Where Hope Is Found
by Julie Richardson, diagnosed with WM at age 44
March 13, 2020.
A Friday the 13th I will never forget.
On the one hand, it would turn out to be my then twelve year-old daughter’s last day of in-person school for fifteen months. By Monday the 16th, schools, houses of worship and businesses across Kentucky were either shutting down or drastically adjusting how they operated.
On the other hand, I barely remember the havoc COVID was creating, because it’s also the day I met my medical oncologist and heard, “This is cancer,” for the first time.
Since the fall of 2016, I’d been on a frustrating, exhausting, and expensive medical journey when a routine check-up discovered dangerously low hemoglobin. Almost two years of regular iron infusions followed, mostly to no avail. An excellent gastroenterologist finally discovered celiac disease was partly to blame for the anemia, but he wasn’t convinced that was the whole story, as all sorts of blood work numbers indicated that something internally was very wrong, even though I remained largely asymptomatic externally.
Finally, my body began to speak loud and clear with marked abdominal discomfort. We assumed it was a misbehaving gall bladder. However, a CT scan revealed enlarged lymph nodes — some of them taking up space abdominally and some of them floating around in other places. Within 72 hours of that scan, I was in Dr. G’s office– terrified, anxiety through the roof, and unable to comprehend that this was actually happening.
It took another two weeks to narrow it down to Waldenstrom’s. A bone marrow biopsy, an additional scan, and extensive bloodwork were all done under the cloud of COVID. I was alone for all of it. In those early days of the pandemic, guests were not allowed to visit and hospitals were rearranged in anticipation of an influx of virus patients. It was all very surreal. The hallways were empty. In the midst of their own stress, nurses were profoundly compassionate. I did frantic research on my iPhone as I sat in waiting rooms and exam rooms learning words and phrases like “immunoglobulin M,” and “kappa lambda ratios.”
The world was tilting into chaos, but all I remember is feeling as if my body was betraying me.
I am a single mother to an insightful, compassionate, and fiercely resilient fourteen year-old. Her father died tragically and unexpectedly when she was nine. Since then, every day of my life has centered around her wellbeing, my goals focused on giving her both deep roots and brave wings. When my oncologist said, “cancer,” I took a deep breath and looked him square in his dark, caring, thoughtful eyes. I said, “Dr. G, I am a single mother, my daughter is in middle school, and I need you to make sure that I am able to see her to adulthood.”
I need you to help me see her to adulthood. That’s all I cared about.
I remember that, for a moment, he did not speak. But his eyes widened, and then he slowly nodded his head, and quietly answered, “Okay.”
Every morning for the next couple of weeks, as Dr. G and his team worked to determine what kind of cancer we were dealing with and what my prognosis might be, I would sit on my backyard deck, coffee in hand, and I would cry and pray. The only prayer I remember is this, “Five years, God. Please give me five years. Please help me see her to college.”
I know now that it is far more likely I’d die prematurely from any number of other things than Waldenstrom’s. Thanks to the work of so many brilliant and determined researchers, fundraisers, and advocates, treatment options improve every year. My own deep dives into the world of lymphomas tell me that if I am going to have cancer, this is the one I’d choose.
Still, I would not choose cancer. Not for me, not for anyone I love, and not even for anyone I hate. It changes you. Levels you. Reorients your life and forces you to evaluate what matters most in ways that cannot be described unless you, too, have heard, “This is cancer.”
There have been tremendous blessings in this journey. I’ve learned to listen to my body better. I’ve had to face my own mortality in a way that has humbled me beyond measure. I’ve learned to let what doesn’t matter go–and there is so much that doesn’t matter. I’ve learned that gratitude really is a spiritual discipline and practicing it changes everything about you. I’ve learned, too, that happiness and joy are not the same things, and that it is possible to feel deep joy even as you have been brought to your knees in grief or fear.
I’ve learned the truth of the taken-for-granted saying that time is a gift and a fleeting one at that. Nothing in this life is guaranteed, except how fast it all goes. I don’t want to waste a single second.
I’ve been reminded, too, of how fortunate I am. A supportive employer, excellent health insurance, and access to world-class medical care in the city where I live have all made this more bearable. This is not true for so many who live with cancer and I am daily cognizant of that.
These days, hope, for me, is found in the daily living of a life I love more than ever, and in a world torn apart by so much hate and anger, but also knit together by so much kindness and grace.
The day Dr. G told me that my four rounds of chemotherapy had done their job his eyes lit up. He smiled so big his face mask moved. We excitedly bumped elbows and he said, “This is very good.”
In that moment, I knew that no matter what somehow I would be okay. It wasn’t the end, and that maybe, against all odds, it was actually a new beginning.
I despise having lymphoma. It has wrecked me in many ways. I also know that I am a better person for it. That alone is enough to see me through whatever Waldenstrom’s hands me.
I am not the first, nor will I be the last, to walk this road and if my own journey makes that road easier for someone behind me, I’ll be grateful.