooden railroad vessel dissolved into sterile whites and pastels. I imagined myself in a kindergarten with small tables and chairs and cartoon pictures on the walls including one of a choo choo with a smiley face.

I was breathing again. I moved my legs and my hands and my fingers. I was very  thirsty. In the corner of my new room was a sink. I was extremely thirsty. I wanted to take all the  tubes and wires and tapes and bandages off from my face and my arms and my hands. I wanted to get up, put my mouth under the faucet and drink and drink and drink. I had been in the desert.

Shortly thereafter, the doctor came in. He asked me to look at myself and he asked, “What do you see?” 

“Skin and bones.” I weighed under 100 pounds. 

“What are you going to do about it?” 

“Get better.” 

My sister walked in from New York with her friend. She said I had a Gerry Garcia beard which if you see my pictures pretty much describe it.  

I wanted to set out immediately onto the trails and onto the slopes. I trained for a descent into the Grand Canyon for Team in Training with the LLS in 2012. My oncologist did not like the plan. 

In 2013 I trained for a journey into Yosemite. On one hike one of the participants had had only painkillers for breakfast after having had her wisdom teeth out the day before. The person collapsed on the trail. I did not go on the trip to Yosemite.

I joined a local outdoors club which offers rigorous training courses. I joined a course and trained up for a September hike which was 17 miles and 3500 feet elevation gain. 

I also resumed downhill skiing again a few years ago. I joined a class at my local mountain which went from 7 to 9 Wednesday nights. One night though I got separated from the class in a cloud bank. I told the instructor I should not have been allowed to get lost. She gave me a private lesson afterwards.

I have since been skiing a lot at my local mountains. 

My kids are grown up and my life is good. There are a lot of reasons to hope and to live. 

It is easy to say life is good and things are great. It is easy to get on an airplane and go someplace. It is easy to be some kind of adventurer so people can say I’m living the dream. 

My cancer was fading into the past. I found myself listless and without direction. I did not connect with the world around me. I was emotionally devastated. I felt alone. I felt I had fought my cancer alone, When I woke up I didn’t know who I was or where I was.

Epic Experience

I met the camp contact,  Fuzzy, at the Denver airport in March 2024. I thought he was going to have a normal name. I met 10 other cancer survivors there too, We all began introducing ourselves to one another, Bill, Bob, Jane, Janet etc. until Fuzzy instructed us each to take a nickname. I became Wolfie who I was to be at the Epic Experience ranch for the next week. 

I thought Epic Experience was all going to be outdoor experiences and adventures. The first night following dinner we assembled in the living room .The counselors each got up and shared a horrific cancer story. Each person shared a horrific story, Each person cried.

I learned I was not alone. I had never been alone, I am crying now as I write. Life gets interrupted. There is a new normal. The things that once were no longer are. 

Epic Experience asked, “What are you going to do about it?”  

“Get better.” 

-Bill Wardwell aka Wolfie