The New Normal
My life as a cancer survivor
Molly Fahy
Lauren Menker
“Mama, what is that girl wearing on her face?”
My mom and I had just seen a theatrical production of “Charlotte’s Web,” and for four-year-old me, the mixture of sweat, dust and a hint of grease from the stage lights created a repulsive scent in the packed theater. Chemotherapy had thrown my senses into disarray – foods I once loved no longer tasted good, and one whiff of a bad smell would trigger a wave of nausea. So, I wore my Mickey Mouse medical mask to block it out.
After the show, my mom and I waited in the exit line when a little boy pointed at my mask, asking his mom about it. He wasn’t unkind; he had displayed a child’s simple curiosity when confronted with something unfamiliar.
When I was four and a half years old, I was diagnosed with Acute Lymphoblastic Leukemia (ALL), the most common type of pediatric cancer. ALL is a blood cancer that begins with a genetic mutation in bone marrow cells and quickly spreads into the bloodstream. There, the cancerous cells divide into leukemic white blood cells called lymphoblasts, which multiply rapidly and overtake healthy white and red blood cells, disrupting the body’s ability to function properly.
My mom always says she sensed something was wrong weeks before the blood test returned positive. Dark, unfading bruises appeared out of nowhere and my signature freckles disappeared. I also experienced a persistent ear infection and developed a strange rash that looked like red pinpoints covering my body (later, we discovered its scientific name was petechiae). These symptoms are common in ALL patients as the multitude of lymphoblasts lower platelet levels. (Platelets are small cell fragments flowing in the bloodstream that allow blood clotting.)
On Jan. 6, 2009, I was admitted into Nationwide Children’s Hospital in Columbus. As if all this wasn’t bad enough, it coincided with my father’s birthday. Instead of celebrating, my dad carefully carried me into the emergency room. (And I do mean carefully – I would’ve bled out from one tiny cut.)
Initially, my immune system was slow to respond to chemotherapy. However, its effects on the rest of my body were undeniable: I lost weight, battled constant bouts of nausea and my hair, including my eyebrows, fell out.
Pediatric cancer is rare, with only 16,000 children in the U.S. diagnosed each year – and an even smaller percentage of those cases being ALL. In the early 2000s, treatment options were limited, partly because there weren’t enough pediatric patients for extensive drug trials. That meant my family received numerous opportunities to participate in new trials for different types of chemotherapy and treatment combinations. These trials were tempting, especially since I hadn’t responded well to the initial standard chemotherapy pediatric patients received.
For most forms of leukemia, patients typically enter partial remission – a steady decrease in cancer cells – within the first few weeks of treatment. However, after running a blood test, we discovered I had a genetic marker called the Aneuploid blast population (D.I.). At the time, studies showed that pediatric ALL patients with a D.I. of 1.16 or higher responded better to treatment. My D.I. level was 1.206.
Instead of committing to a new drug trial, my parents and doctors opted for a higher dose of traditional chemotherapy. This came with serious risks, though, and my doctors feared it could severely impact my reproductive organs and heart.
After five months of treatment, my doctors announced that I had entered remission. During those months, I underwent three operations, including one where I woke up mid-surgery, nearly flat-lined, lost my beautiful red, curly ringlet hair and was left with a mountain of scars.
But at least I was declared in remission on Cinco De Mayo! Who doesn’t love tacos? (Actually, at the time, the only things I could stomach were cheese pizza and an overly green banana.)
Although I was in remission, I still couldn’t do the things I wanted, like start kindergarten. I had planned to go once I turned five, but doctor appointments to monitor my remission every week pushed that idea back a whole year. To keep me on track, my mom, a former teacher, taught me to read and do basic math at home.
I had no friends or siblings to play with; I was an only child living in a small, rural town far away from my cousins. So, my world became movie musicals. I watched “Singin’ in the Rain” and “Seven Brides for Seven Brothers” on repeat. The music, colors and costumes made me forget about my life for a while, especially the tiredness and sickness. These movies made me want to get up and dance and sing, even if my body didn’t feel like it. Everyone always wonders why I have such a passion for music and theater – this is where it began.
I was also fortunate to have a “wish” granted by the Make-a-Wish Foundation. Nationwide Children’s nominated me, and before I knew it, two Make-a-Wish ambassadors visited me, asking what my grand wish was. Of course, I wished for a pink playhouse in my backyard, and honestly, these coquette and cottage-core girls on social media would die for how frilly and pink it was. Outfitted with play-kitchen furniture, my pink playhouse became my little space of refuge – a space to relax, do crafts and let my creativity run wild.
Through the Make-a-Wish Foundation, I also had the opportunity to attend a gala at Ohio State University, where I sat at a table with Ohio’s lieutenant governor and former Ohio State football head coach Jim Tressel.
When it came time for me to start kindergarten in the fall of 2010, I had just turned 6 years old, making me the oldest kid in my class – a fact I was keenly aware of. My hair was just starting to grow back into a curly, afro-esque style, with pieces sticking out in every direction.
On the first day of class, my teacher gave a presentation to my classmates about my diagnosis and how I might need special care. To my classmates, I was already “different.” (I’m not calling out my teacher, though. I loved Mrs. Pauley, and she’s probably one of the best teachers I’ve ever had.)
From that year until well into second grade, I missed a lot of school for appointments and unexpected hospital stays. My immune system was still severely compromised from chemotherapy, so the flu and strep throat would knock me out for weeks. My parents picked up the work I missed from school and had me do it at home so I wouldn’t fall behind. I even managed to get good grades! If I were to trace my work ethic to academics, it would probably originate from this.
I attended a tiny school, so most people knew I had cancer, especially after doctors from Nationwide Children’s came to give a school-wide presentation about it. But the following year, my school was consolidated with three other elementary schools. Suddenly, I was surrounded by classmates who had no idea about my diagnosis.
And I decided not to tell them.
Eventually, it came up, especially when I became close with someone. But with the rest of my classmates, I just carried on with my work and continued to be the introverted music girl. I didn’t want pity or special attention. I didn’t want them to treat me differently. For so long, I had received special treatment because I was fighting cancer; I was viewed as a face and an image of the cause. I just wanted to be appreciated as a human being.
I spent 12 years of school with the same 100 people, and when I say that about 70% of the class didn’t know I survived cancer, I’m not exaggerating. It wasn’t until I gave a presentation about leukemia in my anatomy class that most of them found out. Some were genuinely shocked they hadn’t known.
That’s because I’ve strived to lead a pretty normal life. When people are diagnosed with cancer, they can usually separate their life into the before and after. But no one talks about how, when you’re a 4-year-old cancer survivor, you don’t remember the before – you only remember the after. And that “after” becomes your normal life.
So, what is my normal life? It’s pretty much the same as everyone else’s. I just go to the doctor a little more frequently.
Every summer, I have my big annual appointment at Nationwide Children’s Hospital. (Yes, I am 20 years old, but I’m one of their few patients who has been in remission without relapse, so they like to keep me around.) I get blood tests, and every six years, I need an echocardiogram, which is an ultrasound of my heart, to ensure it is growing and functioning correctly.
This year, I celebrated being 16 years cancer-free. Technically, I am considered “cured.”
But there’s no cure for the lingering effects cancer has on me.
I can never donate blood to the American Red Cross. That means I can’t give people a service I received several times myself: blood transfusions. And no one can make me forget the moment, at 15 years old, when a doctor told me that freezing my eggs might be one of the only ways to have children. The scar across my chest and the hole-like scar at the base of my neck from my chemotherapy and medicine tubes have barely faded, and part of me thinks they might always be visible.
I don’t want to sound like I’m ungrateful. I’m one of the lucky ones. There are so many families who have lost a loved one to cancer or have a family member with persistent or recurrent cancer. I’m blessed to live my beautiful, happy life. But the person I am today is not the person I would have been without my cancer diagnosis. Would I be obsessed with performing perfectly in school? Would I be passionate about music? Art? Maybe, but I’ll never know.
For 16 years, I’ve been going through life as someone different. But I embrace it. I love who I am, and a part of that is because of my cancer.
I love that I get to tell my parents I love them, that I get to read my collection of paperback books and that I get to smell the fragrance of peach roses. I love my life, and 16 years later, I’m grateful I’m still here to enjoy it all.
