Peter Piper picked a peck of pickled peppers

A peck of pickled peppers Peter Piper picked…

That’s what I used to recite to myself, either in my head or under my breath, when things got tense. Especially during that God-forsaken year, and especially in that big, white room tucked away on level five of Children’s Hospital Los Angeles. The room that sat empty save for my oncologist, my mother, and myself. I kept letting the puh noises click and slide over my mouth, over and over. For some reason the tongue-twister eased the anxiety that had been developing, sitting there in that room. It let me concentrate on something besides the fact that I was one of the numerous cancer kids here, although as a twelve-year-old, I think I was the oldest one. Maybe I said the rhyme because I had to focus on the consonance of the syllables rather than on whatever uncomfortable situation that was at hand. Maybe I just thought it was funny. I kept muttering it to myself, trying to evade the reality that was my disease, the reality that I was sitting in this room. But even in that big and seemingly empty space, my childish limerick could not cover up the fact that I had blood cancer. And we were here because something had to be done about it.

***

Dr. Zomorodian didn’t beat around the bush; I had my options placed before me. Two, in fact. It was not a glorious number but it would have to do regarding the circumstances. And I had learned very quickly that the numbers given to me were either going to be my highest hope or greatest obstacle. So far, the numbers they gave me regarding my physical status were not too appalling. I had a seventy-five to eighty percent chance to live, they said. Not bad odds, honestly. But what about that other twenty to twenty-five percent? It seems like a relatively small amount; nothing to be too worried about, right? But then again, I had a point two percent chance of developing this cancer in the first place. Maybe I’m prone to the unfortunate side of the what-are-the-odds game.

I remember this meeting very well. My oncologist sat before my mother and me. She had gone over my diagnoses—Hodgkin’s Lymphoma—and laid out the facts. There were two tumors my body played host to. One made its home on the lower part of my neck and the other in between my heart and my aorta, about the size of an orange. They were feeding off of my lymph nodes, taking in everything they could. This meeting was to discuss the course of action in the attempt to save my life. That’s kind of a lot to take in as a mere twelve-year-old. When they first told me my body was cancerous, it didn’t sink in. All I could think of was, Me? I have cancer? No, no, you must be mistaken. I don’t get cancer, people get cancer, but I don’t get cancer. It’s a selfish thought, really. But I won’t deny that that’s what I thought. It’s never really a big deal to someone until it becomes a reality. That’s the first thing Dr. Zomorodian told me in that meeting. She looked me in the eyes and said, “Sweetheart, what’s outside these hospital walls is not reality. It’s what is inside the walls in which reality was contained.”

The two options she presented to me were critical—probably the most important decision within the whole business of cancer. And it was all up to me, a child. Mama couldn’t save me this time. Even as I turned to look up at her, silently wishing she would take this burden of choosing from me, I knew that ultimately I would have to be the one to pick my poison. Dr. Zomorodian said it was because it was my body that would be undergoing treatment. Even though I was a minor, it was nobody’s decision except my own. What is this sick power? I thought. I wondered why it had to be this way, since Mama was always the one to make these big decisions. But I didn’t dare ask it out loud; not because I was afraid of what the answer might be, but because I could see in my mother’s eyes how afraid she was. I didn’t want to seem too vulnerable to her. Someone had to be the strong one out of the two of us.

Option one was a chemotherapy mixed especially for children. It consisted of four rounds, four different types of liquid chemo that would take approximately four to six hours for my body to take in through my PICC line. I imagined the faceless pharmacists in their sterile, white lab coats concocting this medicine like a bartender makes a drink. A bit of Adriamycin, a swig of Bleomycin, and a blend of Vinblastine and Dacarbazine all shaken up nice in a little chrome martini mixer. Served up cold just for me. It was a harsher brew that went by the name of ABVD. It didn’t come alone either. No, this drink came with side effects like extreme nausea and vomiting, weight loss, energy loss, anemia, headaches, fatigue, and of course the oh-so-iconic fashion statement of hair loss. But those symptoms were mere rainbows and sunshine compared to the Big Side Effect: breast cancer.

Option two was the adult mix. It consisted of three rounds of chemo and came with the same sides as the first. I don’t remember much of what it was made up of; some other big, ugly words I can’t pronounce. All I remember was that instead of four to six hours of lying limp in a hospital bed every two weeks it would only be three to four hours. But just like option one, option two came with its own Big Side Effect. The ingredients used in this chemotherapy called for long-term repercussions. What it pretty much came down to is if I chose this type of medicine to help kill off my cancer, I’d also be choosing some heart problems and essentially agree to having a heart attack when I’m fifty. So it was either suffer more now or suffer more later. Either way it was poison. Either way I had to choose.

Once the two options were laid out for me, the only thing that really stood out to me were two words: breast cancer. No way did I want to be back in this room, having another discussion about what type of chemo I’d have to get because I developed breast cancer from my previous treatment for another cancer. Uh-uh. Nope. I’ll take the heart attack at fifty, thanks.

I’ve struggled with heart problems ever since my last round of chemo. But it’s way better than the alternative, I guess.

***

The first year was just a numb cycle of back and forth. Go to the hospital, receive treatment, be sick, do it again. I did this consistently before undergoing radiation therapy. And then it was just wake up, get radiated, be bald, do it again. I had to be pulled out of the seventh grade. My teachers were nice about it though and let me go on to eighth grade the next year. But I remember feeling so lost in class when I was able to go back after treatment. For example, one day in math I couldn’t figure out how to do a percentage problem while the rest of the class managed with ease. I tried to figure it out but couldn’t, and was so frustrated with my lack of understanding the problem. Later I realized that because I had basically skipped seventh-grade math I missed out on how to do problems that were considered “easy” in eighth-grade math. I struggled in math throughout high school as well, having to take summer school to catch up with the rest of my class. All because of two stupid cells that decided to gorge themselves, setting me back and making me feel dumb. All because I couldn’t do percentage problems.

***

Normal people don’t get cancer. They try to understand, but they just can’t. They have campaigns, they raise money, they raise awareness. I can understand the productivity and possible success of first two, but the last one pisses me off. Raise awareness? Are you kidding me? People have been well aware of cancer for centuries. The Instagram posts, the Facebook hashtags, the matching pink, gold, green, or purple outfits, the “post a photo of your favorite childhood cartoon character to raise awareness for children’s cancer!” phase (among countless other equally ridiculous phases) …Do they really think they are doing anything? Are they actually helping save someone’s life? No. Not one itsy bitsy little bit. The cancer kids don’t want awareness. They want to breathe again. They want to eat again. They want warmth, hair, and strength. They want their health back. But most of all, they want back the feeling of certainty that they’ll see another day. And the truly sick part is, the people who don’t get it, who try to “raise awareness” by doing these stupid, useless things feel like they have contributed to the epidemic. They feel accomplished, they feel good about themselves because they used their voice or appearance to “support cancer awareness.” Allow me to shed some truth on that: while they were moseying along through the year and being “supportive” by posting pictures of them wearing the color pink in October or green in February, one thousand nine hundred and sixty kids died. So congratulations, you supported cancer. Go you.

***

Sometimes it makes me angry. But I have to remember, it isn’t their fault; they just don’t understand. It’s hard to grasp something that isn’t a part of our experience. I first came to realize this a couple of months post treatment. I was finally allowed to venture outside again when previously it had been a dangerous notion. Me? Go outside? But there’s all kinds of viruses that will kill me and the sun will burn my translucent yellow skin! At last, my immune system was getting stronger and I was finally able to win against the teeny tiny germs that healthy people don’t even need to think about. I stepped into church one Sunday morning for the first time since the day I fainted in the pew over a year before. I didn’t know it back then, but since my cancer cells were eating up all the sugar in my body I blacked out right there in front of everyone while we were singing, “Come thou fount of every blessing.” When I came to, I blamed it on not eating breakfast that morning.

A lot of people came up to me as I tried to take a seat. They congratulated me, shook my hand, smiled and said, “It’s a miracle. You’re a miracle!” Their plastic smiles and high-pitched voices were cringeworthy and awkward. I had never spoken to these people before and now they wanted to shake my hand and call me a marvel. I felt it then and I still believe it now: cancer is no miracle. And surviving it is hardly a triumph. People think that once the tumor is dead, so is the pain. Yes, the physical toll eventually goes away. But even though the cancer dies, it’s ghost still lingers. It haunts the mind and whispers softly in your ear, “I’ve still got you. You’re still mine.”

One gentleman came up to me and started asking about my perspective on the whole thing. I was stunned but slightly relieved that at least someone seemed interested in my own feelings about it. After I had spoken a few words, he nodded as if he understood and said, “I know exactly how you feel. My dog died last week and I still can’t believe it happened…” Pathetic.

I wondered if this guy, since he was supposedly a long time member of the church, had said something similar to Jesse. Jesse Mastan was a girl a couple years older than myself. She and I had gone to elementary school together and she also attended the same church. When she was fifteen she was diagnosed with bone cancer. After a year or two, her medications created some complications and her body developed skin cancer. And anyone who knows anything about cancer knows that if you get skin cancer, you might as well start digging your grave.

She remained faithful through and through, though. She was strong, and I looked up to her. While I was in the hospital awaiting my diagnosis, she sent me a message over Facebook giving me tips on how to shave my head and what not to eat or drink during treatment. I remember the last thing we ever did together as kids at school. Ironically, we were braiding each other’s hair at recess. She died in the middle of March, at 6:23 p.m. Her funeral was on my thirteenth birthday. I wanted to go, but I was receiving chemo that day.

***

There were several of what I consider to be moronic incidents like what happened with that man at church. But there were also some pretty good laughs. One night during my pre-treatment stay at the hospital, I remember that my RN smelled particularly ripe. Every two hours when she would walk into my room to check my vital signs, I’d hold my breath hoping she wouldn’t notice my heart monitor fluctuating. She didn’t seem to observe this much until about four in the morning when she came to check me again. My heart rate monitor was reading very low with very few beeps per minute. The little mountains on the screen that portrayed my heart beat were mere gopher hills at this point. But it wasn’t because I was holding my breath.

At some point in the night, the clip on my index finger that felt my pulse and transferred it to the screen had slipped off a bit. So it was not picking up my pulse, hence the gopher hills. The smelly nurse noticed my seemingly low heart rate and checked the monitor. Then she looked back at me. Back at the monitor. Back at me. Trying to figure out what was happening before her.

Now, I had been lying still this whole time watching her. As her eyes kept flitting back and forth from the monitor to my frozen face, I suddenly realized, oh, she thinks I’m dead. So I let my eyes go blank and my head slowly fall limp on the pillow. My nurse placed her hand over her mouth and gasped.

Without skipping a beat, I said, “Hello.”

I never saw that nurse again after that, which was just fine with me and my nose.

So there was good and there was bad. Even when most of the time the bad would outweigh the good, I have never wanted to trade my cancer for anything in the world. Six and a half years have gone by and I still believe it to be one of the best events in my life—and it took me a long time to embrace this. In the middle of it all, I thought that going through chemotherapy and radiation was the worst part. I hated the smells of the medicines, the taste of my nausea pills (which ironically just made me vomit anyway), the taste of saline through my PICC line, my purple knit hat. I hated being so tired and so weak. Every time my arm would brush against a wall or chair a new blue and yellow bruise would form on my thin skin. I hated how profound my collarbones were below my neck.

The loneliness was inevitable. Since I was so susceptible to germs I was not allowed many visitors. So I’d watch movies instead. I don’t know how many times I watched The Bird Cage, but I can recite every line. Robin Williams and Nathan Lane were the only ones who could make me laugh.

But I was wrong. The treatment process was not the worst part. The worst part came after chemo and radiation. It was that lingering voice again. The one that kept whispering, “I’ve still got you. You’re still mine.” Only when it was a few years later, when those voices began to finally ebb, did the healing process actually take place.

***

If you were to look at me now you’d never know that I had cancer as a kid. And that’s how it is supposed to be. Just like most transformative experiences, the only evidence to show for it is the kind of person that comes out of it. I had lost so much because of my experience: my childhood, my confidence, my education, my friends, even my hair. Unfortunately, it wasn’t until much later that I realized how much I had gained: renewed faith in the greatest physician that is our heavenly Father, strength, pain tolerance, new confidence, a passion for leading others. Like I said before, I would not trade it for the world. Having cancer does not define who I am, but it has greatly shaped who I have become. It has molded my perspectives on how to thrive in life, how to receive the pain of others, and how resilient human beings actually are. I also realized that getting cancer was not my fault. It wasn’t God’s fault either. He did not force cancer upon me, but I believe He allowed it to happen for my own good. I can’t even picture the kind of woman I would be today if I had not undergone the journey that so many are blessed (yes, blessed) with. In the moment, it is scary, deadly, unknown, and depressing. But there is so much light at the end. A light so beautiful you realize the darkness was necessary to appreciate the light. I was fortunate enough to see the this light, albeit, three years after treatment. But those three years of dark depression were necessary. That dreadful year of 2010 was imperative. Without the struggle, there would be no salvation.

Six and a half years later, as an adult, difficult situations are to be expected. There’s school to think about, bills to pay off, jobs to hunt down. But hindsight is always twenty-twenty; any forthcoming obstacle can be faced with the remembrance of my greatest struggle. And of course, the occasional mumbling to myself, Peter Piper picked a peck of pickled peppers, a peck of pickled peppers Peter Piper picked.