In 2016, I was diagnosed with acute myeloid leukemia. I underwent prolonged and ultimately successful treatment that culminated in an umbilical cord blood stem cell transplant. Throughout this odyssey, I followed several practices to sustain myself.
The first thing that sustained me was mindfulness. It helped me bring a rich, non-judgmental awareness to each moment as it occurred and realize that everything else – ruminating about the past or worrying about the future – is just noise that detracts from the present moment.
Throughout multiple hospitalizations, various treatments, numerous side-effects, and gradual recovery, mindfulness reminded me that although I could not control whatI was experiencing, I could controlhowI experienced and responded to it.
My hospital days thereby followed a routine of mindful morning stretching, breath-focused meditation during the day, evening yoga poses, and a bedtime body scan that led to a peaceful sleep interrupted only by the inevitable intrusions that punctuate every hospital night. The cumulative effect of these practices was a calm acceptance of my situation alongside a serene hope that all would work out for the best.
I will never know if there was a causal connection between my practice of mindfulness and my recovery and survival. But I do know that this awareness kept me grounded, preserved my identity, and sustained my sense of self through some harrowing times. That in itself felt like a major accomplishment.
Alongside mindfulness, I also engaged in as much physical activity as my circumstances would allow.
My induction chemotherapy and initial recovery occurred during a 37-day hospital stay. I arrived with no debilitating symptoms, so I was restless right from the start. I began morning stretching and evening yoga right away. My routine was enriched when physical therapists taught me some isometric exercises and provided resistance bands to tone various muscle groups.
But my most valued activity was walking the halls. I walked in the late morning, late afternoon, and before bedtime, pulling my IV pole alongside like a faithful companion. I followed a serpentine path down the main hallway and every side corridor, repeating it three times on each outing. They tell me I was walking about five miles a day, which is ironically more than I ever walked in my pre-cancer days.
When I was feeling adventurous, I would hop on the elevator and go down to the main floor and mingle with the civilians. I would also go out a side door to visit a garden area and feel the sun on my face. And sometimes I would march out the front door to drop a utility bill in the mailbox. I was once playfully warned by a nurse that if I had taken one step further, it would have triggered a “code white,” meaning a runaway patient. But like a dog respecting an invisible fence, I never strayed beyond my permitted perimeter.
It felt great to move, but my walking also brought an unexpected benefit. On my strolls, I would encounter nurses and staff all along the way. They would often greet me, and we would chat for a minute if time allowed. It gradually dawned on me that this was the most rewarding part of my walking routine: that I was seen, recognized, and acknowledged as a person and not just a patient.
When I moved to my transplant hospital for a 25-day stay, I was confined to my room for the duration to minimize the risk of infection during the transplant process. I did get a treadmill in my room as a poor substitute for my prior hall walking, but it never could match the social benefits I previously enjoyed roaming the halls.
Standard disclaimer: I have no idea if my physical activity had any direct bearing on my successful treatment outcome, but it sure maintained my spirits during a difficult time.
My leukemia treatment required four separate hospital stays. In addition to the 37-day stint for initial treatment and the 25-day stay for my actual transplant, there were two, one-week stints in between to keep my disease under control until my transplant.
From my first days in the hospital, it was evident that there was very little I could control. Rather than indulging in despair or frustration, I resolved to focus on my immediate environment and be as pro-active as possible in that small world.
Toward that end, I took charge of my room by making my bed every morning and fastidiously keeping everything neat and tidy throughout the day. I began the exercise routines and mindfulness practices described above. I wrote regular reports to keep people informed about my status. It wasn’t much, but it still provided some sense of agency and control within my new “home.”
I also brought a pro-active attitude to my medical care. I looked forward to my daily consultations with the doctors whenever they happened to drop in. I always had questions ready about my treatment, medications, and progress. Their willingness to entertain my questions and concerns felt very supportive, and our consultations came to feel like a synergistic collaboration.
For example, there were at least two occasions when I experienced unwelcome side effects from my medications. As they speculated on the causes, I would add my own observations about the dosing, timing and effects of various drugs. Through these collaborative discussions, we successfully resolved some problems that had perplexed each of us individually.
My most frequent and prolonged interactions, however, were with my nurses. From the start, I sought to create some rapport as they tended to my needs. This began as a conscious strategy on my part, but quickly evolved into a genuine appreciation for all they did and a grateful acknowledgement of theirchallenges throughout the day.
When time permitted, we would chat about relatives, crack some jokes, commiserate about politics, or share life stories. Each of these conversations reframed their clinical care-giving into a more human and personal interaction. The small efforts I made to establish rapport were repaid many times over in the care I received.
In all these ways, I sought to be an active subject in my care rather than a passive object receiving medical ministrations. Once again, I have no idea if my proactive stance had any direct bearing on my successful outcome, but it gave me a significant role in my medical drama that was rewarding in itself.
An additional coping mechanism – and one not to be underestimated – was maintaining my sense of humor.
To be sure, cancer is no laughing matter. Nothing about it is easy, and it’s certainly not funny. That is precisely why I found it essential to retain my sense of humor upon my diagnosis and throughout my treatment.
Doing so became an antidote to the somber reality of what I was facing. It was a quiet form of resistance that kept the cancer at arm’s length. In my mind, humor was a way of saying you may make me sick and may eventually kill me, but I’m still going to enjoy a good (or bad) joke along the way.
In my interactions with doctors, nurses and staff, I routinely used humor to break the ice and lighten the mood. It was not a denial of my situation as much as a way of transcending it, and they seemed to appreciate the respite it provided from the gravity of my condition and the details of my treatment.
In my periodic, written reports to family and friends, I concluded each message with a joke. They weren’t necessarily great jokes. They weren’t necessarily new jokes. Some might even say that I favored quantity over quality. But the process of finding and composing them was a welcome diversion that elevated my spirits even on dark days.
For my readers, I suspect they lightened the impact of my often-dire news and let people know I was not losing hope. And it let them know they could connect with me as the person I’ve always been and not just as a cancer patient.
Humor may not have cured me, but it certainly sustained my spirit over the long haul.
I’ll have more to say about my coping mechanisms in a future post, but in closing, I would just like to say:
An agnostic, dyslexic, insomniac walks into a bar.
The bartender serves him a drink and says, “Hey pal, you look really tired.”
The guy says, “Tell me about it. I lay awake every night wondering if there really is a Dog.”