“These numbers can’t be right.”
Those were the first words the oncologist said to me. I remember sitting there, in the little room with its terrifyingly graphic posters, relieved to hear his assessment of the lab report which had been sent to him by my family doctor. No one, he assured me, especially of my age and seemingly good health, would legitimately have the types of off-the-charts-terrible numbers he saw, and he suspected improperly calibrated lab equipment. So, I was sent for a retest, and then home.
A few days later, my phone startled me out of a deep slumber. It was not nighttime, or even close. It was the middle of the day, and I had, once again, cut my work day short because of overwhelming fatigue.
It was the oncologist. The numbers came back, and they weren’t as bad as the last ones.
They were worse.
If I live to be 100, I will never forget the next words I heard, as I tried to wrap my sleep-addled brain around what was happening.
“You have cancer. Some kind of lymphoma, but we don’t know exactly what we’re dealing with. You need to come back in as soon as possible.”
If that moment had been on a movie screen, that’s when you would have heard a record scratch or swelling, dramatic music.
But it was no movie, and there was no music. It was my living room, silent and small, and I sat there on my couch after hanging up, and tried to breathe.
Nothing can prepare you for a cancer diagnosis. Nothing.
I was the only one home, for which I was thankful. My son was in college, and my daughter was a Sophomore in high school and had extracurricular activities after school. When she came home that day, I didn’t mention the news.
She had her own struggle at the time, in the form of an eating disorder. While my marriage had been unraveling, and I was still reeling from the sudden death of my best friend of 20+ years, my daughter had simply begun fading as she tried to cope with everything going on around her.
Before it was all said and done, she would be admitted to an inpatient facility, where she would be for months, in a desperate effort to save her life. I was terrified that any bad news may push her over the edge again.
My son was doing well in college, but I knew he, too, battled anxiety and depression, and I didn’t want to derail him, either. It had been a rough year for all of us, and I was determined to minimize their stress, especially when I had so little information.
And then there were my parents. My mother had only recently undergone multiple surgeries after learning that she had advance-stage colon cancer. She and my father have been married for fifty years, and I watched both of them suffer through her diagnosis and treatment. How was I supposed to burden them with this news when her health was still so precarious?
I tried my best to remain calm and not panic, which is all but impossible in this sort of situation. The death of my best friend, my confidante, my soulmate, now seemed like a cruel joke, as she would have surely been my rock as I struggled with the news. Instead, it was mine to bear alone. And eventually I did, my usual tendency towards pragmatism and a no-nonsense approach to life kicking in, and getting me through the days. I finally told everyone from family to friends to coworkers about my diagnosis, and assured them I would still be my usual feisty, fierce, sometimes-impossible self until I was unable to be, cancer or not.
In a strange way, the news was a relief. I had been suffering from a variety of symptoms and strange occurrences for more than a year. I fell down stairs regularly. I was exhausted beyond any degree of normalcy, all the time. My gums would bleed, but not like normal gums would. They would rupture, with no provocation or notice.
I woke up with a headache one morning and it never went away. Ever. It was a chronic, 24/7 pain that no medication would touch. My vision became impaired. I viewed all of these things as isolated incidents with varied and benign causes, as we tend to do, never imagining that they were all related to the cancer that had slowly consumed my body.
Tests followed. So many tests, so many new and confusing acronyms: PET, CT, MRI, BMB, all scheduled rapidly, so dire were my numbers. The bone marrow biopsy terrified me most of all, after I read up on the procedure. As someone who devours information as a way to feel some sense of control in out of control situations, I had done exactly what the doctor told me not to do, and Googled. Everything. If it was Google-able, it was Googled and re-Googled.
I won’t bore you with the details, but a description of how bone marrow biopsies are performed would be excellent fodder for a Halloween horror flick. Gruesome stuff, indeed, and I had what is sometimes referred to as a “delicate constitution” when it came to needles and such. As Daffy Duck once observed, “I don’t like pain. It hurts me.”
The doctors were stumped; the results of all the tests painted a puzzling picture with a long list of differential diagnoses. Only after the bone marrow biopsy were they able to give my cancer a name. And it was a doozy: Waldenstrom’s macroglobulinemia.
I often joke that the worst part of my cancer is spelling it. There are folks who are surprised, and sometimes appalled, that I joke about my cancer. I understand their reactions, but here’s my take. The demographic typically affected by Waldenstroms macroglobulinemia is elderly men, and I am neither elderly nor a man. So, I figure if I’m going to be an anomaly with a funny-sounding cancer, I get to do with it what I like.
I changed providers during this time, as I felt like my care was an afterthought to profitability and patient turnover at the first cancer center I visited. Anyone who knows me will tell you I am not a “hand holder.” My first full sentence as a toddler was “I do it,” and that has been my mantra ever since. I deplore dependency, and tend to just want to isolate myself when problems arise, and deal with them in solitude, at my own pace.
A cancer diagnosis, however, is different. A cancer patient should never be made to feel she is alone, or, worse, just a number. So I became my own advocate, and changed healthcare systems. It was the best move I ever made, and I firmly believe it saved my life, so slapdash and impersonal was the previous facility. In my new surroundings, I felt cared for at every level.
There was chemo education, financial education, support groups, and a doctor, Fahd Quddus who, with his team, tirelessly answered my questions and showed endless compassion, knowledge, and positivity. It makes all the difference in the world to feel confident in one’s care, and I remain convinced of the mind-body connection. When you are able to have total faith in those to whom your life is entrusted, you are able to fully focus on your healing.
And so my treatment began, in May of 2019. Six rounds of chemo, with two different drugs. I found it both amusing and amazing when I learned that one of the drugs was a mustard analog and the other derived from mouse ovaries. I remember laughing out loud during my chemo education at the absurdity of some scientist in a lab looking at a mouse ovary and thinking, “Y’know, I bet this would cure that funny-sounding blood cancer.”
My first day of treatment, I learned many things, including the term “Bena-drunk.” This is the near-paralyzing state that intravenous Benadryl leaves you in, and the only other term I can think of that comes close to describing the feeling is ”trippy.”
I could hear everything around me but could not move or open my eyes. Unfortunately, I also learned that day what the term “adverse reaction” really meant. I had been forewarned that the first drug could potentially cause a severe reaction, but for most people, it would only happen once.
The drug was administered by a nurse in full hazmat gear, due to its toxic nature, (a visual that certainly did not inspire peace of mind,) and a few minutes after the drip started, I began to get cold. I could barely mutter “Get the nurse,” but I knew something wasn’t right. Then the convulsions started.
The feeling of being helpless to control my own body was the most terrifying thing I had ever experienced. The nurse rushed back over and stopped the drip, and slowly the convulsions subsided. I was crying and confused and scared, not just of the reaction, but that I wouldn’t be able to go on with treatment.
But, true to what I had been told, the reaction was a one-time event, and I continued on with my chemotherapy. One thing that comes along with chemo, in many cases, is a hefty dose of steroid. This nefarious little drug, affectionately nicknamed “Dex,” is given, in most cases, to mitigate the severe nausea and vomiting that come along with treatment.
In the case of certain blood cancers like mine, it is actually part of the treatment itself. Regardless of the reason for its use, it has the unfortunate side effect of causing terrible insomnia. “Wired but tired” is a phrase frequently used to describe the bizarre juxtaposition of being exhausted from treatment (and the cancer itself) and supernaturally energized from the steroid, all at the same time. It is a phenomenon I wouldn’t wish on anyone.
By the time of my treatment, both my children were home for summer vacation. Any remaining energy I had during those months was spent putting on a happy face and concealing my fear and physical exhaustion from them. Because of the insomnia, I found myself rattling around the house at times that can only be described as “insultingly early.” My house was small, and my children light sleepers, so I had very few options as far as how to pass those wee hours of the day.
One morning I decided to write.
This was not an earth-shattering development, as I had enjoyed writing from the time I learned to hold a pencil. There is nothing I love more than a good story, and I enjoy telling them as much as hearing them.
But what to write?
It might seem like the obvious answer was to journal, write about my cancer battle. And I’m sure some would find that kind of thing cathartic. But that was the last thing I wanted to focus on, as the entire point of writing was to have an escape from the seemingly-inescapable spectre of uncertainty that loomed large around me at all times.
“Where do you get your ideas for stories?” is a question I am frequently asked, and the answer is simple. They come to me, like gifts borne by some unseen giver. I rarely spend time in stereotypical author fashion, staring desperately at a blank page, wracked by writer’s block. Rather, the ideas descend upon me, usually at some inopportune moment, like in the shower, or barreling down I-85 in an ill-considered effort to tempt fate by daring to travel its treacherous path.
Charles Dickens’ father, in the book “The Man Who Invented Christmas,” referred to this phenomenon as “the divine frenzy,” that manic fugue state that comes over a storyteller from seemingly nowhere, with the utmost urgency that words be put to paper that very moment, lest they disappear forever.
I was drinking coffee around 3 a.m. one of those days when it came to me. Christmas! Of course, warm, wonderful, hopeful, magical Christmas! Nevermind that the temperature was predicted to hover in the 90s most of that particular day, Christmas MUST be the theme, the basis for whatever I was to write. Having come from a family whose enthusiasm for holidays verged on the pathological, I had spent my childhood learning to love a celebration. And no time in my childhood was there more pomp, pageantry, and pizzazz than at dear old Christmastime.
As quickly as the theme had come upon me, the purpose made itself known, too. I had a clear line of sight to my daughter’s bedroom door, shut tight against any disturbances from the rest of the house. I could envision her, though, blonde hair spread all over her pillow, stuffed animals taking up more space in the bed than she did. And occasionally, I would hear my son downstairs, coughing or laughing and mumbling in his sleep, as he had since he was a little boy.
It would be a story for them. A Christmas gift from their mother who didn’t know if she would see another Christmas at that point. Cancer makes you instantaneously and acutely aware of your own mortality, and I wanted…needed…something to leave them that could give them a little joy and peace when I wasn’t around anymore, whenever that might be.
I wish I had a better, more otherworldly explanation for how the exact idea for the story itself came to me, but, as I said, that part is usually a little anticlimactic. I was just thinking Christmas thoughts and my mind wandered in circles for a bit. I imagine the idea may have taken root, in part, because I had recently begun dating someone (who, ironically enough, also had blood cancer,) and we were firmly ensconced in the starry-eyed romantic early days of our relationship.
He would remain a part of my story for several years before we parted ways, and I was grateful to have someone who had traveled the road I was preparing to navigate. I’m not one to wax philosophical but the Scripture about everything having a season rings truer to me as the years pass.
The love story of Mr. and Mrs. Claus is a topic that has been sorely neglected throughout the centuries, as far as storytelling goes.
While every other conceivable topic related to Christmas seems to have been immortalized in the form of poems, short stories, and other literary tributes, the chronicling of what, to me, seems to be a cornerstone of the season’s traditions, has been more or less ignored.
So I would write about love and Christmas in a time of fear and summer sun. Every morning, when I awoke from whatever little sleep the gods of slumber had granted me, I would fire up the Keurig, and sit down at the kitchen table to write.
From the first word, the story seemed to materialize of its own volition, as though my presence was merely as a vessel, a means for the pent-up tale to finally insert itself into immortality. In a few short days it was roughly drafted, a few weeks later, it was complete.
I never spoke of the story to anyone while I was writing it. It was never meant as a public offering, only a gift for my children.
I would write a little, cry a little, laugh a little, and drink a little more coffee as I wrote, marinating in Christmas memories to maintain the momentum and keep myself distracted from the side effects of my treatment.
Months passed, and, by October, my treatment was complete. I knew by then that, barring any unforeseen circumstances, I would be around to see another glorious Christmas. So I printed two copies of the story, bought cheap red folders as an afterthought, and tucked them away among the bountiful offerings beneath the tree.
I remember sitting there that Christmas morning. Again, I was up in the wee hours, but this time Dex wasn’t the culprit. I was up early to take in the extraordinary silence of that magical day, the quiet peace and contentment of having the two people I loved most in the world sleeping soundly within my reach. That year, and every year since, time has been the greatest gift I’ve received.
I sat there for what felt like forever, frozen in time and bathed in the cheery colored lights of the tree. The red folders were all but lost under piles of boxes and bags, the oversized packages with their cheery colors and textures overshadowing my humble gift. But my hope was, and is, that my children will one day share the story with their own children.
And that they will always know how precious every day is. And from that little story came a yearly custom. Even though they are now grown, they receive a Christmas story, in a red plastic folder, every year. Cancer took many things from me, but it also gave me so much: gratitude, perspective, and a new tradition born out of the hope and magic of the season.
About the Author: Shauna is an Upstate SC native and graduate of Converse College and ETSU. With a passion for both history and writing (and an advanced degree in Appalachian Studies that her parents SWORE she would never use,) she is excited to be able to share stories of the colorful people and places of the South. In her spare time, she enjoys archery, rollerblading, and looking for that next great story.