The Pearls of Autonomy: An AYA Survivor's Perspective
by Shweta Gohil
It was nearing bedtime. I remember walking into my mother's room to bid her a goodnight and seeing a sight I had grown accustomed to, but nevertheless had a smidgen of hatred towards. Papers all over the bed, flashcards on top of the papers, books interwoven into that chaotic pile, and of course in the corner was my mother hunched over her desk staring blankly at a computer screen. The air in that room carried a stench of stress and nervous anxiety. I felt like an intruder, but little did I know that room would become my holding cell, my antitheses of autonomy.
My mother was not some crazed mad scientist nor was she suffering from manic- depressive disorder, although I would imagine that Van Gogh would find it an ideal atmosphere to slice off his other ear. My mother was studying for the dreaded USMLE (United States Medical Licensing Exam) exams, so it was an acceptable and expected ambiance. I walked into her abode, said goodnight, and was halfway out of the door when she had stopped me. She beckoned me closer and turned me around so that my backside was facing her. Her voice had filled with the syrup of concern, brimming, bubbling, and about to overflow the pot.
"Do you have pain in your left calf?" she inquired.
I remember thinking hypochondriac was the appropriate diagnosis. "No." My calf had not been paining me.
"It looks enlarged compared to the right one."
"No."
It had not been paining me aside from the regular aches, the normal consequences of varsity tennis season. The look on her face conveyed that she desperately wanted to agree with my nonchalance. She wanted to defeat whatever doubt was working its black magic, manipulating her thoughts. I retired to my room thinking my mother needed to take a break from all the studying. She needed to live in the real world as opposed to the world of simulation cases and diseases that couldn't be pronounced. What were the chances that a healthy teen had a life threatening illness? I was in my invincible years.
That particular moment has been ingrained in my brain, branded as if it demands some sort of ownership over me, but at that point I disregarded the conversation with little inkling of what was to come.
Then my calf started to hurt. The pain wasn't excruciating at first just a mere nagging of an intruder preparing to attack. It wasn't an all-day affair. In fact, it was a strange entity. The pain would stealthily creep up as the sun was setting and linger snatching away the little sleep privilege I had as a junior in high school. These nights, quite a nuisance, were followed by sporadic sharp reminders of pain - sometimes during home room, sometimes during AP Literature, and sometimes as I was driving home from school. The culprit's sole consistency was its' role as a faithful nighttime companion. Sleep had become a rarity. When I did manage a wink or two of sleep sweat had proven itself to be the loyal subject of the pain. Pain, night sweats, lack of sleep, and- a twinge of fear.
Fear. Had I been asked to diagnose myself I would have proudly claimed a torn ligament or a strained calf muscle. Injuries were normal for an active teenager, and I fit the categorization. No strenuous activity for three weeks, an excuse to leave class early, and someone to carry my books. I prayed that would be the verdict. What else could possibly disrupt my golden years, my opportunity to finally establish an individual identity?
Fear. But the pain was not comparable to anything I had experienced before. This pain was an invading pain. This was the emperor of all intruders, the emperor of all maladies. All I had wanted to do was complete junior year with all of the chaos the education system places on a student. I had wanted just wanted a normal junior prom, SAT prep, and dating life.
But, to no avail. The pain had inch by inch reached an increment on the ruler that I had was not comfortable with. The uneasiness had been in the depths on my soul, not just the physical manifestation of pain, but a spiritual and mystical one. I had known something wasn't right. During my walk to the bus, I had decided to mention my angst to Laura, my best friend. Little did I know that she had observed my slight tendency to favor my left leg. She had urged, pushed, and, begged me to pay a friendly neighborly visit to my orthopedist.
Laura was the youngest of three siblings. She had a brother named Dan, her super hero, who had walked the same halls just a few years prior. He sat in many of the same desks as Laura and may have shared the same church pew during school mass. Dan was diagnosed with Ewing's Sarcoma during his junior year, the same year I was in then. He started and almost completed a rigorous treatment regimen with the support of family, and the few friends that withstood the test of cancer. The last cycle of chemotherapy celebrations were in order, when the unfathomable occurred. Dan complained of excruciating back pain that rendered him bedridden. He was supposed to be returning to life, to normalcy, to autonomy.
Dan repeatedly voiced his discomfort to his pediatric oncology care team. But Dan was so close to his last cycle of chemotherapy that optimism was the chosen mindset to adopt. His previous scans were to the team's satisfaction, so the team ruled in favor of bedsores. Bed sores that commonly occur in elderly patients or the immobile, of which he was neither, at least not before the back pain started.
I'm not out to catch the perpetrators because with cancer, the only perpetrator is just that, cancer. Nevertheless, in simple terms pediatric oncology is an art not an exact science. Certainty is seldom the case. After the pain escalated to the level or torture the team ordered another follow-up scan. The scan proved that Dan's enemy had grown, multiplied, metastasized. Dan, a once vibrant 17 year old, was advised to go home and live out his last days with his family.
I can't help but wonder if he was asked how he wanted to live out his remaining time or for that matter, what were his goals at the time of diagnosis. In a society that is both fascinated and fearful of questions regarding death, namely, "What do you want to do?" "What is important to you? and "How would you like to live out your last days?, these questions are crucial to an adolescent's longing for normalcy. How does a 17 year old accept reality, give up hope, and say goodbye to his family and friends? I'm not sure end-of-life discussions are ready to face the adolescent population, but often the most unsettling conversations are equally beneficial in patient care, equal to drugs pulsing through the patient's veins.
A few days before my appointment, I noticed physiological changes. My calf had swallowed a tennis ball. A football had then come to take over the baseball's shift. My calf was no longer mine. I was losing control of my body. On the day of my appointment, my mother and I met with Dr. N. Dr. N had catered to all of my injuries. He was gentle, pragmatic, and stern rolled up with extensive knowledge on just about every subject- a superhero in a doctor's role. There was never a time I felt nervous in his care, and I believed I would leave his office with a brace and the promise of full if not speedy recovery.
I recall him caressing my bulging calf. His face strangely contorted refusing the urge to blurt out his first impressions. He had proceeded to raise up my left leg, extend it from the knee, and gingerly stroke the mass in reverence. He had known there was no need to state the obvious, my body had been invaded. Dr. N had been a bit distant, a bit thrown off, and not just a bit but - very much concerned. He placed the x-ray image for my mother and me to see. I had felt the invader growing within me but now we were face to face. I stared angrily at an entity I had no control over. He stated, straining to keep his voice under control, that I had a mass, but remained nonspecific. Well I sure as hell didn't think that imposter was a Dunkin Donuts munchkin that had lost its way to my stomach. Strange that such an ugly mass has succeeded in mesmerizing the medical community.
I cannot recall much about of the next few minutes. Dr. N mentioned I needed a biopsy. He stepped out to speak with one of his nurses. He stepped back in to make certain I could still walk as if he expected immediate deterioration. He stepped out to speak with someone who had called regarding my case, perhaps the surgeon performing my biopsy. He stepped back into alert me, news flash, that the mass would continue to grow and I would lose my ability to walk. But when, how, why? He stepped back in and out and in and out ... and in. My world was spinning and I was simply a bystander, I wanted a say, but he was the expert on a disease that continues to elude us.
I recall my mother calling my father. I told him the doctor found a mass. His response had been quite comical both then and now, but was expected of a loving father coping with the situation. He confidently stated with his nonexistent medical knowledge that it was probably a cyst that needed to be drained. Once drained that would be the end of my issues. I had repeated the need for a biopsy. He personified denial and repeated his cyst theory.
"Dr. N, I have a chemistry exam today."
His eyes peered into my soul while his face expressed an incredulous disbelief. The juxtaposition between his appearance and his reply was quite telling. He hadn't belittled my chemistry exam in the face of this mass. He hadn't declared me in shock. He hadn't demanded I be reasonable. He had merely asked if I felt up for going to the exam while he made preparations for the biopsy. I stubbornly held on to my life a bit longer, and thankfully he obliged.
In my head, the next logical step had been to return to school. It was more of a home than the one to where my mail was sent. There, I had been primed, puffed, buffed, and polished for the next phase of my life. A 97% on a test was 3 points short of a 100%, 3 points short of perfection. I had been training for a place within an Ivy League, to graduate Cum Laude, to be a part of that world of prestige, valor, and tradition.
As we pulled up to the front of the building, the school slogan mocked me "Where Tradition Meets Tomorrow." What good is tradition if we don't know what tomorrow will bring, or if there will be a tomorrow. I walked through the doors but didn't have the slightest intention to take the chemistry exam. Instead, I walked around aimlessly. Where was I headed? I was searching for answers in a realm of endless questions.
The intruder within my calf continued to silently plan my demise, to 'mass breed' its troops, and to divide and conquer. I was angry that I heeded to Laura's concerns, but not only because of the pain. I didn't want my life to change. I had a set path, and with high school being so cruel, I wasn't ready to accept a detour in my route. I barely knew myself, and I was afraid of what I would morph into post diagnosis. My life had changed in the one split second, but the intruder had been planning for attack for quite some time, perhaps years.
The biopsy followed. I was taken as cargo in the back of the van, in a pretzel figurine carefully propped up by throw pillows. Any movement sent excruciating pain up and down my left calf. "Are we there yet?" had become my personal mantra. The van, our once happy family van, groveled unwilling. I was wheeled into the hospital. I could no longer walk, when all I wanted to do was run away from the unknown.
It was right around Christmas time, but the hospital seemed devoid of Christmas cheer, or maybe I was. The nurse tied the rubber band around my right arm just above my elbow. That band, oh that band. The band reminds me of Ernest Hemingway's A Farewell to Arms. It reminds me of a truncating tactic used on a wounded soldier used as a soldier bleeds out of his gunshot wound in his femoral artery. An act of a last ditch attempt to save my past life, the nurse slapped the vein a few times commanding it to behave. Didn't she realize this body's commander in chief had been overthrown, that nothing in my body would heed. I could see my surgeon out of the corner of my eye. He had witnessed the blood draw episode between the nurse and my vein with a look of sympathy and fascination.
I woke up groggy and still in need of a couple of full nights of sleep. Buck up soldier. Why was the air thick with nervous energy? The actual biopsy procedure was nothing to fret over, but its implications were. I was sent home, once again as cargo, but at least I had a prescription of morphine. I, a 16-year-old girl, had been given a prescription of narcotics to use liberally. The pro I would be relatively pain free. The con, well the invader would determine my intake of morphine and inadvertently my CNS. What was next? Every ounce of control was slowly being pried away.
Morphine came with a price. The hours spent on morphine could never be replaced, an exchange of painlessness for consciousness, for time that I could have owned. However, my body felt cradled and cocooned. I felt sheltered from all of the evils plotting and multiplying within me. During that period of limbo an apocalypse could occur and I wouldn't be the slightest bit concerned. I felt myself desperately clinging to that sheltered feeling just as I would awaken for the next dose, just as I would recall that I was thrown into unchartered waters.
I slept most of the initial days away, but that never stopped my mother from hovering. I wasn't permitted to hobble over on my crutches to use the bathroom without supervision. Her imagination had run wild without the assistance of any form of narcotics. She believed I would topple over just like a spinning top that has lost its circular momentum. I was expected to call out when I needed to use the bathroom. She would drop everything, come upstairs to my rescue, and assist me to the door, wait outside, and assist me the five steps back to the bed. I thought I passed the milestone of unassisted potty training at the age of 2? I was regressing, but worse I didn't know when that would be reversed or if it would be.
Not only had this trip become a task all on its own. I was now confined to the bedroom, her bedroom. I was 16 years old and slept in my mother's bedroom, next to my mother who insisted on keeping watch while I slept. My bedroom was less than 10 steps away from hers. I had not lost my voice due to the invader and she could have easily attached a cowbell. Regardless, my life had ceased to have its own identity, its own path, and most certainly its own freedom. I had become a case study - with positive outcomes, eradication of the invader, as a requirement. The more pills I swallowed the less aware I was. I could not distinguish sleep from reality, but let's face it I wasn't gung-ho about my reality either.
Two days later we received reports of the biopsy--Ewing's Sarcoma. A pediatric oncologist told my mother, but I didn't take the call. I was 16, a minor, and unaware of decisions being made. My dear mother and father told me the diagnosis with as much sensitivity as they could muster, but the tone of the conversation implied the only concern for the duration of treatment was winning my personal war with cancer. My thoughts raced back to Dan and his relationship with cancer, a helpless bystander.
And once again, I was precious cargo. I caught a few glimpses of the flurries outside the car window as morphine's next dose worked its magic. And thus began my battle with Ewing's Sarcoma as well as the battle to preserve my identity.
As a long-term AYA survivor, I urge pediatric oncology community to serve this population delicately. Morsels of control and autonomy can be rightfully returned to the fighter from early stages of diagnosis. Have the tough conversations early on, understand what is important to the teen, conduct conversations focusing on the person rather than just the disease, and allow them to attend that seemingly inconsequential chemistry test. Urge the parents, family, and friends to focus on the wishes and desires of the AYA rather than just the course of the disease. This is not an ancillary task but one that should be interwoven into the art of oncology. Although we have progressed in the war on cancer post 1971, the disease remains largely untouched from an AYA psychosocial perspective.
Shweta is a long-term survivor and childhood cancer advocate, currently pursuing a MPH in Health Systems and Policy with the hope of improving the health and wellness of people around her.