Sitting in The Terminal

My hands wrapped around the warm mug, my tea now spoiled by the salty tears dripping into the milky mixture. Three unfamiliar nurses congregated around me. One held my limp left hand that wouldn’t clasp hers back, another reached her arm around my shoulder and would periodically wrap her other arm across my chest in unreciprocated hug, and the third nurse, with her hand on my right leg, spoke in her thick Tralee accent reassuring me that I could cry to her all evening if it would help.

“I’m just terrified.” With those words emptying my mouth, my tears began to rain relentlessly, and my breathing became more laboured. There was a heavy weight inside my lung, and I strained to lift it each time I tried to suck in a deep breath of cool air. Each strenuous and tearful gasp for oxygen felt as though my ribs were splintering, the shards stabbing into my left lung after every painful inhale. 

As the commotion persisted, the palliative care doctor – who I had become quite fond of during my days spent in the Tralee University Hospital – had abandoned the plush arm chair beside me and was hovering anxiously at the end of my bed. She shifted from one foot to the other, and her nervous fingers fiddled with the chunky necklace perched on her chest. Seeing my devastation, I suspected she regretted letting me metaphorically have a peek at my patient file by releasing the information she knew would be explained in further detail to me the following day. Initially she had fluttered around the topic of my mortality that my questions had drawn her closer to, but eventually she understood that I needed the transparency. She spoke cautiously, as she explained the possibility that the oncologist I would speak with tomorrow may say there was nothing more that they could do for me.

I woke the following morning with swollen eyes and layered in an abundance of fears. Fears I hadn’t had before, but they now took precedence and made all others irrelevant. The phobia that laid most heavily on me was seeing my health and my body decline in the months approaching my death, leaving only a cracked shell of the vibrant and lively person I once had been. I was scared to watch myself die. 

Shortly after waking, I was told to put on a sweater before being led into another room where the oncologist could show me my scans. He had pictures for his presentation. I sat at a round table and adjusted my chair to face the doctor who was perched at a computer in the far corner of the room. My mother and step-father cowered in the opposite corner, their faces drained from any colour while they waited, as anxious as I was, for what would be said. I stared beyond the face of my oncologist to the computer screen behind him. It displayed black and grey images, and although I could infer that they were my lungs, I couldn’t comprehend what the grey marks and smudges indicated.

“Shall we all sit down?” The Palliative Care Doctor was here for the meeting as well, and I wondered if she had confessed her transgression from the previous night to the oncologist. My parents took their seat, all of us already aware of the news that the large elephant in the room carried. 

  We were told that no biopsy was required. They knew that it was Ewing Sarcoma terrorizing my insides for the fourth time. Within eight weeks the cancer had metastasized, extending its deadly tendrils far enough to encase the outer layer of my lung called the pleura. With the mutated cells spreading so aggressively, the doctor told me that my cancer was now considered to be stage four. With somber tones, they described that surgery was not a viable option due to the location of the cancer, and since it was wrapping around my lung rather than in an isolated location, radiation would not be the right course of action either. They reiterated what my Canadian oncologist had written in the medical records sent the Irish team, stating that they did not see positive results from chemotherapy, indicating that my body has learnt to resist its effects after having endured the poison in 2014 when I was initially diagnose with Ewing Sarcoma. I heard their words without really listening to them, until they mentioned that there could be an alternative type of chemo they could try, but at this stage it would only prolong my life. Those last words I heard so clearly as if they were spoken directly into my ear: prolong my life. Did that imply that i had an expiry date that they could attempt to extend with some chemical concoction?

“Can you explain more wha stage four means” I knew I had to ask the hard questions to get to the answers that I was searching for, but didn’t want to hear. With slow and sad sentences, they told me that my cancer was terminal. I asked if they could estimate how long I had, because I would want to know if my time was short.

“What does short mean to you?” 

“Months”

The two doctors silently looked at each other, a gesture that terrified me. Although the exchanged look was only for only a few seconds, it felt like minutes to me. Everything appeared to move more slowly in those seconds before any response left their mouths. They were awkward in telling me, as though it was hard to formulate their sentences, but eventually I understood that with how aggressive my cancer was spreading, that they estimate it would take my life in a matter of months. 

Two months prior, I had confidently gotten onto a plane bound for the Emerald Isle after my Canadian oncologist had happily shared with me that the tumour found on my ribs near my vertebrae had shrunk significantly from radiotherapy. With excitement coating her voice, she told me to “go enjoy yourself in Ireland without any stress, and make sure to have a couple pints for me.” I took her advice. I even spent some time in Spain having a mojito in her name, clinking glasses together with my friend and toasting to my health. However, my cancer was more stubborn than me, a trait I was notorious for. It had clung to my body, determined to consume me regardless of the poisonous cocktail we doused it with, or the scalpels used to exorcise it like a demon from my body. Not even the radioactive shots targeted at its core could stop it from its purpose. Those treatments didn’t seem to reduce the tumour or mitigate its growth, instead it angered the mass, causing it to become more aggressive. It had put a bounty on my head, and it wanted me brought in dead.

My Wonky Arm

The bathroom mirror in my room at Mount Sinai Hospital had a film of fogginess covering its surface, similar to the drug induced fog that coated my brain. I first looked at my fuzzy head and the dark rings hanging below my eyes – then my gaze fell to my surgery site. Thick staples pulled the skin of my inner arm together, and ran from my shoulder to the top of my elbow. My arm felt heavy in the cheap blue sling, but the upper half of my limb was skinnier than the arm I had offered up to the surgeons to work on. I was waking up with an extremity that wasn’t my own. 

My thoughts moved rapidly and unfinished, but they settled on the memory of my childhood teddy bear Freddy. My right limb looked like his: thin at the top and swollen at the bottom, as if all my stuffing had been pushed towards my hand after years of being dragged around in a child’s tight grip.

During the hour and a half that I waited before the surgery to remove my tumor my name was called multiple times before I was finally laid on the cold metallic bed. Each time I was called I left my family in the waiting room, believing that I wouldn’t see them again until I woke up. It was as if I was blindly pushing on the glass of a revolving door, stumbling out each time to a new stranger who bombarded me with paperwork and questions just to shove me back in to continue pushing. 

I was called in to robe, confirm my personal information, meet the surgeons, and speak with the anesthesiologist to confirm my personal information again. I provided so much information to each individual I met, but they neglected to be as transparent with me. I wasn’t effectively told what to expect from the surgery or that I would permanently lose the functioning of my right shoulder. I sat quietly as my limb was marked with a pen and my surgeon briefly described that I would be in a sling for six weeks after the procedure. It was quickly mentioned that I could use my wrist and elbow, but not my shoulder. No one explained that I would still have these limitations even when I could shed my sling. I didn’t have time to understand that I would wake up with a disability before they pushed the IV into my vein and told me to countdown from 10.

My tumor was removed successfully – and so was the functioning of my right shoulder. The day after the procedure, my surgeon recited the extensive list of muscles they had removed along with the tumor as I struggled to focus through a wall of morphine, and I was told that my new limitations would be permanent. For the first few months after my initial surgery, I had trouble with the concept that my right arm was still a valuable part of my body. I was mourning the loss of a limb that I still had. 

It was difficult for me to look at my long scar because I was disgusted (rather than fascinated) by the surgery, and my posture unconsciously began to cave inwards to protect my shoulder. I chose to use negative language when describing my arm, stating that the limb “forgets to work sometimes” or pretending to get angry about it, as though it was my disobedient child. It was embarrassing when I fumbled feeding myself with my left hand, and when I went out in public wearing a tank top I became paranoid that everyone was staring at my “deformity.” I lost arguments with my mind each time it told me that my arm was something I should be ashamed of.  

 “I’m sorry, my arm is a bit wonky.” I had said this phrase without any consideration while introducing myself at my first job interview after my initial experience with cancer. Using my left arm, I raised my right to meet an extended handshake and apologized for my disability. My intention was to quickly dismiss my abnormal handshake and move on to another topic – but instead I had discovered the way I felt comfortable describing my arm. The phrase continued to slip out easily in replacement of the blunt explanation that I had a tumor removed from my shoulder, but the label was initially just another way to detach my arm from my identity. I was still apologizing for my disability by calling it wonky whenever someone’s right arm was lifted to meet my own, or when I dodged an embrace from someone who couldn’t know that his or her hug would hurt me.  I was still apologizing for something I couldn’t control, and a quality that I should have been proud of.

Although I was beginning to allow my wonky arm to become a part of my story, my opinion regarding my disability was still immature. During this period of transition, the word disability made me feel uncomfortable, and I allowed myself to internalize the perceptions of others when they told me that I didn’t “look disabled.” It felt like the individual who told me that I was disrespectful for using my legal accessible parking pass was correct, and I smothered the voice that was screaming “this isn’t right” each time a stranger defined my disability for me when I did things differently to adapt in my workplace, in a grocery store, at a bar, while I opened a door with full hands, or as I walked my dog down the street. 

My family challenged my perspective during this time and pushed me to question why I felt the need to call my arm wonky or apologize for my disability.  It motivated me to enroll in a Diversity and Disability course at my university, which became the catalyst for the evolution of my own self-perception as well as my previous understanding of persons with disabilities. I began to educate myself by connecting with others who had similar experiences, listening to their stories and reading their recommendations. I wanted to let the people with disabilities teach me about disability, and it helped me perceive my wonky arm as something that could be positive. I needed to endure the anxiety of going out in public and started to use my wonky arm as a teaching tool for others who are ignorant to the diverse range of disabilities, or are blind to the understanding that cancer leaves you living a completely different life than the one you had before. By questioning my understanding of ableism, I was able to remind others of their own ablest privilege. I had finally chosen to love my wonky arm.

When I began sharing my story more intimately through my blog I had no hesitation when calling it Wonky Arm, but once the domain name was created I considered what the title phrase meant to me. I had labeled my limb as such for over a year, but I had never put the definition into words. My slogan came out as easily as the first time I had used the phrase: “cancer made me disabled but I am very able.”  Without much thought, I had written down what my arm meant to me. Wonky Arm became my way of taking back some idea of control over my situation –  I had created my own definition of my disability. It meant that I was resilient. It defined my difference as something to be valued. It became a positive label that I shared with others within the cancer and disabled communities to demonstrate that we can love our wonkiness.

This Piece was also shared on My Wonky Arm — ladySTUDIOS (lady-studios.com)

My Long Story Short

“Well, if I’m dying I wouldn’t  want to know” -Those exact words have come out of my mouth more than once, but a visit to the London Regional Cancer Clinic changed that ignorant perspective. I was determined to know what was wrong with me. 

Many of the people in my immediate life remember the months before this “cancer-free” period, the months filled with my complaints of pain. Some of them drove the 45 minutes west down the highway to my family doctor’s office with me, and some provided a tired ear to my unremitting worries. I had exhausted the subject.

Eventually after a year of that routine and multiple visits to my family doctor, the cancerous mass was found in my right shoulder. By the time of my diagnosis, the tumour had evolved and had pushed passed the boundaries of my bone, hugging my muscles and nerves in a cancerous blanket. Prior to my diagnosis, I had always described to my doctor that the pain I felt was an ache in my bone and throughout the near-year of complaining, the pain progressed to affect my nerves and hindered my strength and mobility. My doctor sent me to an ultrasound, then to an EMG test, and concluded that I belonged in the hands of a physiotherapist. After a year of trying to find a source for this relentless pain, I ended up in the emergency room whining that my arm felt like it was hanging on by a thin thread.

“Minimum 4-hour wait” The sign hung in the window at the emergency reception desk and before I had finished reading it, I wanted to leave. I stayed because there was a little seed of fear in my stomach, and it grew into a weight that planted my feet. I knew something was wrong and my body was basically screaming it at me. We waited 2 ½ hours before we we’re brought beyond the barrier of the waiting room and I was volatile at this point. I demanded that I needed an MRI. I raised my voice at any person who decided to place themselves on the list of people who wouldn’t listen to me and tell me that this pain was normal for a young and active female.

Unfortunately, I did not get the MRI that I demanded, but I did get the apology that I needed. After four hours, the supervising doctor came to my curtained booth and told that he was truly sorry I had to wait so long for help. I will never forget that moment. It was then that my fears were validated and I knew something was really wrong with my arm.

Within a week of that visit, I was sent to the Hand and Upper Limb Clinic at St. Joseph’s Hospital in London Ontario, and two days after that, I was driving to the Regional Cancer Clinic to see my new oncologist; a profession I assumed was titled “Cancer Doctor” before hearing the correct term. 

In March of 2014 I was diagnosed with a rare form of sarcoma: Ewing Sarcoma. This type of tumour arises in less than 3 of 1 million people, and typically occurs in individuals less than 20 years of age. I had almost made it past the statistical barrier, I would be turning 21 in a month.  

 The information hits you like a rogue soccer ball plummeting into your stomach and taking your breath away. I cried, then made a joke about smoking some weed, then cried more tears. I was terrified to lose my hair, I didn’t want to know what chemo was, and I didn’t want to spend weeks at a time in a hospital bed. In that doctor’s office, I seriously wished for the option to quit, to back out now before my reality became choosing a wig colour, planning for chemo days, and avoiding the common cold.

I fell into stigma’s trap and believed that I should be embarrassed that I had the “c” word. I didn’t want to tell anyone. I didn’t even want to tell my sisters. My mother and my partner at the time absorbed the news with me in that stale room where the words “you have cancer” were likely spoken more than once a day. My mother became my voice for me in those first few weeks and before I had time to realize how silly I was being for wanting to hide my illness, all four of my sisters were driving into town to stay the weekend and I was receiving calls from my family members. I wasn’t dying, but the news made me feel like my world was. The future I wanted wilted and floated away like ashes being scattered.

I tried to quit again when my mother called me to regurgitate the results of my biopsy and we had the official diagnosis. I was on the way back from the Toronto Aquarium, and the call served as a knell, echoing my impending treatments. Five days over night in hospital, then three weeks later I’d back in for a 3-hour treatment. That combination would quantify one full chemo cycle and I had four to complete. Halfway through my treatment, I was to have a surgery to remove the tumour, and at that point would need to stop treatment for a month. I wouldn’t even let my mother finish relaying the schedule before I tried telling her through a shaking voice, “I can not do that”. 

I’m not going to sprinkle sugar on any part of this story I will just condense it. Chemo was awful. For five days I was constantly hooked up to an IV pole pumping poison into my veins.  You don’t drop weight from projectile vomiting; instead your body seems to expand from all the fluids and steroids like a puffer fish. Most of the nurses were nice, but some laid their personal annoyances on me in words smothered in attitude. I’m not exaggerating. I was struggling enough and did not need my nurses making me feel like I was a burden on them, rather than cancer being a burden upon me.

The first round was the hardest to endure. I was terrified and blind. I was unsure what a week of in-patient chemo meant, or how I would cope. During that first round, I had shared a room with an older woman who moaned in her sleep and my stomach tightened every time that she came back from her radiation treatments as she wailed over her burns.  I didn’t begin puking until the third day. I began to have relentless migraines from dehydration, so the latter half of my first treatment was more difficult. I handled the rest of my rounds fairly well because I would smoke weed to ease my nausea and it certainly induced my appetite. My husband would take soup orders for all my visitors, and mine was always a spicy mulligatawny soup. Not once did I puke that soup back up. But chemo is chemo. It makes you sick, it changes your appetite, and it hindered my eye-sight and made my skin ridiculously sensitive to soaps and moisturizers.

Although I have now been declared cancer free, I am not quite free from cancer. I’m wondering if anyone can tell me if I ever will be. I rarely see myself as the hero of this story because I know I rode on the backs of my dog, and family members who carried me through this story. But when I rang that bell signifying the end of my chemo, I found that it did not signify the end.

My life now largely involves coping with a disability as a secondary result of my cancer. The surgery to remove my tumour left me with significantly less muscles in my right arm, a titanium pole instead of a humerus, and a concrete ball fusing the prosthesis to my shoulder. I was left with my wonky arm. I was told five minutes before surgery that I will be disabled for the rest of my life and it was certainly the hardest pill to swallow of all the ones I had been given in the hospital.

 Every day is different. There are times where I get frustrated and discouraged, or days where I am proud of how I’ve adapted, but sometimes I just need to be reminded that I am doing okay. 

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Update:

At the end of 2019 and during the beginning months of 2020, I returned to my family doctor as I experiencing relentless aches feeling an uncanny resemblance to the pain I was having in 2014 when they discovered my first tumour. Once again, I was turned away after multiple scans being told that the pain was caused by overuse, and the spot on the scan was reported as a minor injury. My tumour continued to grow after this conversation with my doctor in January, and it was resting just above my heart when I stumbled into the emergency room in March of 2020, unable to breathe or move my torso without pain. The very next day my medical team was assembled, and the chaos of tests and needle pokes began again. By early September – just about 6 years after my initial diagnosis- I was told for the second time that I had Ewings Sarcoma. My cancer didn’t metastasize, instead it was localized to a new area; sitting on my fourth rib and growing into my lungs towards my heart.

I am currently going through chemo therapy treatment to try and shrink the tumor away from my heart sack before they go in with their scalpels. I can tell you that the second time you’re told that you have cancer is not any easier than the first. I do not believe that the third time is the charm either.

Emily Marshall

Paws to Cry On

“Which one is biting my toes?”

The Lady was rhyming off the names of the puppies still left for sale, but I interrupted her politely while I struggled to look over my shoulder at the little puppy making a chew toy out of my left foot.

She had named him Cadbury, but we drove home deciding on Jax. He was my new puppy. My ‘congratulations you have cancer and your life is about to suck’ gift.

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I knew the world wouldn’t stop turning when I was diagnosed with Ewing Sarcoma in 2014. I couldn’t expect my support system to be available at my beck-and-call to distract me from the grenade that had just shattered my world; but a dog could. My family told me that I was being silly beginning week-long inpatient chemo treatments for six months straight, not knowing how I would be affected by the drugs or the surgery, while also managing a puppy pawing at me for all the attention I had to offer.

“You wont have the energy to do it” was their defence and I ignored them. I would would be buried in a pit of depression by now if I had listened to them, because I needed that dog more than any of us had ever thought possible.

I went from my hospital bed straight to my car seat after my first chemo treatment to go get Jax. I collapsed into bed early that night with extremely low blood pressure and a hammering migraine from treatment, but I woke at 12:00am to high-pitched puppy cries. Groggily I pulled jax out of his cage and brought him out to the back yard. He didn’t have to pee, he just wanted to run around and play while the pain behind my eyes screamed at me to go back up to bed. I brought Jax back inside and as soon as I locked the cage door he began whining again. I slid my fingers through the little squares, and I lightly rubbed his paws until he quieted down once again. I tried to climb back into bed, but We repeated this routine a couple more times until I began to understand that he just wanted some company. Drugged and delusional, I whispered to him “If you take care of me, I’ll take care of you” and I brought my pillow down onto the floor and laid beside his cage until my husband pulled me up on the bed the next morning. This dog already had my devotion, and I unwittingly had captured his. I had laid beside his cage that night, fingers touching his paws, and promised that I would always take care of him because I knew he was going to take care of me.

Puppy love at first sight

Jax still stares at the hospital every time we pass, wondering if I’ll be going back. For the weeks I would be there, he would visit every day. It became so known around the chemo floor that one time, the nurses let me sneak Jax up into my room. My mornings became too long as I waited anxiously to be disconnected from my IV pole so I could go outside and see my best friend. While I was stuck in the hospital reviving chemo, my visits with Jax helped me get through my days. He was often my only source of happiness during times when I felt I had nothing to smile for.

It’s always important to have visitors

The first time I got violently ill at home was the day we realized how attached Jax had become to me. We tried to keep him down stairs but he would bark and cry endlessly, until he stubbornly jumped the gate – which was twice his size – and he bounded over the steps up to my room. I was dry heaving and held my arm out to try and keep Jax away from my shaking body and the full garbage can, but he ducked his head under my arm and sat with impeccable posture by my side with my lifeless arm dangling over his back. Once I had stopped, he licked my face until the salty taste was removed from my eyes, and curled up beside be on the bed without disturbing my sleep.

We realized how much I was attached to him when I had to spend a month away from Jax when I was staying at my mother’s house to recover from surgery. I still got to see him but it wasn’t possible to make this happen every day, and when he would visit, everyone scrambled around us to try to keep him away from my surgery site and it left me unsatisfied and lonely each time he left. I needed to be back with my cancer buddy and I wasn’t coping as well without him.

Jax took care of me all through my cancer treatment, and continues to every day. If you’re picturing a dog feeding me medicine and putting a cold cloth on my forehead, I’m sure it’s pretty damn cute, but he took care of me in a different way. He was my main emotional support. I was a 21 year old female who had just been told she had cancer. Then I was a 21 year old female who had just been told she would never have full function of her arm again. That could create so much negativity, sadness, despair, longing, regret and anger inside of someone. I was all of those things because I know it is only natural to feel so, but I was lucky to have my dog to magnify the positivity I still owned. I needed him because I needed something to focus all of my love and joy on because it was easily weakened during every chemo treatment, or hurtle I had to jump . I needed to project it onto something so passionately that it wouldn’t be lost, and it never was. Even on my worst days where I’ve screamed “I CANT DO THIS ANYMORE!’ Jax has been there supplying me with a second wind. Any hint of my shaky voice that typically accompanies tears and Jax is by my side licking my eyes so furiously as if to tell me I’m not allowed to cry. It always has the affect of making me laugh even though I’m covered in slobber.

My family and friends were great throughout my treatment, and I will never discredit the amount they contributed to me successfully kicking cancer’s ass, but there is someone else who needs a little extra attention when I’m asked about my cancer story. I was carried through cancer on the back of a dog and I’m not ashamed to admit it. He bears more weight than I can, but it seems as though he doesn’t mind.