Published on May 12th, 2013 | by Kate Albert Ward6
Leukemia Girl in Chemo Land
Despite being a two-fold mutant, I was never recruited to Xavier’s School for Gifted Youngsters. My first mutation gave me bright red hair and evident powers from birth: the facility with which I absorb vitamin D, the strong visual signal I emit for easy location in a crowd, my herculean resistance to anesthesia, and my leprechaun-like-knack for finding the gold at the end of the rainbow, albeit metaphorical.
As Marvel makes clear, the life of a mutant is fraught with challenges and superpowers often come with unpleasant side effects. This truth is pronounced in my second mutation. I mutated again when I was barely eighteen, giving my white blood cells the power to replicate quickly but never fully mature, overrunning my circulatory system and putting my body at war with itself.
It was this mutation that gave me my X-Men worthy epithet, Leukemia Girl.
Like many stories of this kind, the realization of my difference came to me slowly and as a shock.
The first sign of my body morphing was an extreme sense of fatigue. But I attributed this to an overpacked schedule, filled with high school, Running Start classes at Tacoma Community College, working in a restaurant, babysitting, playing the lead in a play, getting ready for a dance competition, and being an outgoing and social teenager.
One fateful Tuesday, my school had a blood drive and I decided I would try to master my needle phobia while contributing to a good cause. After much hesitation, I finally let the nurse prick my finger to check my blood’s suitability for donation. The quality of my blood fell far from muster – red blood cells should compose between 36 and 45 percent of the blood and my count was a mere 18 percent. The nurse wrote me a note to take home and implored that I see a doctor. I ignored any sign of gravity in her voice, and glibly agreed.
Thankfully, I was at that age when I reveled in a little drama and took the note home to show my mom, not because I thought there was anything to be worried about, but for the novelty and a mystery of it.
I went through a series of blood tests over the next two weeks, but the cause for my anemia remained elusive. Finally, I went to the hematologist on April 7, 2003, the Monday of spring break my senior year of high school. When I fainted in the hematologist office, I assumed that my needle phobia was to blame, never suspecting that an excess of non-functioning white blood cells were pushing out the red blood cells I needed to carry oxygen to my brain.
When my dad brought me home from babysitting later that day, I found my mom and sister crying on the couch. In my ever-thoughtful and tactful manner, I sarcastically blurted out, “What? Am I dying?”
My mom just started crying harder and asked me to sit down. Whoops. Definitely not the right thing to say.
With the information we had at that point, gathered from a brief phone call from the hematologist, we actually didn’t know the answer to my reckless question. All we knew was that I had Acute Lymphoblastic Leukemia (ALL), a fast-onset blood cancer common among children and I had an appointment with a pediatric oncologist at Mary Bridge the next day.
That evening, while I was out with friends, my parents made the mistake of looking up my disease in an ancient medical book we had lying around the house. This was a seriously bad idea. Thankfully the prognosis for leukemia is vastly better than what it was forty years ago. It used to be that a patient would be sent home to spend time with friends and family for the few weeks to months that s/he might have left. My parents threw away the medical book.
When we went to my appointment the next day, we learned that standard-risk children with ALL were given an 85 percent chance of survival. Having turned eighteen the month prior, I was considered high risk and given a prognosis of 75 percent. In very simplified terms, I had a 1 in 4 chance of dying within the next five years. If I hadn’t been high risk, I would have qualified for a trial treatment because I had an unusual mutation. If I remember correctly, my nine chromosome had jumped onto my fourteen, which my oncologist said he had never seen before.
I know its totally weird, but I’m quite proud that I have a strange mutation. If I must be a mutant, I don’t want to do it like anyone else has before.
My oncologist, who wore a SpongeBob tie and had a habit of shifting his weight from foot-to-foot while swishing his bushy mustache from side-to-side, outlined my two-year chemo regimen: I would begin a fairly common protocol of really heavy chemo for about six months, medium for another six, and then a year of pills peppered with spinal chemo injections – a phase I would come to call “chemo-lite.”
Dr. SpongeBob wanted to admit me to the hospital that very afternoon. Thankfully, we had caught the leukemia early, which allowed me to negotiate for one more day with my family at home – one more day to be normal.
Being eighteen, by the way, not only made me high risk, but also disqualified me for Make-a-Wish. I can’t really complain though. I was between adulthood and childhood, which meant I could handle the chaos of treatment with a certain level of maturity, but I was also still naïve enough to approach everything with a healthy dose of stupid optimism. Stupid optimism is extremely useful for accepting the fact that you are filling your body with poison. My nurses in the hospital would essentially breakout hazmat suits – gloves, gowns, goggles, and masks – to protect themselves from the toxic liquids they were pumping into my body.
When it comes to cancer, kryptonite is the cure. It seems that the goal is to bring you as close to death as possible and then bring you back to life. Chemotherapy kills any rapidly growing cells in your body in order to subdue the cancer, but it does so indiscriminately. Chemo suppresses the immune system, allowing opportunistic infections and diseases to take advantage. Leukemia patients undergoing treatment are actually more likely to die from pneumonia than the cancer itself.
Other than the first night after my diagnosis – when I was left to wallow in the unknown, wondering if I would be told I only had months to live – I never really thought I was going to die. Even as I was repeatedly admitted to the hospital, lost my hair, was constantly nauseous, couldn’t eat because of sores lining my mouth down to my stomach, lost weight, lost strength, was covered with swaths of purple spots, endured bone pain and feverish chills, swelled here and shrank there– why should death cross my mind?
When I was at my weakest, just a sliver of my former identity, I began to wear the mask of Leukemia Girl. My brother was the first to call me by that name, and though my memories from that time are rather hazy, I associate this title with laughing at the absurdity of my frailty. I would be asked to demonstrate my jumping skills, and my family and I would fall into fits of laughter when, try as I might, I would clear less than an inch off the ground.
As Leukemia Girl, I clearly did not jump off buildings to rescue kittens from burning trees or any such nonsense. Not to inflate my own ego here, but my power as Leukemia Girl was more like Professor X from X-Men, whose powers allowed him to sense the location of the other mutants in the world. I became ultra-aware of my community, as friends and strangers alike drew together to support me and my family.
An old friend recently reminded me of the clarity I had as Leukemia Girl, quoting something that I have no recollection of saying. When he was visiting me in the hospital, he asked, “Why you?” I responded, “It should be me. I have the kind of support that can get me through this.”
I had three teams walking at the American Cancer Society Relay for Life that year: my friends from Wilson High School’s show choir, my church youth group, and my co-workers from Anthony’s restaurant. Flowers were left on my doorstep, my church bought my family a computer so my mom could work from home, meals were provided, a benefit CD with original music was made for me, hats and quilts were bestowed in abundance, and cards of encouragement wallpapered a room in our house.
It is from my community, my family, and my faith that I derived my strength.
This month marks ten years since my diagnosis, prompting a personal season of reflection. As I consider not just what I went through, but who I was ten years ago, I find that there are some attributes of Leukemia Girl that I wish were still surging through me with the same force: the gift of self-forgiveness, power of patience, acceptance of my own limitations, and the ability to slow down and do nothing – just be.
And weakness has a way of forcing you out of self-reliance – it is okay to ask for help. Likewise, trust in something bigger than this life comes easier while in a state of helplessness. How is it that I never worried about death, but now I worry about saying the right thing, getting every last thing on my to do list checked off, baking the perfect pie, and so on and so on?
Though I have intentionally left Leukemia Girl behind in some respects – for some of my friends and acquaintances, this may be the first time you are even learning about my medical history – I am happy with who I am and where I have ended up.
In this city, I find a source of energy that continues to pulse through my veins, allowing me to flourish and, I hope, give something back.