The Confusing Promised Land of Leukemia Maintenance

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I remember it like it was yesterday. I was lying in my childhood bed watching Chopped on Food Network—any competition show with a simple story arc was all that could keep my attention in those days. I had just finished nine months of intensive chemo. My brain was foggy. My body bloated and dimpled. Small hairs were beginning to sprout back from my bald head. The symbolism was not lost on me.

In just one week I will be in my maintenance treatment, I thought to myself excitedly. Maintenance was finally here. Maintenance had been my goal through my intensive treatment. Maintenance was the promised land. When I entered maintenance, the attack on my blood cells would be less severe. With a much smaller dose of daily chemo, my blood levels would rise to healthier levels. My immune system would begin rebuilding, even if slightly. Enough that I would be able to reemerge in the world without fearing becoming sick from everyone I saw and everything I touched. The mask could come off. The hand sanitizer would stop cracking my knuckles. Most importantly, I could go back and finish my business school courses and continue my life that was abruptly stalled with a cancer diagnosis.

Not so fast.

The next morning, I woke up with chest pains and alerted my parents that I needed to go to Urgent Care at my cancer hospital. After hours in the waiting room, some blood tests and a chest x-ray, I was diagnosed with acute myopericarditis. My heart was swollen and the sac around it inflamed.

The doctors did not seem too nervous, but they admitted me to the hospital. The next day, I fainted twice, just barely avoiding a head injury. It turned out the walls of my heart had thickened even further, and my heart palpitations were consistent with heart failure. I was now bedridden. When I would stand, my heart could not beat fast enough to keep me conscious.

I was transferred to a nearby hospital where they performed a heart biopsy to confirm that this was indeed a viral infection and not cancer in my heart. Before being wheeled out of the cardiac ICU into the procedure, I looked at my parents through watery eyes and told them that I gave up. I simply couldn’t take any more of the pain, the unknowns, the sadness. My mother’s eyes welled to match my own.

How is this happening to me, I thought? I was just about to enter maintenance, and now my heart is failing me. It was all too much. I simply couldn’t take any more blows.

Under the blinding, fluorescent medical light, the doctors cut a slit in my groin and went up my vein and into my heart to snip three pieces of my body’s internal pump out of me. I heard the clicks in my ear, though the doctor didn’t believe me. Snip, snip, snip. I was awake the entire time, begging for more anxiety medicine.

After four grueling days of waiting for the biopsy results, I learned that my heart was indeed reacting to a virus. I did not have cancer in my heart. I made a full recovery.

After resting for a few more weeks, I finally was given the OK to enter maintenance. Unfortunately, I very quickly learned that maintenance was not the desert oasis that I thought it would be. Quite honestly, it perhaps can be more likened to a mirage. I was not magically healed. Maintenance is a marathon—not a sprint. I expected to regain my physical capacity in about a month. I am still trying to add muscle back two years later. I am still reconditioning my body to be able to run without severe ankle pain. I am still foggy and move more slowly—it turns out a low dose of chemo is still chemo. I have to be kind to and patient with myself as I sleep in and ease into the day, starting later than most people. And most importantly, I am readjusting to life with a new perspective.

With a new outlook on life comes different values and priorities. There has been a ton of friction as I reestablish relationships with family and friends. As I mourn certain friendships. As I set new boundaries. As I protect myself.

So, maintenance is not quite the Aman-resort that I thought it would be. But slowly you start to recognize major milestones between the never-ending symptoms. I finished business school. I started a business. I wrote a manuscript. I bought a dog. I went on a road trip. And I do feel better and better, just not how I thought I would feel.

Maintenance, while not the promised land, is indeed a place full of hope.

By Charlie Razook