The year 2023 dawned like a scene from a period movie with a traveler standing in bewilderment on a vintage railroad platform beside a rickety cart piled high with trunks, train cases, and bags of every shape and size. I was dwarfed by the burden of so much difficulty ahead in the new year. 23 has long been my favorite number, and I’d envisioned 2023 as a year of retirement, leisure, and frivolity. However, three months before the year started, I was diagnosed with blood cancer.
Exhaustion was the harbinger of my disease. Cancer Fatigue, as is its formal name, is a peculiar beast. It doesn't dissipate with rest. The escalating disease and the body's relentless battle against it stealthily and ruthlessly use up energy reserves. Picture this: think back to a time when you had a common ailment, perhaps a mild flu. Recall the way it left you drained for a couple of days. Now, imagine that flattened feeling never ends. The distinction of cancer fatigue is that it lingers without respite, unyielding in its persistence.
Fatigue and pain are often invisible. Looks can deceive. In the early days after my diagnosis, I did not look sick. It was easy to fool others and myself, continuing my days much like before. There were times when I'd only realize the extent of my exhaustion upon waking with my computer precariously tipping off my lap. Although I appreciated the brief escape from the conscious awareness of the cancer growing within me, I was frustrated that I would wake up feeling just as drained as before I dozed off. Cancer Fatigue is a formidable force. I had to make peace with exhaustion. I accepted the need for naps (plural) as a part of my day and learned to say, "Not today," to many things I otherwise would have liked to do.
Exhaustion became more understandable when I started to get sick, not from cancer but from the treatments.
Cancer treatments are done in cycles. In my case, a cycle was three weeks of a cocktail of targeted toxic cancer drugs and a week off to recover. During the first cycle of treatment, I experienced a new kind of exhausting pain that I attributed to cancer cells dying and being swept from my body. This happened for only a day or two during each of the three weeks, and then I would bounce back, albeit with a lingering elevation in fatigue.
Cancer drugs have a cumulative effect, so cycle two was more challenging, with three or so days of feeling miserable and exhausted, but again, I would bounce back with a few days of feeling not so bad except for the fatigue. But, right after the second cycle, one of the cancer drugs paired up with my hormone replacement therapy and caused a pulmonary embolism that hurt like hell and damaged one of my lungs. Impaired lung function makes everything fatiguing.
In cycle three, I never bounced back, and within hours of completing that cycle, the pneumonia that was silently infecting one of my lungs turned into septic shock. I collapsed, unconscious on the floor of our bedroom, and had to be hauled off to the hospital in an ambulance. Not only did I nearly die, a fact I did not grasp at the time and still have a hard time wrapping my brain around, but I became “deconditioned.” I could not walk more than 100 feet and needed a walker to make it that far.
Discovering that I could no longer power through exhaustion as I did during my years as a single mom, a production company owner and an active community member was a harsh reckoning. When I tried to ignore my fatigue, my body just gave out. When I tried extra hard, sometimes I could achieve more in that moment, but the price was a significant decrease in energy the following day or even for several days after. Exhaustion had become part of my life. Recognizing this, I knew I had to find a way to manage and coexist with it.
I learned about Spoon Theory[1], conceived by a clever woman, Christine Miserandino, who has lupus. Over dinner, when asked what it felt like to be chronically ill, Christine handed a fistful of spoons to her friend, explaining that the spoons represented a single day’s energy reserve. She then asked her friend to describe a typical day, starting with rising in the morning. Christine took away spoons for each activity, revealing the challenge of energy rationing. By 7 p.m. on this fictitious day, her friend had no more spoons, and she understood the struggle of having limited energy (spoons) to get through a day.
People in good health and not facing extraordinary challenges begin each day with an abundance of spoons, perhaps even some to spare. Chronically ill people are short on spoons before a day even starts. They must make choices and sacrifices every day because of the limits of their energy.
Spoon Theory helped me and those close to me understand the reality of cancer fatigue and provided clues about how to manage it. It gave us a shortcut for communication. “I’m running low on spoons,” I might say when asked to add another activity to the day. My wife Jackie might say, “How about if you go easy in the morning and reserve some spoons for the plans we have tomorrow night?”
During the pre-transplant conference, the oncologist explained, “What you’ve been through so far has been like getting hit by a bicyclist. The stem cell transplant is going to be like being broadsided by a VW bus.” She was not wrong.
The early days post-transplant went far beyond any exhaustion I could imagine. My body used nearly all its energy to repair and heal from the calculated assault it had endured. Very little energy was available for much of anything else. Six days after my transplant, infections took the most significant toll on my energy and put me in the hospital for 18 days. I remember feeling like a shell during that time. Even trying to focus took more energy than I had. It was day after day of “Not today.” I did not watch TV. I could not read. Writing was out of the question, though many ideas and beautiful words percolated in my head. I mostly lay in bed like a blob and waited for the miracle.
Once the worst was over and we returned to our home, I had to think about what was most essential and pace my activities. Showering and getting dressed for the day were high on my list. Those simple tasks left me shaky and exhausted and made me understand how much of daily living I took for granted.
I took handfuls of pills in those early days after the transplant, sometimes more than 30 per day. The medications provided what my body could not produce right after the high-dose chemotherapy wiped out so much, and they stifled the opportunistic infections that took advantage of my barely existent immune system. Most of the prescription bottles advised not to operate heavy machinery and warned about dizziness, confusion, and fatigue. The effects of the transplant were exhausting. The infections were exhausting. The drug-induced fatigue was exhausting.
Sometimes, it is difficult for me to recognize how much my well-being has improved, but others can see it and often comment. I never tire of that feedback. (Pun intended.) It gives me hope and sometimes even a boost of energy.
I discovered a positive aspect of living with exhaustion. I’ve developed the habit of filling my days with more of what means the most to me. It’s a variation of quality over quantity. I used to live at a very high speed, seemingly accomplishing a lot. Looking back, I can see I was missing much along the way.
“Not today” are words of self-care and reasonable boundaries, not deprivation or disappointment. It’s a beautiful way to live.
[1] Spoon Theory by Christine Miserandino. Her full personal story of what it is like to live with sickness or disability is available at www.butyoudontlooksick.com.
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