How I used art to dethrone cancer, the emperor of all maladies

When a terminal illness gave my life an expiry date, music and poetry came to me, whispering words of wisdom, “Let it be!”

Partly frozen because of disuse, my hands could not hold on to or manoeuvre even a slim novel during chemotherapy. | Photo Credit: Getty Images/iStock

This article has been a year and 41 days in the making. Before the internet rushes in to brand me as a serial procrastinator, perhaps handing me a pithy self-help book and an ADHD diagnosis, let me explain.

It has taken a year of rumination, two years in therapy, three years of recovering from the pandemic, and four years of distance for me to finally pull myself together and tell the world about my cancer journey. Strangely, that was the easy part. Harder still was the process of picking a lede for this article. On World Cancer Day (February 4), how do I introduce myself to you, dear reader, so that I don’t end up being a statistic, a sob story, or an afterthought inside your head?

I thought back to when I first put pen to paper (or cursor to Word) for this article. I thought back to December 2022, a month when all anyone could talk about was “Spotify Wrapped”, an annual recap of one’s listening activity. I remember heading to the music streaming app in great anticipation, eager to explore what my year in music looked like. I wanted to share the results with everyone. I wanted them to appreciate (and, let’s be honest, to judge) my musical habits.

So, what did 2022 in music look like for me? The Spotify gods told me I had spent 58,828 minutes tuned into a bizarre and unholy mix of tracks. Let’s do the math: 58,828 minutes amounts to 980 non-stop hours of music, which translates to nearly 41 days of never-ending songs. In other words, I spent a clean month-and-a-half in 2022, just living, breathing, and feeling music. Phew!

No one around me was really surprised by this figure. Not my college roommates, who would beg me to change the track when they caught me listening to Kavita Seth’s song “Iktara” on loop. Not my peer group, to whom I gave an impromptu performance of Nazia Hassan’s “Aap Jaisa Koi” during a pandemic Zoom meeting. Not my parents, who, to be honest, are the ones who planted and happily watered the seed of this obsession.

And definitely not my brother, who, when I was in an isolation ward, being treated for blood cancer four years ago, searched high and low for our old iPod Shuffle. He packed it to the brim with my favorite songs, and passed it onto my oncologist to give to me. Despite the chaos of my sudden hospitalisation, I remember that one day very clearly. For the first time since I was rushed to the ICCU, I fell into a deep, restful sleep.

It has taken me a long time to realize, accept, and articulate this, but I’m an artist at heart. | Photo Credit: By special arrangement

Where am I?

I am, perhaps, getting ahead of myself. Like Alice in wonderland, let’s begin at the beginning. I am sure you all remember 2020. It’s probably hard for anyone to push out of their minds that blight of a virus we must not name. That year, countless lives were lost, families were left shattered, and aspirations turned to dust. I didn’t have any big dreams for 2020. The three humble resolutions I recorded in my journal read as follows: “Record more oral narratives with elders, actively give dating a shot, and work with my hands to create more art!” By the end of that year, however, I had lost my grandfather to COVID-19. I was confined to a bed in my room, thanks to an immunosuppressed body. I was learning how to hold a pen and write all over again.

In his song “Everybody’s Free to Wear Sunscreen”, Baz Luhrmann talks about “The real troubles in your life […] things that never crossed your worried mind. The kind that blindside you at 4 p.m. on some idle Tuesday”. Luhrmann got everything right, everything but the day. On one surreal Monday morning in August 2020, shortly before I was to log onto a team call and discuss content strategy, I woke up bleeding from my mouth. (Mondays, right?)

When I now look back at that eventful day, it amazes me how little the blood scared me, and how much more terrified I was of the debilitating and nauseating headache that accompanied it. A reluctant visit to the hospital and a few quick blood tests later, I was swiftly taken to the ICCU, where I was left circling the drain with 3,500 platelets and a haemoglobin level of 4.5. My body had essentially mounted a bloodless (pun fully intended) coup against itself.

In the midst of a chaotic pandemic, my neighbours and friends became my guardian angels. Without hesitation, they rushed in to donate life-saving blood and platelets. Many people from my workplace supported my family through all the contingencies involved in my hospitalisation, taking care of all the mindless bureaucratic tasks.

For two days, the doctors and nurses poked and prodded me, installing IV drains, drawing bone marrow samples from my spine. By the third day, I heard the dreaded “C” word through the medicine-induced haze. It was official: in the middle of the COVID-19 pandemic, I had been diagnosed with the original big ‘C’: Cancer.

For someone already struggling with anxiety about the rapidly-unfolding pandemic, this was the absolute last straw. My brain had had enough, and it decided to protect my body by going into full shell-shock mode. Every day, my parents and brother (the only ones allowed to meet me) would don masks, capes, PPEs—every possible safety layer—before they were allowed to meet me for a grand total of five minutes in the isolation chamber to which I was consigned. I would spend most of those five minutes begging to be taken home, unaware of the magnitude of the situation, unwilling to face its bitter reality.

For two weeks, I relied on the oxygen support and blood transfusions I was given in the ICCU. Then I was moved to an isolation ward, where I spent a further two weeks recuperating. Chemotherapy had depleted my immune system, and because of the pandemic that was also raging outside, visitation rights got curtailed to only one person, who was allowed to stay with me, and my grief, full-time.

The sudden onset of the disease, coupled with COVID-19, gave me no time or space to understand exactly how my body and mind had changed. The first shock came when I was trying to sign consent forms. I realized that in the space of two months, my body had let go of the muscle memory that made writing possible. For a writer, especially one who had just the year before undergone significant wrist reconstruction due to an old injury, this was a cruel blow.

It has taken me a long time to realise, accept, and articulate this, but I’m an artist at heart, and art has always been my refuge, my saviour, my strength, my joy, my very reason for existence. In the cold confines of a solitary hospital ward, it was art—music and poetry—that came to my rescue again. Each day I would repeat these lines by poet Dylan Thomas to myself: “Do not go gentle into that good night… Rage, rage against the dying of the light.”

Music has always been my refuge, my saviour, my strength, my joy, my very reason for existence. | Photo Credit: Getty Images/iStock

Music to the rescue

As my blood factors improved, and the prevailing chatter between doctors and nurses moved from critical care to maintenance and recovery, the prospect of long-term physiotherapy loomed large. I started small—idly squeezing stress balls and clinging to family members when I took short walks between the bed and the washroom. I didn’t know this back then, but those walks, and the daily chemo trips to the hospital, would be my only movements for the next year.

I had walked into the casualty section in a severely depleted condition. I was discharged in a wheelchair. I needed the support of a frame to move around. That period was both draining and dispiriting, but it was only the beginning. Another five months of chemo were due. As I sank deeper into grief, my family gave me the space to process my emotions, while still raising my spirits.

That is how I returned to my one true love—music. You see, I have never been anything more than a bathroom singer, but when it comes to listening to music—in any language, form, or style—I’m nothing less than devoted. I was the kind of kid who would walk around with my Walkman permanently clipped to my shorts, earphones firmly wedged in. I would stop at every cassette shop for a “fix”. I could not even study without music. The Walkman became the only “distraction” allowed to me during my board exams, mostly because my diminutive mother could never stash it away high enough for my 5’8’’ frame to reach.

It was also mom who realized that music was her only chance to draw me back from the deep pit of anger and despair I had slumped into. She knew she had to take me back to my refuge—the world of art. So, one night, once I had taken all my heavy and draining medications for the day, she suggested we play a little game.

Post-cancer body dysmorphia hit me like a ton of bricks when I saw this post-chemo birthday pic. | Photo Credit: By special arrangement

“Open YouTube and play one song that I haven’t heard before”, she said, “and I will do the same.” It was an intriguing prospect, even though she had an advantage, purely on the basis of more lived experience. I was sold. As I snuggled up against her for the night, I did not realize I had signed up for the best kind of personalized therapy. All I had to focus on, as the Bee Gees so famously put it, was “Stayin’ alive!”

I am deliberately being facetious here. Fighting the debilitating side effects of chemo was in no way an easy task. In my chemo months, I would wake up in the early hours of the morning and mentally prepare myself for the day ahead. Black Panther actor Chadwick Boseman died of cancer around that time. “Pray for me”, a song from the film’s soundtrack, played in my mind for days on end.

Beating the odds

Once I had willed myself to face the day after hearing a song or two, we would head to the hospital and line up early for a bed. Pandemic or no pandemic, cancer is ruthless. It makes several demands on patients and caregivers, but there was no time or energy for self-pity. One look at the diversity in the room—the kids, the elderly, the lonely women—was enough for me to understand that cancer spares no one.

What does one do during the endless hours of chemotherapy? Gaunt and weak, I would, on some days, sleep as arsenic-based drugs made their way into my veins. In the beginning, my hands, partly frozen because of disuse, could not hold on to or maneuver even a slim novel. Thanks to consistent and challenging physiotherapy sessions, however, I began propping up my phone against the bed to distract myself.

I think of myself as both a rational and emotional person. I switch between these states, as needed. So, when people began trying to comfort me, saying math was on my side, that I could recover from my type of cancer, I didn’t know how to tell them that the best-case scenario, mathematically, would be to not have cancer at all.

Still, here are the numbers. Back in 1957, when my form of cancer—acute promyelocytic leukemia—was first diagnosed, the median survival rate was a week. This means that only 60 years ago, I would have survived just a week had I shown up at a hospital with my symptoms. Today, if you somehow make it through the first month of treatment, you are left with a 90 per cent chance of living for another 10 years, much higher than other forms of cancer. This gives me a 90 per cent chance to make it to 2030.

Those are not terribly bad odds, at least not for cancer. On my good days, I am grateful for having made it out of hospital, for being given a second chance at life. I have inherited my parents’ quiet stoicism and refashioned it into my own brand of pragmatism. But on my bad days—I will admit, there are several of those—I am filled with rage at what I have lost. I drown in endless grief, and am mired in unforgiving nostalgia for better days. I spend such days dredging through the depths of my mind for happy memories, but sometimes, even that isn’t enough.

I wish I could tell you my story is heroic, transformative and inspirational. Sometimes, yes, it is all of that, but sometimes it is not. Sometimes I’m in a deep pit of despair, desperately reaching for the light. And it is at these times that the humanities—music, poetry, the fine arts—come to my rescue.

Gaunt and weak, I would sleep as arsenic-based drugs made their way into my veins during chemotherapy. | Photo Credit: By special arrangement

There’s a poem by Lucille Clifton I read out to myself in such moments:

“…here on this bridge between

starshine and clay,

my one hand holding tight

my other hand; come celebrate

with me that everyday

something has tried to kill me

and has failed.”

Bridge over troubled water

I don’t call myself a “cancer patient”. I choose instead the defiant moniker of “cancer survivor”. I don’t at all relate to the prevalent narratives of fighting cancer, battling cancer, or war against cancer. For one thing, I’m a pacifist—a lover, not a fighter. Also, if my cancer experience was a fight, it was a knockout. Cancer mugged me in a side alley and beat the living daylights out of me. I didn’t “beat” cancer; I barely survived, with my sanity hanging on by a thread. Best not to speak of vanity—that didn’t make it to the other side.

I had not attempted to shave my head or eyebrows during chemo; there is a certain finality to the act, which, I think, my distressed parents would not be able to stomach. For months afterwards, I stubbornly resisted photographs. I could no longer relate to the person I saw in the mirror. I finally relented and joined a family photo during my first post-chemo birthday. Big mistake! The full effect of the post-cancer dysmorphia hit me like a ton of bricks.

The changes were superficial, but also functional. The toxic chemotherapy medication caused significant damage to my peripheral nervous system, which controls balance, stability, motor skills, and sensation, among other things. From being an independent soul who could put together an entire 88-page magazine, all by herself, and then report stories from three north-east States in the following four days, I turned into someone who needed help just to make it to the washroom.

Over time, as I broke the shackles of self-pity and moved past the cyclical grief about my condition, I began embracing help from any source that made it available. Even better, I learnt to seek help when I needed it. I no longer tried to do it all. I focussed firmly on the present moment, jettisoning both the anxieties about the future and sadness about the past.

As the world opened back up again, I returned to familiar haunts, took long drives, and visited that part of Mumbai, which, to me, is the most familial—the sea.

There’s a picture on my phone that still gives me goosebumps. It’s from the day before my hospitalisation—a warm, sunny Sunday. I remember that day with crystal clear precision. Lockdowns were slowly and tentatively easing. Though under very strict conditions, it was possible for us to step out. As a family, we decided to visit Marine Drive. I took a picture of the calm, placid sea for posterity, and then gingerly sat down on the warm stone with my brother. Just then, a deliciously large wave came splashing down and soaked us through to the bone. I still remember the sensation of the sweat, salt, and sea spray against my skin.

Long after that moment, long after lockdowns, long after chemo, I still could not bring myself to set foot on Marine Drive. That place had become fraught with memories. Only months later, when yet another warm, sunny day had rolled around, could I no longer deny myself joy in the face of fear. So, holding the loving hands of my family, I finally made my way back to the shore.

When a warm, sunny day dawned on Mumbai post the pandemic, I made my way back to the Marine Drive shore, back to the light. | Photo Credit: By special arrangement

Given the state the world is in today, happy endings are in short supply. But as poet Emily Dickinson so eloquently put it:

“’Hope’ is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -…”

As a family, we had continued to hope for good news throughout my treatment, and after six successful months in remission, we heard the words we had all been waiting for—I was finally “cancer-free”. The chemo IV port that had been installed just beneath the skin of my chest was finally taken out, once and for all. Life is endlessly funny. As the chemo port was taken out of my body under local anesthesia and shown to me, I could have sworn it looked exactly like an earphone!

As for me, I plan to live, thrive, and survive, no matter what. One of my favourite nazms (verses) by poet Kumar Pashi reads as follows:

एक कहानी ख़त्म हुई है एक कहानी बाक़ी है

मैं बे-शक मिस्मार हूँ लेकिन मेरा सानी बाक़ी है

One story has come to an end, another has just begun.

I may be in ruins, but I am unmatched when the day is done.

Mahithi Pillay is an award-winning journalist and internationally-published poet. She currently works as a multimedia content producer.