Inspirational Stories

My wife, Linda, and I celebrate and lament our first anniversary; I was diagnosed with chronic myeloid leukemia (CML) on June 5, 2023. While death is not impending, our future has radically changed. There are losses, namely a more predictable and imaginable future. Certain certainties are broken that cannot be fixed. We search for new norms that require reimagining hopes, dreams, and aspirations. Of course, we will not give up on illness-specific hope that remission comes sooner than later and that side effects subside. No proof exists that we will get what we hope for. The idiom “leap of faith” represents a daring step or decision taken with trust in its positive outcome despite lacking evidence or certainty. I lament, “Do we dare take that leap?” CML feels less like a death sentence and more like a life sentence, a sentence that I find hard to bear. I can only imagine the pundit saying, “It can always be worse.” Now, I have cancer survivor guilt. Thank God, our Sunday school teacher and licensed professional counselor, Rebecca Spooner, insists, “It is not a competition.”

“Until death do we part” has a new meaning. Too few appreciate the pain, fear, and confusion endured by the spouse. Unfortunately, while attention and treatments are being given to the person with cancer, the spouse or partner is often the unsung hero, which is the case with Linda. While I lament about an uncertain future, Linda also finds uncertainty. In a recent conversation, Rebecca suggested that we read the article published by the National Institute for the Clinical Application of Behavioral Medicine entitled How Trauma Can Affect Your Window of Tolerance. Rebecca called one evening and asked, “Mark, how are you doing emotionally?” My weeping spoke volumes. We talked about my life outside the window of tolerance, a life of hyperarousal ― being anxious, depressed, out of control, overwhelmed, and filled with fight. Linda, on the other hand, identified with a state of hypo arousal ― spacy, zoned out, numb, frozen, and shut down. In both cases, cancer had thrown us off balance. In all fairness, Linda was right to exclaim, “Mark, you are not letting me in. You are shutting me out.”

As a former kindergarten teacher in the early 70s, I remember reading to the 35 kindergarteners the book Alexander and the Terrible, Horrible, No Good, Very Bad Day. In this classic tale, we follow the adventures of Alexander, a young boy who experiences an exceptionally challenging day. Most of the kindergarteners had experienced very bad days.

Unlike Alexander, we have experienced a no-good, very bad year highlighted by blood analysis data: periodic and anxiously awaited BCR-ABL cancer markers, CBC and chemistry profiles, and iron deficiency levels. Those are our “future forecasters.” A retired medical technologist/chemistry supervisor, Linda highly scrutinizes blood counts. I await nervously to hear about my white count, hemoglobin, hematocrit, creatinine, potassium, iron, neutrophils, etc.

The no-good, very-bad year has also been highlighted by severe fatigue, lack of energy and stamina, anemia, iron infusions, ER visits, bouts of pleural effusions, body aches, and severely labored breathing, all caused by the side effects of Sprycel®, an oral medication given daily to save my life but also a medication that impairs me from living the good old days. Daily doses of Sprycel® require me to live between a rock and a hard place. Damned if I take it, and damned if I don’t. It is hard to live with it and impossible to live without it. While the chemotherapy is successfully attacking my cancer cells, it is also turning on my body. I often live in a state of tiredness and shortness of breath. Our annual national park hikes with my childhood friend and his wife have abruptly stopped. I am no longer the right-hand man disking fields, clearing trees, transporting branches, lifting 40-pound bags of corn over my shoulders, and the like with my brother-in-law. My annual mission ministry trips to serve kids from the Kipsongo slum in Kitale, Kenya, have been eliminated. Daily physical activities such as walking the dog and working in the yard leave me breathless. Daily naps are necessary for relief from fatigue. Still, there is no antidote for oxygen deprivation except for Sprycel® treatment vacations; thoracentesis was introduced to remove fluid around the lungs which causes shortness of breath. Doubling the milligrams of diuretics is also part of the treatment. I must work harder to work hard.

Now, I am back to our anniversary. It sounds like one big lament and no wonder. I have highlighted all the terrible, horrible, no good, and very bad life experiences within the year. Thank God for Kate Bowler, the New York Times bestselling author of Everything Happens for a Reason (And Other Lies I’ve Loved). She has additional books, including Have A Beautiful, Terrible Day. Dr. Kate encourages honesty, transparency, and vulnerability. She writes, “Cultural pressure to be cheerful and optimistic always takes a toll on our faith and ability to express our hopes and anxieties more healthily.” There is a time to express cheerfulness and optimism and a time to express sorrow and grief. Expressions of sorrow and grief are hardly acceptable for some to hear and hardly acceptable for me to live without.

I remember when one granddaughter was having terrible, horrible, no-good, bad days. In one of my POPS Life’s Lessons, I included an example of my terrible, horrible, no-good, bad days at school as a struggling learner. I wrote:

“A school day for POPS required all my efforts to survive the day. The school was filled with hourly obstacles. Rather than feeling like a safe place, the classroom threatened my sense of potential and capability. At every turn, the possibility of an embarrassing moment lurked. The spelling bees, reading groups, and solving math problems on the chalkboard induced great anxiety and often a sense of failure. Report card day was a terrible time. Everyone was excited to share six-week grades. Not me. While neighborhood friends mingled after school, I labored over homework and test preparation.”

My granddaughter eagerly exclaimed in a follow-up face-to-face visit during a special “just the two of us” night out, “POPS, I know what you mean about having terrible, horrible, no-good, bad days. I have those days, too!” I was all ears, and she was all talk. Our exchanges represented “beautiful” and “terrible” life experiences. Cheerful and optimism were not what my granddaughter needed at the time. She became honest, transparent, and vulnerable when permitted by someone honest, transparent, and vulnerable. She left our special “just the two of us” night out healthier.

Do not get me wrong. I have cheerful and optimistic moments. Granted, they are harder to muster than ever before. My POPS Life’s Lessons for my granddaughters are delightful, uplifting launching pads for cheer and optimism. This is also true with a newly completed leadership lessons series for youth entitled Each One – Reach One: Making Differences One Person at a Time (EORO). Soon, in partnership with several friends, we will have a video training module for distribution to youth in developing countries. Our goal is to help youth, especially those from abject poverty, discover that they can make a difference in the lives of others. Our annual Make-A-Bear, Make-A-Smile fundraising project with our daughter and granddaughter brings a sense of cheerfulness and optimism. The funds purchase fuzzy friends (Build-A-Bears) for kids hospitalized with cancer. I am working on a lesson series for kids in the public school entitled Making Marlee’s Message Matter. Before Marlee died of cancer, her Make-A-Wish was to give all kids hospitalized with cancer a Build-A-Bear for comfort and care. We want to keep Marlee's wish alive and extend her reach. We also continue to find meaning, purpose, and voice working with our non-profit, Chicks for Children Foundation. Our foundation supports kids from the Kipsongo slum in Kitale, Kenya. While those cheerful and optimistic moments bring bounce in my step, hoping for favorable outcomes in the future, I am conflicted by cancer that makes the glass look half empty and the bounce temporary.

So, what, now what? I need to find a new life, a life with reimagined dreams and a life that helps me not only cope with cancer and its treatment side effects but also leap toward something without proof that I will get there. In this life, I need to pay closer attention to the beauty embedded in each day rather than dwell on unfavorable outcomes.

I awakened at 4:15 a.m. one morning inspired by Dr. Kate to find the beauty in every day that makes up a year. That’s 365 days to live within a window of tolerance where I feel stress, pressure, disappointment, discouragement, depression, hopelessness, and helplessness, but it doesn’t bother me too much. I am moved by Dr. Kate’s encouraging words to find healthier ways to handle the ups, downs, and in-between, namely the fatigue, lack of energy, and labored breathing. I want to find healthier ways to communicate with the love of my life and the one who sustains me with more tender, loving care than I allow. I want to find healthier ways to widen the breadth and deepen the depth of my relationship with God. I want to find healthier ways to recognize that I am broken in ways that cannot be fixed, but my brokenness does not mean life isn't worth living and I cannot find meaning, purpose, and voice. And I want to find healthier ways to seek the beauty of any given day while coming face-to-face with “chronic” myeloid leukemia.

There is one more “so, what, now what” introduced by Rebecca. She encouraged me to embrace that I am as strong as “we,” and the “we” includes that part of “me” who has learned to overcome, be resilient, cope, and so forth due to struggles as a learner, our son’s struggles as a learner, our son’s Guillain-Barre syndrome, the sudden death of our son’s wife, our daughter’s acoustic neuroma surgery, my Ph.D. life-experiences, a colon resection, a stent, and two recent shoulder replacements. Rebecca reminded me, “Mark, you have successfully handled adversity before, tolerated frustration, experienced the bad and ugly, and faced life’s challenges. You must revisit those thoughts and behaviors that sustained you in past adversities and reapply them to today and tomorrow’s adversities.” Rebecca was right. The same courage, determination, tenacity, risk-taking, and perseverance that helped me overcome my prior adversities can help recalibrate some of my “I can’t” mindsets to “I can.”

The bottom line is that I must learn to live effectively with CML rather than fight against cancer for years to come. The question that begs itself is, “How?” I revisit Dr. Kate's recommendation to build daily spiritual attentiveness habits. And for days that are not lovely, she encourages me to find beauty within that day. I must appreciate the strength in stillness that enables the mind to take inventory of beautiful sights and sounds. I do believe that within every terrible day, there is beauty. I can look no further than my wife, two children, Charlotte and Jim, and two grandchildren, Addison and Caroline, to find beauty. I can find beauty in my work with Each One Reach One: Making a Difference One Person at a Time, Making Marlee’s Message Matter, and the work with the Chicks for Children Foundation. I find beauty in weekly exchanges with family and friends. Of course, God’s creation is filled with miraculous examples of beauty that deserve attention.

I hope and pray that I become increasingly patient, tolerant, and understanding of my present life experiences, the good, the bad, and the ugly. I hope and pray that I find meaning and purpose within whatever good or bad happens and turn difficulties into blessings for people around me. I hope and pray never to stop sharing the life of the heavenly Spirit. I hope and pray to become more accepting of my life’s obstacles and challenges. Obstacles and challenges are constant in life, and they last a lifetime. I don’t want to let those obstacles and challenges blind me to the joy of living. However, I believe there is a tremendous compromise to a joyful life if I fail to recognize and embrace those obstacles and challenges. I hope and pray to appreciate those moments of laughter, those moments of companionship, those moments of leisure, those moments of helping others, those moments of lament, and those moments of purpose, meaning, and voice. But most importantly, I want “Just to be;” that is, I am taking a break from my hopes, dreams, and aspirations and learning to be still, silent, content, and present in every moment, just as God is present in my moments of beauty and terrible. I trust God to help make my moments of beauty and terrible matter.