By Ariana Hwang
My mother woke up from excessive movement on the other side of bed. When she turned to face him, she had discovered that he’d been scratching himself restlessly. Her instinct normally would’ve been to groan in irritation. But this time, she knew something was up with him: his skin and eyes had turned yellow.
My father had been scratching himself a lot lately in the past few days, but I, his daughter, thought at worst, he had very dry skin or an allergy to something. Concerned that morning, my mother immediately drove my father to the closest hospital. I didn’t learn of this until later when I had awakened and called her. I think my mom wanted to protect me from freaking out emotionally which in retrospect, I appreciate but also tore me inside.
That one trip to the hospital evolved into multiple visits. The bigger picture of what was happening to my father was a blank canvas—unclear and swirling with possibilities as we waited inside of a dull room for what felt like an eternity. We just wanted answers right away as doctors, nurses, and medical students in training, poured in and out offering my father numerous pieces of advice and hints to his condition. There was only one thing that was certain. His bilirubin was dangerously high, 18 mg per dL. This orange-yellow pigment is formed in the liver by the breakdown of red blood cells and excreted in bile. When bilirubin is high, either the red blood cells are breaking down at an unusual rate or the liver can’t break down waste properly and clear bilirubin from the blood. This is what caused my father’s jaundice—his temporary yellow exterior. And as weird as it might sound, I am thankful he had jaundice in the first place. Otherwise, we might have never known “The Beast,” the tumor that had nested on the tip of my dad’s pancreas.
The hospital on Long Island wasn’t giving us any concrete answers. Inconsistent information was being carried to us periodically from different people. First, one doctor suspected a tumor, then another said it wasn’t cancer, and last someone claimed it was unresectable, meaning his tumor couldn’t be removed because it was wrapped around his hepatic artery. Frustration had reached a limit for all of us, because it felt like the hospital was profiting off of our anxiety and patience. Sometimes I find myself skeptical of bigger institutions, no matter how respectable they are or appear to society. Good can’t exist everywhere and in every single point of time. After several days, I questioned morality and this hospital’s code of ethics. I also wondered: what if anxiety in waiting for answers was somehow killing patients more than the actual disease?
Angst does not solely exist in the diagnosed patient, but for every direct family member involved. For me, it was an ongoing stream of sad and bitter thoughts, a detachment from everything existing outside of cancer. After switching hospitals, to Memorial Sloan Kettering in Manhattan, I understood how serious and long-term my father’s illness was. School didn’t feel like a priority anymore and cancer was a demon on my shoulder. I was that member of a class group in my Web Analytics class who hardly contributed to projects; I was preoccupied and fatigued from visiting my father in the hospital after classes, returning home late at night each time. Give me a lesson on coping with life’s struggles over learning about big business, I almost wanted to confess inside of every classroom.
I acted selfishly for a while and channeled the anger towards my father occasionally. One day, after finishing my work as an intern at Live Nation, my dad rang me up asking if I wanted to get dinner after he got a haircut. On my end, I replied unenthusiastically and in an irritated manner, because I lacked sleep and had more work to do at home. “Can we do this on another day?” I hissed. Infuriated by my lack of compassion, my dad hung up. I instantly texted him an apology, but I knew I sounded too awful to make it up right way. Afterward, I called my mom, explaining the situation, but her disappointment and vexation manifested into words that triggered a river of tears: “I can’t believe you’re my daughter”. I didn’t want to make her words true. However, I had surrendered to my father’s ringtone long ago. Soon after, at Pret A Manger I seated myself and began eating a meatball sandwich while I sobbed uncontrollably.
While I made several mistakes with how I chose to cope with cancer and figuring out what my role was with my dad: there is no exact rulebook teaching you how to act or handle any of it. Sure there are stories of cancer almost everywhere: online, on television, in print. But everyone has his or her own approach to surviving. My brother has been physically absent for most of my father’s treatment at hospitals, for chemotherapy and presently, radiation. It’s his choice but none of it his fault though. Out of the goodness of his heart, he is volunteering at AmeriCorps, a civil society program for adults to engage in public service work. This requires a dedication of a year without any time off besides Christmas, or no stipend will be rewarded. He was already a couple of months into the program, reconstructing an abandoned ski resort into a community center, helping the poor file taxes, and fixing the roofs of devastated houses in Puerto Rico. Whenever I was full of anger, I would think of him, secretly jealous of him being far away, not having to watch my father have emotional outbreaks, lose his hair, and sleep for most of the day while chemo transformed him into a zombie. My brother confessed that he felt guilty in the beginning months but none of this was in his control and living life couldn’t stop then.
I would like to think I am doing even better to be as supportive as I can for my dad. One day, before class, I walked with my eventual boyfriend towards Union Square; he stuck around me even when I had nothing else to talk about besides dark, depressing stuff. At the same token, I was ambivalent with this budding romance, because I didn’t want him to think of this as a golden opportunity to “fix” me, console me, win my heart over, and break up with me in the worst way possible. I was no damsel in distress as vulnerable as I was. We sat on Union Square’s steps, a front row seat to all of the skateboarders, street performers, tourists, and busy New Yorkers pacing in and out from every direction. I was trying to come up with a meaningful gift or way to comfort my dad who couldn’t eat or drink anything prior to getting his stent. I vocalized my uncertainty to Alejandro and he encouragingly told me I should consider buying my father Jell-O from Whole Foods. Immediately I agreed and we searched the aisles, eventually finding a sugar-free one (it was still very tasty according to my dad). It was later, during my hospital visit, that my dad had sneakily devoured the Jell-O. It gave him a huge amount of relief; he was more eager for food than ever and giving him that filled me with joy.
Every now and then, my dad’s decisions and my own decisions feel more attached to each other. Some decisions will make me consider whether it is an ethical choice for the two of us. For instance, he was factored in when I canceled going out on New Year’s Eve with my friends because I didn’t want to regret not spending it with him some day. I am also more conscious of the water I drink, because my father decided to buy a filter from Amazon that turns water into alkaline, non-acidic, mineral water. We said goodbye to buying packs of Poland Spring water, and have now replaced it with a BPA free brand called Essentia. Water is water, I used to think. I do have my times I tend to disagree with my dad though. Through WebMD, I did find out that taking in alkaline water or going on an alkaline diet doesn’t necessarily prevent cancer, although it does support healthy weight loss and can improve heart health. I still drink from an Essentia bottle regardless; if it comforts my dad more, I rather not act dubious around him. I contradict this though with drinking and sometimes smoking but then I also look at my father who never smoked and hardly drank. He went to the gym almost every day too before his diagnosis. Cancer doesn’t care how healthy you are; it will unpredictably knock on your door I’ve learned. Almost everything can cause cancer including the sun and it’s impossible to keep track of it all. So what’s the point? I had no control over cancer.
Inevitably, hope and nihilism existed inside of my thoughts. Religion had definitely crossed my mind and it still does. It had certainly become a vital part of my dad’s life after his friend Eric had introduced him to Church and bible study every Wednesday. My father had never practiced or read the bible before. He constantly asks if I would consider attending every week, but I always have to decline. I’ve never felt comfortable praying for things to get better. Praying in my mind would signify that I was admitting to being being weak and begging for help under God’s mercy. I have no hostile feelings to anyone practicing a religion, but personally Christianity or any kind of religion did nothing for me. I already had no control over what was happening so why give this control over to some deity I have never been accustomed to in all of my life. Again, I didn’t want to open myself and seek emotional comfort inside of a larger institution. It would happen on my own terms and start with myself first.
One of my favorite musicians at this point in time is Japanese Breakfast. I find more solace in music in moments of despair or confusion than anything else. As I was listening to songs off of their latest album, “Soft Sounds From Another Planet”, I learned some facts about the lead singer, Michelle Zauner. Her mother had passed away from cancer, and to confront grief, she had explored her healing by creating music. One song, “Body is a Blade”, stuck with me more especially after watching the music video, one that she directed and edited herself. She released it with a note, stating what the song had meant, “Body is a Blade is a song about letting your body take over when mentally you can longer be present…It’s a reminder that the world did not target you personally, that people survive tragedies everyday.” My father is still alive, but the realization that his life is at higher risk should not change me for the worst. I can’t be bitter about tragedies happening every day. Living with my father’s cancer is not part of God’s plan. It has nothing to do with obtaining bad karma either. Cancer simply happened, and I can only keep learning from its existence.