Published on April 6, 2021
A Cancer Odyssey: How to Cope with Long-Term Hospitalization
In June of 2016, a routine physical exam revealed I had dangerously low white blood cell counts. A subsequent bone marrow biopsy detected acute myeloid leukemia (AML). I was immediately hospitalized and began a week-long, 24/7 chemotherapy cocktail.
My hospitalization continued for another five weeks to treat the inevitable side effects of high-dose chemotherapy. But it bought me time to explore further options, get second opinions and opt for a stem cell transplant.
In October of 2016, I spent four weeks in another hospital for the transplant. As my recovery progressed, it became evident that I had hit the treatment trifecta: early remission, full engraftment, and no graft-versus-host disease. In the sweet words of my transplant oncologist, “this is as good as it gets.”
When I was told to expect that initial six-week hospital stay, I was dumbfounded. I realized I needed some coping strategies to withstand the confinement and uncertainties awaiting me. The strategies below served me well during multiple hospitalizations, and they continue to do so today.
1. Mindfulness, Meditation and Yoga
Through a fortuitous coincidence, I had taken a community education class in mindfulness a mere two months before my diagnosis. I had dabbled in meditation and yoga before, but at that point, I decided to integrate them into my daily life. It was excellent practice for something I didn’t even know was coming.
From day one in the hospital, mindfulness sustained me. It helped me live in the moment, non-judgmentally accept my situation, focus on what I could control (which wasn’t much) and let go of everything else. As I experimented with formal meditation, guided imagery and body scans, they all had a calming, centering impact on my otherwise restless mind.
But my most helpful practice was simply being mindful during every activity and moment of the day. Staying grounded in my breathing and immediate sensory experiences was a powerful counterpoint to the stresses of my illness and treatment. Doing so kept past regrets and future anxieties at bay as I fully lived each moment as it came.
2. Physical Activity
I also did as much physical activity as my circumstances allowed. My daily routine was morning stretching, afternoon exercises, and evening yoga. With help from physical therapists, my hospital room became an impromptu gym with resistance bands and isometric exercises that minimized the deconditioning that accompanies a prolonged hospital stay. Doing these activities consistently increased my energy and improved my mood.
My favorite activity was walking the halls. In the late morning, late afternoon and before bedtime, I escaped my room and went exploring, dragging my IV pole and medications alongside. My nurses estimated I was walking five miles a day, which is ironically more than I had ever walked before.
The movement was liberating. The exploration was interesting. But the social aspect of walking became paramount. As I made my daily rounds, now familiar nurses and staff would offer smiles, waves, or a brief chat. To be seen, recognized, and acknowledged as an ambulatory person rather than a recumbent patient was surprisingly affirming.
3. A Proactive Stance
More broadly, I was a proactive patient. I took charge of my room, made my bed, kept things tidy, rearranged the furniture and “decorated” with bandanas from wilderness canoe trips that reminded me of happier times. Taking control of my little world gave my days rhythm and structure and afforded me agency and purpose when these were hard to come by.
I engaged my nurses at every opportunity. When they asked me how I was doing, I would answer but then ask them how their day was going. As we got to know each other, their care felt less like a clinical procedure and more like humane caregiving by dedicated practitioners. Having positive, affirming encounters with my nurses ensured I would get their best care and made our time together more enjoyable and meaningful all around.
When doctors visited, I always had questions ready and was eager to learn how I could facilitate healing and recovery. They appreciated my interest and were happy to share as much information as they had. As they did so, my care became a collaboration as we jointly deciphered which medications and interactions were causing various side effects and how best to alleviate them.
4. A Sense of Humor
I have always had a vivid sense of humor, and I was determined to maintain it throughout this odyssey. Finding and sharing humor was a way of putting cancer in its place and it sustained my identity even on dark days.
With my care team, witty banter and goofy humor broke the ice. I learned that doctors and nurses can be pretty funny if given permission by their patients, and when that happens everyone is more relaxed. But my humor also let them know that behind my diagnosis and symptoms, there remained a person who could rise above a daunting medical prognosis.
With family, friends, colleagues and neighbors, humor assured them I was the person I had always been. People who otherwise didn’t know what to say to me as a cancer patient still knew they could share a joke and that sometimes dark humor was the best medicine of all.
5. A Reassuring Worldview
I also benefitted from a broader worldview that helped make sense of my situation. For many people, that’s religion, but I’ve always been a bit too secular to find much comfort there.
Given my sociological training, I was drawn to developing a scientific understanding of my condition and its outcomes. It was helpful to place my novel and frightening experience in the broader context of the medical knowledge that guided my skilled practitioners. The process felt like a private tutorial in cancer care that also normalized my otherwise scary diagnosis.
This worldview reinforced a pragmatic, problem-solving perspective on my treatment, healing and recovery. And for those issues beyond anyone’s control, mindfulness helped me dismiss worries that did not lend themselves to a medical remedy.
6. Writing My Story
My most important coping strategy was writing my story. From my first week in the hospital, I composed lengthy email reports to keep everyone informed. But I quickly realized that the writing I was doing for others had become therapy for me.
It allowed me to take the chaotic threads of my daily reality and weave them into a coherent narrative of what was happening. Creating a storyline tamed my fears and preserved my identity. What I learned was that if I could make my experience intelligible by putting it into words for others, I could come to terms with whatever was going on.
I further learned that although I couldn’t control the trajectory of my disease, I could craft the narrative of my life. Composing these reports thereby became a psychic survival mechanism and one that kept me connected to my readers who responded with a perfect blend of heartfelt support and bad jokes.
Finding Your Strategies
While doctors cured my body, these coping strategies kept me sane, sustained my sense of self, and helped me make the best of a bad situation.
They may or may not apply to others facing a dire prognosis and prolonged hospitalization, but I would encourage every patient to be deliberate and purposeful about cultivating their own strategies to find the resilience and patience needed to weather their cancer journey. Perhaps the best strategy of all is simply learning to play the hand you are dealt.
As a five-year cancer survivor, I have integrated these coping strategies into my daily life. They have a surprising relevance to whatever the world throws at me. Most recently, that includes coping with the uncertainties and limitations of a year-long pandemic (that’s a whole other story). But therein lies a final lesson: that developing cancer coping strategies may have benefits well beyond the healing and recovery I wish for all of you.
Steve Buechler is the author of “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes).” Information on this memoir as well as his blog posts and webcasts may be found at www.stevebuechlerauthor.com. To learn how he has applied these coping strategies to life during a prolonged pandemic, see How Cancer Prepared Me for a COVID-19 World.
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