In 2010 I was diagnosed with a rare blood cancer called multiple myeloma at the age of 43. Our six kids were ages 2-15 at the time. Even though I know adversity is part of life, a cancer diagnosis was a complete shock and surprise. I'm not sure why I thought I was immune - one in two men and one in three women will acquire cancer at some point in their lifetime. I am not alone. I hoped adversity would never rain on me in such a downpour, but apparently it was my turn. How could I best weather the storm? During the most difficult times, I decided to ask myself three questions that have become essential in helping me manage the challenges of cancer - then and now. 1. What am I supposed to do? 2. What am I supposed to learn? 3. Who am I supposed to serve?
When the doctor told me "You have cancer," I felt like I was having an out-of body experience. Could this really be happening? After the initial shock wore off, I realized that staying in a state of denial didn't have an upside. I needed treatment immediately. The first question kicked my husband and I into gear. What do we do now? Where should I get treated? By which doctor? What tests did I need? What should my treatment be, especially because the experts disagreed on treatment approaches? Our first question forced us to take immediate action. We evaluated our options as best we could with little to no information about a cancer we'd never heard of. The local oncologist who wanted to start me on treatment (that Friday) saw 5 myeloma patients while a myeloma specialist in our hometown treated over 400 per year. Hmmmm. Looking back , that initial decision to be treated by a specialist was a critical step in lengthening my life and getting my best possible outcome.
One of the craziest parts of the diagnosis was the shift in the pace of my daily life. My typically rushed days ground to a halt. I immediately started treatment and was removed from my mothering responsibility at the peak of my mom career. Instead, I had long infusions in the clinic, long periods of time feeling lousy and long periods just resting. The "free time" I had during my stem cell transplants gave me a Thoreau-like "broad margin" (without the long, scenic walks). I had time to ponder and reflect on my life and its purpose. I agree with French Philosopher Pierre Teilhard de Chardin who said, "We are not human beings having a spiritual experience. We are spiritual beings having a human experience." I don't believe that this life is the end, but a school and proving ground. If adversity was my teacher, what eternal lessons was I supposed to learn? I decided to keep track of new insights, so I started a personal blog. While writing, it struck me that I never asked what I was supposed to learn when things were going well. Perhaps there were things I was incapable of learning when life was rosy. My "new normal" came with a realization. Myeloma could rob me of my life and health, but I wouldn't let it rob me of my second greatest gift - my ability to choose. I had already used my agency to select my treatment. Now I could choose how I would respond to adversity. I could fall into despair and no one would fault me because the suffering was real. But could the experience strengthen me instead? I could let it go either way.
Anne Morrow Lindbergh said: “I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable” (“Lindbergh Nightmare,” Time, 5 February 1973, 35).
It's hard to see when you're in the eye of the tornado, but now I notice how our family is calmer, smarter, stronger and more discerning. We have collectively increased our capacity and patience. Most importantly, because the challenge was so severe for such an extended time (even today) our learning was permanent. I think Harry S. Truman was right when he said, "“The reward of suffering is experience.”
The final question is the one I like the most. It's so easy to retreat into self-protection mode when pain hits. I am a master at this. Some days, it's a struggle to survive and shutting out the outside world is how I cope. But on other days, it's time to look outside myself. My first day of chemo, a friendly young woman my same age (and the same number of kids) came to my infusion chair and taught me how to tie a head scarf to cover my soon-to-be-bald head. She was happy and bright. She had just undergone two stem cell transplants while in a wheelchair because she had a hip replacement due to the myeloma bone damage. She had high risk del17p myeloma. Her simple and cheerful service completely changed my outlook. Instead of crying my way through my first day, I met a new friend who became my mentor. Like Sarah, I try to ask the question "Who needs my help today?" It may be someone in the clinic who needs reassurance. It may be my husband or kids who need to know I love them. I can look for opportunities to serve wherever I am placed; whether that's in the infusion room, at home in bed, or at a computer writing articles that will benefit other patients. No one could pay me to do the work I do for the Myeloma Crowd. I am motivated to teach patients how to get better outcomes, how to find a myeloma specialist, how to accelerate research by joining clinical trials, how to evaluate their potential treatment options and how to find a cure. And this brings me incredible joy. I am blessed to have sustained a remission for several years, but no matter what comes next, I'll keep asking these three important questions. Because of the adversity and not in spite of it, I've been changed forever.
"The beauty of the soul shines out when a man bears with composure one heavy mischance after another, not because he does not feel them, but because he is a man of high, heroic temper." Aristotle
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.