Those who survive are not the only ones to be celebrated. All who fought bravely are winners.
My dad, a highly qualified engineer, was meticulous with his notes and made To-Do lists every morning. In his little blue notebook, I recently found a few pages of writing about his hopes to live; scribbles of words like “keep fighting” and “believe in a miracle.” Those are the words we would tell him periodically.
A 2 and half year battle has come to an end.
Cancer, you fucking bastard.
When my father first learned of his diagnosis in a summer afternoon of 2012, I was holding his hand as the gastroenterologist calmly spoke about the serious nature of his cancer.
“How much time do I have left, doctor?” he asked, just as calmly. It takes great courage to ask such a question.
“At this stage, typically 6 months,” he responded.
I tightened my grip on my dad’s hand.
As we left the doctor’s office, my dad asked me, “Ab kya karein Minni?” (What should we do now?)
“Don’t worry papa, we will fight this.”
Without any change in countenance, he went back to work.
That night, I sat for hours in our puja room, although I only visit it briefly during festivals of deities.
As a woman, I may be able to make a new life with my body but saving a life is in the hands of credible doctors and if our faith permits, God.
So I prayed to God that night — “You know what is best but 6 months is too less. Just give us a chance to fight this together.”
Thereafter began his regimen of intense chemotherapy, often with many hospitalizations on account of the side-effects from medication than the disease itself.
And my dad fought it all with incredible bravery.
In 2 and half years, my father went through every possible treatment that doctors could prescribe. A man whose only ailment was managing diabetes with diet and simple medication, and no history of smoking or alcohol consumption, was diagnosed with stage four cancer. A series of fevers are what helped us identify the invisible disease and the mets to the liver were what eventually shortened his lifespan. Though my father was not eligible for a liver transplant, which in and of itself, has tremendous risks and failures, we do not live in such an advanced age where doctors can replace a diseased liver with an artificial one. Someday perhaps.
Even then, we tried every possible recourse to save him. From radioembolization (minimally evasive targeted therapy with tiny radioactive beads) to clinical trial approved medication available for his profile and even employing medical marijuana to manage side-effects.
And the most amazing part- my father continued to work all through this while. He did this, in part, to maintain his health insurance and I would assume, a sense of normalcy. At times I wonder that his affliction was not so much so as cancer as it was being a workaholic.
Sloan Kettering in Manhattan was our first choice, purely based on rankings and proximity to our home. Our oncologist treated my father like a statistic rather than a human (a common characteristic of large private, research hospitals), coming in for only 5 minutes and answering questions in a rush. After several months, we paid a visit to MD Anderson, the top ranked cancer hospital in the US, for a second opinion who discovered that the Sloan oncologist had not even bothered to discover that my father had a wild kras tumor type, therefore requiring a different type of chemotherapy.
When Sloan kept pushing my father to agree to a hepatic arterial pump, on which Sloan has a patent and multiple studies proved that the device serves no key benefit, we knew we had to exit from that hospital. We switched base to another Cancer center in Northeast Philly and found the staff and doctors to be far more personalized and in short, caring. In the midst of one of those new chemo rounds, the oncologist found that dad’s tumor marker was significantly decreasing with every sitting. My dad was almost certain that he was heading towards remission and he even did some bhangra at home in eager anticipation. When the CT scan showed results contrary to our expectations, the whole family was disheartened. After one year of additional chemotherapy to halt the growth of tumors, the new hospital, too, had run out of options.
Whenever any doctor would remark that “a disease of this stage will ultimately take your life”, he would absorb it all with strength and patience.
My father seldom depended on anyone for help; not even me, his primary caregiver. He would offer to drive himself to chemotherapy appointments to avoid us any discomfort. He went back to work several weeks after a major surgery to assist his co-workers, despite doctor’s recommendations to take more rest. When I volunteered with CRY America in New York City, he would enthusiastically tag along to set up the venue for their Annual fundraising Cricket tournament and 5K Walk. I distinctly remember when his face was completely filled with blemishes as a side-effect of his medication and he still proceeded to volunteer, despite all the staring from onlookers. There were times when we needed some repair at home, and he would employ his engineered Midas touch to fix the broken appliance himself.
It was only towards the last 2 months when he had difficulty completing basic tasks like walking and driving when he filed for disability. I remember the day when his hand and feet were blistered owing to chemotherapy and he called out my name to help him open a bottle of water, as he sat in a wheelchair.
He finally accepted that he needed help. That fact probably broke his strong heart more than anything else; that he had lost his dignified independence, something he prided upon by living in the States. I would even keep the bottle caps slightly loose so he wouldn’t ever have to ask me again.
In the midst of these 2 and half years, we have been fortunate to celebrate happy moments too. His pricless voicemails on my phone, where I can replay his voice again and again; videos of my dad cutting his 55th birthday cake, photos of him visiting California to see his son’s new apartment. The last video recording on his phone is that of my own dance performance at a temple. How lucky I have been to celebrate my parents’s 25th anniversary abroad with my savings; though it will take me many lifetimes to repay his debt of gratitude.
He even made a Bharat matrimony profile for me, in the hopes to see me happily wedded before leaving. Using those results, he made a comprehensive Excel spreadsheet with the tens of matches he liked best, ranking those men on salary and qualifications, typically doctor or engineer. My corny humor closely resembles his and even in this story, there is some humor. He left without ever revealing the password for that profile so now my photo and criteria are forever imprinted on that dreadful site.
For 2 and half years, I had been cautiously lying to my mother and grandmother about the reality of my father’s condition to pacify their fragile hearts. When the doctors would remark that his disease had worsened, I would tell them that there was some improvement and he would get better. In those moments, there was hope that those lies would miraculously manifest into truth.
I do not know which is worse. A death that is quick but bereft of final closure, or a prolonged illness where there may be hope for some more moments of connection but ultimately seeing a loved one weaken slowly; your heart tearing into pieces all the while.
Many relatives and acquaintances came forward with their own philosophies but it was more so to satisfy their own beliefs than it was to appease our minds. Past karma was notably mentioned and that we must all perish one day. But if I were to present my dad’s good karma in this lifetime as evidence, he should not have had to suffer so tremendously.
As much as I would have loved to debate and theorise my own philosophies in better times, I had only one response floating in my head (and I say this as politely as I can ) – shut up.
When we had no further options in the US, we departed for India. The day we left, I read a headline about Oliver Sack’s terminal illness of the same nature as my dad. When a renowned neurologist was accepting defeat with his illness, I wondered what kind of emotional peril my dad must be going through. I had only seen my dad cry once throughout his illness; perhaps he cried more in private like his daughter.
On the third day of my dad’s admission in the ICU in New Delhi, the doctor showed us the disconcerting numbers. He spoke at great length about his imminent death and if we wished to end his suffering by removing the countless tubes feeding into his body. I saw my father’s smiling face flashing before my eyes and found myself falling from syncope. The nurse gave me glass of water as my brother helped me rest on a chair.
The last day of his stay, my father’s eyes were open but he was completely dependent on machines. My brother and I used those fleeting moments to let our dad know how much we loved him.
“He can hear us, right?” we asked the doctor.
The doctor nodded in affirmation.
We showed him photos of happier times from our phones and I cracked some silly jokes, hoping he would start laughing as he would always do.
What a more effective way to realize your own impermanence than to see someone you love so much pass away right before your eyes.
There was some peace in knowing that my father was cremated in the same grounds as his own father in Delhi. Soon after, my family had to adopt a fortnight worth of Hindu Brahmin rituals to wish his soul in peace.
One day after my dad’s passing, my brother and I were asked to feed a cow in Pilanji Gaon, suggesting that the cow’s nourishment was akin to feeding the aatman of my father. Strangely enough, the experience of feeding this animal, mooing and pooping dung at random intervals, was humorously soothing. It distracted us from reality. In fact, in those 13 days of “shanti” for my father’s soul, there was hardly any time for self-introspection as flocks of relatives and villagers flooded our home to pay their condolences.
During one of the main “havan” ceremonies, I saw an aged panditji smoking a cigarette during a break. Anger boiled in my veins. How could this man live to be so old when my father never smoked and died decades younger?
Sadly, once cannot bring God to court to lessen the sentence of a disease as one can do with judges.
They say parents are a manifestation of God divine because no one can love you as much and as unconditionally as them. The tables had turned a bit as the man whom I always consulted for all pertinent decisions about my life had suddenly become like my own son to care for.
Rest of my lifetime will spent in furthering my dad’s legacy. Healing will be an ongoing process as others with lost parents can tell you. Future birthdays, anniversaries, and memories shall inevitably invoke the same grief.
My anger with God shall resolve on its own in due time, but I am grateful for the opportunity to serve my father.
Pardon me as I take leave to finish errands. I have just updated my own To-Do list in my dad’s notebook.