NOTE: Different pictures during my cancer journey are sprinkled throughout today’s piece.
“That person must be a leukemia patient,” I said whenever I saw a bald-headed person prior to my diagnosis. I didn’t know much then about leukemia, just that the disease stripped people of hair.
“When will I lose my hair?” I nervously asked doctors.
“Not everybody loses their hair,” answered one of my oncology doctors during an appointment to make treatment plans. “But most people experience hair loss a few weeks after chemotherapy. Hair loss is a good sign,” he continued. “It means the drugs are working.”
I might as well have had a bad case of the flu, for all I knew. Nobody told me about the possibility of treatment not working to put leukemia into remission. Failure was never an option. Not once did I consider that the medicine would not restore my health. I trusted the doctors and drugs completely. The cliché never rang truer for a person, Ignorance is bliss.
I was given pills called Altrans Retinoic Acid (ATRA) before chemo began. One out of every one hundred people was reported to experience side effects. I was the one. My swollen face turned a light shade of orange and was covered with red bumps.
“I look like a pumpkin,” I said after awaking one morning to see my Dad staring at my face with alarm.
I was homeschooled for the first time in all my years of schooling, too sick to attend my last year of middle school. I took algebra one because I tested into it during the end of seventh grade; I often found the subject difficult and frustrating to comprehend. Being a self-taught student did not help the matter. The new school situation was also not helped by the fact that my teacher often forgot to come to my house.
I had surgery for a Broviac placement the day before chemotherapy began. A Broviac is a central line that sticks out of the chest and eliminates the need for IV needles. I was desperate for a Broviac by the time of the surgery because I was poked so many times. I hung a sign over my bed that read:
I’m sick of getting poked,
I want a doctor with the knack,
To give me the surgery
For a Broviac!
My biggest initial concern, losing my hair, turned out to be the least of my problems. I wore a clown wig to a doctor appointment before losing my hair from harsh chemotherapy treatments. I woke up each morning with hair on my pillow. A handful of hair slid easily out of my scalp each time I barely tugged. I finally made a decision to have my head shaved several days after my hair began falling out. The razor left a tiny bit of stubble on my head.
“Your head smells like a baby’s head,” Carrie and Sarah, who loved to smell my head, told me.
At first I was embarrassed and uncomfortable with my bald head because I thought people would make fun of me. I even tried sleeping while wearing a baseball cap. As time went on, I walked around my house without a baseball cap on my head every waking moment. I liked to rub my soft head. Some nights I woke up with my cat, Lacey, curled around my head. My Mom snapped pictures of me posing with my bald head so I remembered what it was like when hair grew back.
I was unaware of the severity of my disease. A few kitten scratches on my hands became infected and landed me on Seven West for eight days. My weakened immune system made me susceptible to catching all kinds of sicknesses other people easily fought off. I stayed away from places where large groups of people gathered, like church and malls. I experienced lots of drug reactions and allergies. I should have realized the seriousness of chemo upon seeing nurses enter my hospital room donning protective gowns and sterile gloves as they administered the life-saving but damaging drug.
My Broviac was removed after four months. The cuff holding the Broviac in my chest dissolved. I was tired of the Broviac by then because the line made surrounding skin itchy and irritated. Sleep at night was light because the Broviac could come out if it was rolled on. Also, activities like riding a bike or rollerblading were too risky because falling with a Broviac was dangerous; the line could be yanked out.
“I can remove it right now in an exam room if you want to,” the surgeon said. I agreed, eager to be freed from what I sometimes called a “leash.”
The surgeon pulled the long tube out of my chest on a table in an exam room. I was surprised to see how skinny and long the white tube was as it reached a length of about four feet. I felt a burning sensation as he cauterized the hole in my chest. The usual procedure for Broviac removal involves giving a patient general anesthetic in an operating room.
The Make-A–Wish Foundation sent my family on a vacation to Hawaii in March 1998. The trip was my first long ride on an airplane. We stayed in a condo in Kona, Hawaii. We went snorkeling, whale watching, deep sea fishing and parasailing.
One afternoon I was pleasantly surprised to hear a comment from a woman behind the counter of a shop in Kona. “Your haircut is so cute,” she commented, thinking my short hairstyle was my choice. Her comment boosted my confidence about my short hair.
I finished eighth grade at home. I was not well enough to attend public school with so many germ-carrying students who would put me at risk for illnesses.
I began high school my freshman year and reunited with my classmates. My hair grew back curly (it was called “chemo curl”). Not knowing what else to do with it, I plastered my head with a cheap pink bottle of mousse from the local drugstore.
“Are you on the swim team?” was a question I heard from many students because my hair always looked wet.
I tested out of the required high school swimming class by taking a proficiency test months earlier. The last thing I wanted was my hair drying after swim class and giving students a full view of what I called “Kramer hair” (inspired by the character Kramer on Seinfeld). My new head of hair was called “Kramer hair” because of the Afro-like, untamed craziness of each strand when combed. Having no choice but to accept my new ‘do, I performed a short skit as Kramer that my Mom recorded on video. I burst into the front door of my house and talked excitedly and rapidly, doing my best Kramer imitation. I sloppily poured a bowl of cereal and shoved a bite into my mouth as my Kramer hair sat atop my head in its usual state of unruliness.
Following my first post-chemo haircut before a junior varsity basketball game, I had the hair stylist ruin my hairstyle by soaking my hair with water before I left. I was not used to seeing my hair dry and soft.
“Amy, can I pull your hair?” a classmate named Kevin asked in biology class one day. I said okay and he tugged on the ends of my hair, probably thinking it would come out. He, like many other kids, didn’t know that chemo causes hair to fall out, not leukemia.
I played soccer in the spring. Having never played the sport before but being athletic and quick to learn the game, I was soon moved to varsity. I found that no matter which level I played, my legs were always decorated with green and purple bruises. A foreign exchange student from Brazil played soccer named Juliana Pacheco. One evening she ate dinner at my house and my Mom and I took her shopping for a prom dress. We helped her find a dress at nearby Fairlane Mall for twenty dollars. The dress was long and black with silver butterfly clips on the straps.
I was worried in school someone would bring up the subject of cancer and ask me questions. I often thought about this possibility during class and turned red-faced and embarrassed. I wouldn’t even say the word “cancer” because the word made me so uncomfortable.
I babysat a lot the summer after ninth grade. With three teenage girls in the family, our phone number was circulated among parents with young children. My sophomore year began after a summer break that always goes by too fast. Then in bed one night in the room I shared with my sister Sarah, I stretched my legs and felt an overwhelming weakness course through my body. I didn’t say anything to anybody, but I strongly suspected my leukemia had returned. Not admitting to myself that I relapsed helped me ignore reality.
I was already scheduled for one more bone marrow aspirate (a procedure when a small amount of bone marrow is removed and tested) because of protocol before the doctors deemed me “cancer-free.” I received my last scheduled aspirate a few months after I suspected a relapse but was too afraid to voice my concern. Avoiding mentioning my fear seemed to make the disease go away.
The bone marrow aspirate was a routine procedure. The treatment room nurse in the Cancer Clinic checked my blood pressure (which normally ran low, about 90 over 60), temperature and oxygen level. I received Morphine and Versed to reduce pain about ten minutes before a needle entered my lower back. The day of my last scheduled aspirate, however, I was later told the bone marrow was thick and difficult to extract. The thickness was due to the rapid growth of cancer cells.
A doctor called my house that evening to deliver the bad news. The leukemia was back. My Mom held the phone, which I grabbed from her.
“Dr. Mody, what’s wrong?” I screamed after hearing the news. Hearing the news of my relapse spoken aloud was terrifying. My world turned upside-down. I had no idea that my illness would interfere with my life so much. I put on a brave face because conquering cancer was the only option.