My First Cancer Birthday: A Diary of Coping

Image: Fine Art America

Mayank Bhatt

I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that some day I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live… My relationship with statistic changed as soon as I became one.
    – Paul Kalanithi, When Breath Becomes Air.

 

F

ifth June 2021 was my first Cancer Birthday. I was all set to celebrate. I had three good reasons, with two caveats. 

The good reasons: After a year of chemotherapy, the last three CT scan reports showed that the size of the tumour on the pancreas had reduced, albeit marginally. 

The caveats: The size of the tumour on the liver (and there are several small spots on the liver) remain stubbornly unchanged. Also, my carbohydrate antigen (CA) 19-9 tests numbers have risen significantly over the last couple of months. 

But Dr. Sabrina Allegro, the oncologist at the Humber River Hospital, assured me that CT scans are more accurate than the CA19-9 test, so I shouldn’t be overtly worried. 

We have a family tradition, Mahrukh, my wife, gets a cake for our birthdays. But as I am on a restrictive diet,. The cake – and quite a bit of fun – was missing on my birthday in March. It turned out to be more a sombre observance of a milestone, and not so much a celebration. 

When I met Dr. Allegro in April 2021, she said it was okay to have a “small” piece. “You can have everything in moderation,” she said. By then my birthday was long gone.

The cake was on my mind, and I planned to celebrate my first Cancer Birthday with a slice or two of it. But sometimes circumstances conspire to deprive you of simple pleasures. Those who believe in divinity call this the will of God, or the justice of karma. Those who are rational, count it as an unfortunate coincidence. 

I was again thwarted this time by Covid-19. After avoiding it for all of 2020, right up to June 2021, I got Covid-19, even after I had taken the first vaccine shot. I gave the virus to Mahrukh, too. 

While chemotherapy is an energy-sapping treatment that leaves you perennially tired and disoriented, Covid-19 causes an altogether different level of debilitation. It forced me to stay in bed, making even simple movement impossible. It was excruciatingly painful and gave me an adamant, irritating cough that was cured when my chemo sessions were restarted. By the end of June 2021, the virus left us as mysteriously as it had infected us. However, by then it was late to celebrate the first Cancer Birthday. 

The quarterly CT scan report of June 2021 also confused me, the measurements of the tumour were on a different scale than on the previous reports, which made comparison difficult. Also, Dr. Allegro’s oncology report on the CT scan worried me a bit because it had “not” before “overtly delighted.” Mahrukh, who has a master’s in English literature, and has more common sense than me, said it was a typo, but I was nervous. By the time Dr. Allegro confirmed that it was, indeed, a typo, we were already deep into July – more than a month after the first Cancer Birthday. 

The three months between March 2021 and June 2021 were difficult for me and traumatic for Mahrukh and Che. I was admitted to the Humber River Hospital in April 2021. Then, in May 2021, I was again kept under observation at the Cancer Clinic. In June 2021, on the day I was diagnosed with Covid-19, I fainted in the Cancer Clinic’s waiting lounge. 

◄►

Any major illness transforms a patient’s – really, an entire family’s – life… Patient, when hearing the news, mostly remain mute. (One of the early meanings of patient, after all, is “one who endures hardships without complaint.”). Whether out of dignity or shock, silence usually reigns, and so holding a patient’s hand becomes the mode of communication.
– Paul Kalanithi, When Breath Becomes Air.

 

Cancer is a tough adversary. Fighting it is to understand that it will eventually win, and that makes one more than usually philosophical, more accepting. One needs strong and dedicate support both at home and outside. Over the last year, I have realized this simple fact several times. 

I am lucky to have Dr. Allegro as my oncologist. Her brilliance is undisputed, her empathy, tangible. She radiates quiet authority. I credit her with the steady progress I have made over the last year. The first time I met her was on 5 June 2020 when she came to check me just after I had been diagnosed. Since then, we have met once a month and during that period, a doctor-patient bond has developed between us. Her easy warmth encourages those under her care to be brave about their circumstances and share information about their condition.

I wrote about Mahrukh and Che in the first cancer update in The Beacon in December 2020.  I may sound a bit repetitive here. But I can’t appreciate them enough. As with all married couples who have spent a better part of their adult life together, Mahrukh and I can’t do without each other and don’t quite know how to live with each other, either. We quarrel incessantly, and my cancer hasn’t tampered our zeal to argue; sometimes the arguments turn dreadful. 

I am always the first to compromise because I am dependent upon her emotionally. As John Updike (1932-2009) has so aptly observed, “No distinction cuts as deep as the one between the worshipped and the worshipping. I am condemned by nature to be dutiful and reverential.” 

I remind myself that immigration hasn’t been easy on Mahrukh. It has been a tough journey for her. My illness has made it tougher. She manages our home, manages my schedule and diet, and manages her job. After a bout of intense arguments, when I am filled with remorse, I send her links to my favourite songs on WhatsApp. 

The three things that have kept us together are our love of Hindi cinema, our love for Bombay, and the most important – Che. He is the glue that keeps our family tightly knit. After 26 years of being together, Mahrukh and I realize that we were wise to recognize that our only child needed both his parents. That child is now an adult; he was mature even as a child. He takes care of us, especially in this phase of our life when we need strong emotional support more than ever. Che is a judiciously impartial mediator between his parents. 

He comes to me at midnight to spend some time with me, making me talk – about anything that I want to talk, and the topics tend to be wide-ranging – from reminiscing about my father, the time when I was young, to my illness, my chronic pain. He is a good listener, but he has no patience with my attitude towards my illness, and he insists on changing it. I agree with his suggestions because they make sense and because of his sincerity and love. 

◄►

What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability… If the weight of mortality does not grow lighter, does it at least get more familiar?
–Paul Kalanithi, When Breath Becomes Air,

 

After a year of being a cancer patient, and going through weekly chemo, I am less scared. I was not as worried about my June 2021 CT scan as I was before my March 2021 CT scan. It has to do with a gradual acceptance that at Stage IV, I can’t win this battle against pancreatic cancer. When I was first diagnosed, I was told that the average life expectancy of a pancreatic cancer patient at the last stage is between 6 months to 2 years. I have beaten the first deadline, and will hopefully beat the second one, too. Some medical journals that publish research on the innovations in pancreatic cancer treatment – and which make no sense to me whatsoever because they are highly technical – also say that the average life expectancy is rarely beyond 5 years. 

Also, as I had reported in the first dispatch in December 2020, in Canada, pancreatic cancer has 92% mortality. So, by conventional medical wisdom, I should be dead either by mid-2022 or by anytime by or before mid-2025. However, I would rather believe what my friend and mentor said when he first heard about my cancer, “You will be in the 8%.”

I know that it is imminently possible that my body will succumb sooner rather than later to the tumour, and that it could only be a matter of time before I am referred to in the past tense. When that happens – when “Mayank is” turns into “Mayank was,” I want some of my friends and acquaintances to write my obit and share it on social media. I am not famous and won’t ever be, so I won’t get an obit in the mainstream media, but like everyone, I want to be remembered, and social media obits are good enough, especially because they give space for personal and snarky comments. 

I have been thinking of asking some of my friends to write my obit and send it to me so that I can read it while I am alive. Don’t you think obits should be written when the person is alive and about to die? At least s/he can read it before becoming history. What is the point in saying wonderful things about someone after s/he is gone and can’t enjoy the nice (but not necessarily true) things that are said about her or him? 

Obits written for me may be published along with some of my cancer essays in a book; it can be a readable book, especially if the obit writers are honest. I would bifurcate the obits into two categories – the ones that praise and the calibrated ones. Fulsome praise will come from those who don’t know me, and the calibrated ones from those who know me. Those who know me really well will probably excuse themselves, and mutter under their breath, “The world is a better place without him, but it is too early to speak badly of the recently dead.” 

I have also thought of attempting to write my own morbidly humorous obit. I read one by Emily Phillip, a retired schoolteacher in the United States, who succumbed to pancreatic cancer on 25 March 2015, 29 days after she was diagnosed. She concludes her obit thus: “I’ll leave you with this…please don’t cry because I’m gone; instead, be happy that I was here. (Or maybe you can cry a little bit. I have passed away). Today I am happy, and I am dancing. Probably naked. Love you forever.” Read Emily’s obit. 

◄►

And so it was literature that brought me back to life during this time. The monolith uncertainty of my future was deadening; everywhere I turned, the shadow of death obscured the meaning of any action. I remember the moment when my overwhelming unease yielded, when that seemingly impassable sea of uncertainty parted. I woke up in pain, facing another day – no project beyond breakfast seemed tenable. I can’t go on, I thought, and immediately, its antiphon responded, completing Samuel Beckett’s seven words, words I had learned long ago as an undergraduate: I’ll go on. I got out of bed and took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.”
–Paul Kalanithi, When Breath Becomes Air,

 

Depending upon how long I live, I am planning to do a six-monthly review of my life as a cancer patient. In the first report of December 2020, I couldn’t hide that I was distraught with fear, anxiety, and depression. Eight months later, I am still distraught with fear, anxiety, and depression. But during this period, I have developed two effective coping mechanisms: writing and working. 

I have been writing intermittently, completing my collection of short stories (Faith). For me, writing is not natural or easy, it has never been, even when I was a hack, and especially so now. This is because every time I sit down to write, I am acutely aware that I will never be able to write like the authors I admire, and I am not talking of Shakespeare. 

I started working on my short story collection even before my debut novel Belief was published in 2016, and in these past five years, I have written less and thought more about my characters. Then, in December last year, I realized that I could die without completing my collection and began to write fervently. Although I missed both the March 2021 and July 2021 deadlines that I had set for myself, I am happy that I will be completing the first draft soon. 

---

Read  short fiction  by author: Arthur in the Rains.  New Fition: remembrance-1

---

From experience I know that all writing is rewriting; it is an arduous process that is deeply dissatisfying. Yet, I persevere. I want to write a third book – a novel – before it is ‘The End’ for me. It will be a love story of an Afghani immigrant woman to Canada, and a Canadian Armed Forces veteran, of Italian descent, who served in Afghanistan. But that is a long time into the future, and I will most likely be dead either halfway through the first draft or even before I begin. 

So, my focus is on Faith, the collection of linked short stories. In the present format, it is a chronological narration of important years and events in Sharad, the protagonist’s life, from the time when he was a child in Bombay to his old age in Toronto. I want to abandon the chronological narrative format and randomly mix up the stories and the years in which they occur. I think that would make the book more interesting. This idea is borrowed from Julio Cortazar’s Hopscotch. I have also been thinking about whether I should also weave in my memoirs of our first decade in Toronto. The book would then become a combination of fiction and fact. 

The Covid-19 induced lockdowns for all of 2020 and most of 2021 so far have kept me at home, I have also continued to work ceaselessly for my employer – the Indo-Canada Chamber of Commerce. It is work that has defined most of my career in Canada during the last 13 years. I enjoy it and have seldom considered it work. Fortunately, I have had support and encouragement from most of the Chamber’s leaders who have accommodated my needs with alacrity and grace. 

Writing and working have sustained me and helped me maintain my mental health. 

◄►

I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that some day I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live… My relationship with statistic changed as soon as I became one.
– Paul Kalanithi, When Breath Becomes Air

 

Physically, the prolonged homestay and the innumerable rounds of chemotherapy have taken their toll. I have chronic fatigue and breathlessness, which is improving. I am barely able to walk a few feet without panting and being utterly exhausted. I climb stairs with enormous effort, and my feet are perennially swollen from water retention, which is caused by drinking 4 litres of water in 24 hours to flush out the chemicals pumped into me during the chemo sessions. On a nurse practitioner’s advice, I have reduced my water intake to 2 litres now and consume two glasses of electrolytes. 

I live with these changes because they are inevitable. The one change that I have found hard to accept is the drastic change in my face. Like Michael Jackson’s nose, my face is gradually disintegrating. The first to go was the hair, not just on the head, but even the eyebrows; then, as chemo continued, pigmentation on the face and especially the nose and the forehead became intense. I recently saw my photo clicked in February 2020 at a Chamber’s program and compared it to a recent photo. These photos are not of the same person, or so it would seem. 

I am in my 60th year, so, how I look shouldn’t matter anymore, but it definitely does. I even wrote about it in my first despatch in December 2020. I feel miserable, sorry for myself when I glance at the mirror, which I rarely do these days. I can’t explain why it does. I am embarrassed to say this. Almost everyone who knows my discomfort with my altered physical appearance tells me that it is the inside that matters, not the outside. I don’t believe that even for a moment. 

These days, primarily because of my illness, people treat me gently and kindly. But till recently, I was routinely and savagely bullied and abused. I practiced not being provoked and to stay calm. But cancer has changed me mentally, made me less tolerant, perhaps. It has become difficult to stoically accept abuse. I can’t understand how could or why would anyone hate me so passionately. Then again, hatred is not logical, rational. I take some solace that I am not alone, I guess everyone is affected. Social media has made bullying and abuse widespread and acceptable. 

So, for some people, I was always bad on the inside, and what was inside is now showing on the outside, too. I wish I had the utter nonchalance to react the way Jack Nicholson thanked his fellow nominees while accepting the Golden Globe for best actor. (As Good as it Gets, 1998). 

Like everyone else, I am no saint. I think we are all – bar none – a mixed bag of the good and the not-so-good. We try to convince ourselves that we are good and misunderstood, that people we know don’t know the real person that we are, or for that matter, appreciate the depth of our feelings and sincerity. 

We like to believe that we tolerate everyone we know because we are good, and even though “they” don’t deserve our attention, respect, love, we shower these on them because of the inherent good nature that compels us to ignore their ignoble abominations. The “they” include everyone we know. All of this, of course, is utterly delusional, but humanity survives and thrives on this make-believe. It works because all of us believe in it. 

◄►

Death, so familiar to me in my work, was now paying a personal visit… Standing at the crossroads where I should have been able to see and follow the footprints of the countless patients I had treated over the years, I saw instead only a blank, a harsh, vacant, gleaming white desert, as if a sandstorm had erased all trace of familiarity.
–Paul Kalanithi, When Breath Becomes Air

 

I am learning to accept things I can’t change, and one of the biggest hurdles that we face in our lives is to change the way others think of us. The proliferating philosophical wisdom of memes would have you believe that opinion of others doesn’t matter, and for the most part, it is true. But when people you consider close to you judge you wrong, you can only wring your hands in frustration.

I am reminded of two parables of the Hindu mystic saint Sri Ramakrishna Paramhans (1836-1886).

Once a man went to see a theatrical performance, carrying a mat under his arm. Hearing that it would be some time before the performance began, he spread the mat on the floor and fell asleep. When he woke up all was over. Then he returned home with the mat under his arm!

The ‘performance’ in the parable could be interpreted as life, and ‘returning home’ as death. I aspire to be the man who slept through the performance and returned home without regret. But I fail at transforming myself because I am not able to rise above the mundane; especially because I can’t stop believing that I have been wronged. 

And that brings me to Ramakrishna’s second parable.

Once upon a time, two friends were going along the street when they saw some people listening to a reading of the Bhagavata (Hindu scripture).

“Come, friend,” said one to the other, “let us hear the sacred book.”

He went in and sat down. The second man peeped in and went away. He entered a house of ill fame. But soon he felt disgusted with the place.

“Shame on me!” he said to himself. “My friend has been listening to the sacred word of Hari (God), and see where I am!”

But the friend who had been listening to the Bhagavata also became disgusted.

“What a fool I am!” he said. “I have been listening to this fellow’s blah-blah, and my friend is having a grand time.”

In course of time, they both died.

The messenger of death came for the soul of one who had listened to the Bhagavata and dragged it off to hell. The messenger of God came for the soul of the one who had been to the house of prostitution and led it up to heaven.

Verily, the Lord looks into a man’s heart and does not judge him by what he does or where he lives.

 

Although Ramakrishna brings in the element of divinity and the afterlife in this parable, it rationally establishes a correlation between action and consequence. Surprisingly, the friend who visits a prostitute is not penalized, and the friend who listens to a religious discourse is. We expect, based on our understanding of natural justice, that the reverse should have occurred. 

When I judge my situation from my perspective, I will always find myself right and others wrong, similarly others will judge the situation from their perspective and reach the opposite conclusion – that they are right, and I am wrong. Objectivity is a myth. In Beyond Good and Evil (1886) Friedrich Nietzsche says there are no good or bad actions. To many, Nietzsche personifies nihilism. But his views resonate with an atheist and a rationalist. 

◄►

Once I had been diagnosed with a terminal illness, I began to view the world through two perspectives; I was starting to see death as both doctor and patient. As a doctor, I knew not to declare “Cancer is a battle I’m going to win!” or ask “Why me?” (Answer: Why not me?)
–Paul Kalanithi, When Breath Becomes Air

 

I came across Paul Kalanithi’s (1977-2015) memoir When Breath Becomes Air while I was browsing the internet for books on belief, faith, atheism, and cancer. Kalanithi was an Indian origin American neurosurgeon and writer. The book is about his life and stage IV metastatic lung cancer. It was posthumously published by Random House in January 2016. 

Written simply, and by skillfully deploying his immense reading of literature, the memoir makes a deep impact, and forces one to ponder about life, death, love, family, kinship, and so many emotions that even readers with no firsthand experience of cancer would relate to immediately. For cancer patients, it is a book that gives the right perspective of dealing with an illness that – in most cases – will eventually win. And yet, the book doesn’t scare the reader. It, in fact, imparts many lessons of a practical approach to life as a cancer patient, in an easily relatable manner and style. 

Paul notes, “[The reader] can get into these shoes, walk a bit, and say, ‘So that’s what it looks like from here…sooner or later I’ll be back here in my shoes.’ That’s what I’m aiming for, I think. Not the sensationalism of dying, and not exhortations to gather rosebuds, but: Here’s what lies up ahead on the road.”

In his childhood, largely because of his devout Christian parents, he was a believer. Then when he went to the University, he turned into an agnostic. Later, during his cancer, he turned into a believer again. He describes the dichotomy between belief and non-belief. 

“To make science the arbiter of metaphysics is to banish not only God. It is to say, though that if you believe that science provides no basis for God, then you are almost obligated to conclude that science provides no basis for meaning and, therefore, life itself doesn’t have any. In other words, existential claims have no weight; all knowledge is scientific knowledge. 

Science may provide the most useful way to organize empirical, reproducible data, but its power to do so is predicated on its inability to grasp the most central aspect of human life: hope, fear, love, hate, beauty, envy, honour, weakness, striving, suffering, virtue.

Between these core passions and scientific theory, there will always be a gap. No system of thought can contain the fullness of human experience. The realm of metaphysics remains the province of revelation (this, not atheism, is what Occam argued, after all). And atheism can be justified only on these grounds. The prototypical atheist, then, is Graham Greene’s commandant from The Power and the Glory, whose atheism comes from a revelation of the absence of God. The only real atheism must be grounder in a world-making vision. The favourite quote of many an atheist, from the Nobel Prize-winning French biologist Jacques Monod, belies this revelatory aspect: “The ancient covenant is in pieces; man at last knows that he is alone in unfeeling immensity of the universe, out of which he emerged only by chance.”

The memoir touched me in a way nothing has in recent years; like a pair of hands had cupped my heart to protect it. 

◄►

One chapter of my life seemed to have ended; perhaps the whole book was closing. Instead of being the pastoral figure aiding a life transition, I found myself the sheep, lost and confused. Severe illness wasn’t life-altering, it was life-shattering.
–  Paul Kalanithi, When Breath Becomes Air

 

Paul passed away before he could finish writing the book, and his wife Lucy wrote the epilogue, describing the final days before his last breath turned to air. Lucy, an internist, describes Kalanithi’s herculean effort. She says, “When Breath Becomes Air is, in a sense, unfinished, derailed by Paul’s rapid decline, but that is an essential component of its truth, of the reality Paul faced. During the last year of his life, Paul wrote relentlessly, fueled by purpose, motivated by a ticking clock. He started with midnight bursts when he was still a neurosurgery chief resident, softly tapping away on his laptop as he lay next to me in bed; later he spent afternoons in his recliner, drafted paragraphs in his oncologist’s waiting room, took phone calls from his editor while chemotherapy dripped into his veins, carried his silver laptop everywhere he went. When his fingertips developed painful fissures because of his chemotherapy, we found seamless, silver-lined gloves that allowed use of a trackpad and keyboard. Strategies for retaining the mental focus needed to write, despite the punishing fatigue of progressive cancer, were the focus of his palliative-care appointments. He was determined to keep writing.”

Lucy emphasizes, “Paul’s decision not to avert his eyes from death epitomizes a fortitude we don’t celebrate enough in our death-avoidant culture. His strength was defined by ambition and effort, but also by softness, the opposite of bitterness.”

That is the key to combatting cancer – ambition and effort combined with softness and most important of all – the opposite of bitterness. 

◄►

Mayank Bhatt is a Toronto-based author. His debut novel, Belief was published in 2016. He is also Contributing Editor of The Beacon

Mayank Bhatt in The Beacon