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PATIENT / CAREGIVER CORNER
Year : 2020  |  Volume : 3  |  Issue : 2  |  Page : 218-220

Making cancer worth the while


The Residency, Vishweshwar Road, Goregaon East, Mumbai - 400 063, Maharashtra, India

Date of Submission03-Mar-2020
Date of Decision07-Mar-2020
Date of Acceptance18-Mar-2020
Date of Web Publication19-Jun-2020

Correspondence Address:
Main Jonita
The Residency, Vishweshwar Road, Goregaon East, Mumbai - 400 063, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/CRST.CRST_61_20

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How to cite this article:
Jonita M. Making cancer worth the while. Cancer Res Stat Treat 2020;3:218-20

How to cite this URL:
Jonita M. Making cancer worth the while. Cancer Res Stat Treat [serial online] 2020 [cited 2020 Jul 12];3:218-20. Available from: http://www.crstonline.com/text.asp?2020/3/2/218/287254



In May 2018, my father turned 60 years old. He is an engineer and a management graduate and has worked with national and multinational firms. At the age of 54 years, he took over the responsibility of marketing my grandfather's business. As my grandfather managed his business until his dying day at the age of 78 years, turning 60 was no indication whatsoever for my father to slow down. My father takes pride in both, his work and leisure. He is sharp and meticulous at work but also enjoys gardening, exercising, traveling, partying and socializing with friends, and playing with his grandchildren.

In May 2018, he developed a cough; it was not severe, but persistent. By June, he started feeling a pain in his back when lying down and was rapidly losing weight. Mid-June he visited an orthopedic surgeon for the back pain, who on account of his weight loss referred him to a chest specialist, suspecting it to be tuberculosis. After an X-ray, a positron emission tomography (PET) scan and biopsy, he was finally diagnosed with Stage IV Lung Cancer — metastatic adenocarcinoma of the left lung. My father has never smoked in his life.

All through the diagnosis and initial treatment, it was my father who held our family strong. He said that he would fight it through, and life would continue as normal. Dumbfounded, we accompanied him to the oncologists. He asked them questions and evaluated all options, while we hung on to every word. One day, while my father was being examined in another room, I timidly asked the doctor, “How long does he have?” “Two years, give or take,” said the doctor. “His disease is terminal and there is no cure available. Hence, the treatment will be focused on arresting the disease in its current state. Surgery is definitely not an option.”

We initially began the treatment with a medical oncologist at Hinduja Hospital (Mumbai, India). We were then advised to consider the Tata Memorial Hospital (TMH) for treatment, as it is known to be the best and most efficient. Our limbs trembled at the thought of long queues and tiring protocols. A few months before the diagnosis, my father had insightfully upgraded his health insurance plan to cover cancer. This made the treatment affordable. As prescribed, we began the first of three rounds of chemotherapy (carboplatin and pemetrexed) at Hinduja Hospital. Meanwhile, his biopsy sample was sent for gene mutation testing.

We are natives of Virar, (Maharashtra, India) and though we can afford to travel by car, the sheer distance and traffic situation in Mumbai have made us compulsive train commuters. On the day my father completed the first round of chemotherapy, he very spontaneously took a crowded train back home, all by himself. We anticipated side effects, but none appeared. The 2-month-long cough disappeared. The gene mutation results came back. My father tested positive for the epidermal growth factor receptor mutation, and was now eligible for targeted therapy. The doctors at Hinduja advised three more rounds of chemotherapy before moving on to targeted therapy.

Eager as he was to receive the best treatment, my father made an appointment with a senior, award-winning medical oncologist at S L Raheja Hospital (Mumbai, India). The doctor advised that we could switch to targeted therapy immediately. Being a veteran, he knew that our insurance would not cover targeted therapy, so he advised my father to undergo another round of chemotherapy and prescribed osimertinib in the course of continued treatment after hospitalization. Osimertinib is a first-line drug and costs about ₹ 4.8 lakhs for 3 months' worth of tablets. Cancer and its side-effects aside, greater battles were fought availing insurance for the best treatment possible.

What is remarkable is that during all this, my father did not miss even a single day of work, drove by himself, used public transport whenever suitable, exercised regularly, and maintained a perfect picture of normalcy. He did not like us uttering the word “Cancer” in front of him, let alone informing our friends or relatives about his condition. Only his siblings knew. A while before his diagnosis he had planned a reunion with some of his college friends at our home in August 2018. He went ahead with his plans and hosted about thirty people at our home for 2 whole days, without anyone having a clue about his condition.

We continued with targeted therapy, as it showed favorable results. By the end of November 2018, the cough returned. We went back to our oncologist; he referred to the PET scan report from mid-October 2018 and decided that the cough was insignificant. We went home reassured, celebrated Christmas, and marveled at my father's strength to continue work and life, as usual, enduring cancer. However, the cough continued, and at the end of January 2019 we got another PET scan done – there was disease progression. Now, there were two tumors in my father's lungs. To this my father said, “I feel this is all a misunderstanding. I do not think I have cancer at all. There are no major symptoms.”

He was prescribed three rounds of chemotherapy, this time cisplatin with gemcitabine. That is when we finally made our way to TMH, to seek a second opinion about the treatment. We met with a senior medical oncologist; he was kind and reassuring. He asked us to proceed with the prescribed treatment. In addition, he asked us to get a Foundation One genomic test done on the new tumor. We went for a CT-guided lung biopsy to extract a tumor sample. Every time the doctor inserted a needle in my father's lungs, he coughed. Each cough impeded the extraction. A few attempts later they got a sample, but by the end of it, my father vomited blood. He had to be put on oxygen for a few hours to help him breathe normally. Seeing him helpless, hurt, and exhausted for the first time in eight months made his cancer finally look real to me.

Three rounds of cisplatin and gemcitabine were administered 21 days apart and each round was broken into two doses, administered eight days apart. My father was at Raheja Hospital practically every week. During hospitalizations, he would not even drink water, and the idea of being hospitalized made him nauseous. He insisted on visiting the hospital alone and on getting admitted and discharged all by himself, worked remotely from the hospital while battling to claim the insurance on time, and traveled back home in a crowded local train, all with great efficiency. Not having eaten anything through the day, sometimes he would treat himself to kheema pav* at an Irani café near Mahim station on his way back home.

In March 2019, my father was to attend the wedding of his friend's son in Nainital. After a great deal of contemplation, he decided to go. The very next evening after his chemotherapy, he flew to Delhi with my mother and made the 8 hour journey by road to Nainital. He enjoyed the extravagant ceremonies over the next 3 days and returned to Mumbai. The next day, he was back at the hospital for another session of chemotherapy.

At the end of three rounds, the disease showed a partial response to treatment, as did the side-effects. Gradually, he started losing hair, but we still had 3 more rounds of cisplatin-gemcitabine to go. His hair fall was not so stark but bothered him. Hence, in May 2019, he shaved his head. The disease that he had very artfully masked for about a year finally stood unveiled. There was nowhere to hide, and each person we met enquired about his health. He would blatantly lie to them about having a scalp infection, but people knew the truth. I requested him to acknowledge it, but he refused to do so. He did not want people's sympathy.

By the end of May 2019, he had finished six rounds of chemotherapy. We heaved a sigh of relief; the endless hospitalizations had left us tired. It did not seem to bother my father much; he continued with his life as usual. Another PET scan in mid-June 2019 showed disease progression; it was exasperating. Despite all the treatment, his condition was worse than it was a year ago. The assistant oncologist at Raheja Hospital explained that the disease is very aggressive, and all this treatment was only to buy us some time.

We then came back to TMH and were once again advised to get a Foundation One genomic test done on the new tumor. This time my father was prescribed three rounds of docetaxel and ramucirumab. Docetaxel was expensive, and by now even our insurance company was exasperated. Claiming insurance became increasingly tedious. For the first time ever, my father did not work during his chemotherapy and instead channelized all his energies toward claiming his health insurance.

In August 2019, my father started losing sensation in his fingers and toes. His palms and soles felt cushioned, and every time he bent his neck, he could feel a sharp pain running through his entire body. He had developed peripheral neuropathy, which was a known side effect of ramucirumab. Nonetheless, he underwent an magnetic resonance imaging (MRI) to confirm it. The MRI showed a small tumor in his brain. However, both oncologists and neurologists said that it was asymptomatic, so we continued with chemotherapy. Soon, the Foundation One genomic test reports came in, and my father was again eligible for targeted therapy.

In October 2019, he underwent yet another PET scan. There was substantial disease regression. We continued with chemotherapy and targeted therapy. After 10 months of dejection, my family was cheerful again. It was not the beginning of the end after all. My father had never been despondent, but now he shone in triumph. He took over life with a new vigor. Unfortunately, between October and December 2019, he lost three of his friends to cancer. At their funerals, he stared at their families in hollow silence.

In a span of 18 months, we had seen two disease progressions. Each time the targeted therapy worked on the existing tumor, but neither chemotherapy nor targeted therapy could stop disease progressions. In January 2020, my father was due for another CT scan. Given his history of disease progressions, I was scared to even look at his reports. However, there was further disease regression. We were relieved but still sought reassurance. Hence, I came back to TMH to get my father's scan thoroughly reviewed by the senior oncologist, only to be informed that everything was fine. My father was holding good.

In January 2020, my parents went on a pilgrimage to Velankanni in Tamil Nadu, to thank Our Lady of Good Health for all her blessings. On their way back, my father started feeling a pain in his left leg. Two days later, he had trouble balancing himself while standing and walking. In February, we consulted with the same orthopedic surgeon who led us to the diagnosis back in June 2018. He prescribed an MRI of the brain and spine. Mid-MRI, the radiologist informed me of two tumors in my father's brain and asked for my consent for further testing. The problem with my father's gait was caused by the two brain tumors. He was now prescribed ten rounds of whole-brain radiation. He finished 10 days of radiation and was advised to undergo another PET scan in 15 days. The pain in my father's leg increased every day. In February 2020, my father spent a whole week awake through the nights, writhing in pain. On 11th February, he was finally prescribed tramadol and acetaminophen to help numb the pain. The painkiller had a sedative effect and my father could barely speak. He noted the 11th of February 2020, to be his first day of being dependent on someone to be driven around.

In this endless journey of cancer, my father never once complained about the agony of his persistent cough, the chemotherapy, the drug leaking through his veins and burning through his skin, of having to live with a permanent chemo port implant in his chest, or the neuropathy compromising his sense of touch. However, after taking tramadol for about seven days, he wept inconsolably as the stupor made him feel useless. I took him back for a change in prescription; the doctor prescribed etoricoxib and warned that it may not provide pain relief to the same extent. The doctor was right; there was little relief from pain, and it was temporary. However, my father could manage to work a little, take a walk in his garden, or tell a story to my daughter. I could see the agony on his face when he dragged his foot while walking or changed his position. I begged him to go back to tramadol, but he refused saying, “I am not asking for a long life or for cancer to go away, but while I am alive, let me make it worth the while.”

About the patient:

The author's father will turn 62 years old in May 2020. He is an Engineer and a Management graduate and has worked in Quality Assurance and Certification for Bureau Veritas, Reliance Industries, and Germanischer Lloyd. Currently, he is the Director of Marketing at Guardwel Industries Pvt. Ltd, with no intention to retire. In his spare time, he enjoys traveling and gardening. He resides at his family home in Virar, Mumbai.

About the writer:

Ms. Jonita Main is 30 years old. She is an anthropologist and a law graduate and has worked for both National and International Nonprofit Organizations. Up until 2019, she was employed as the CEO's Assistant for Social Audits and Human Rights Assessments at Ambuja Cement Foundation. She is currently engaged in caregiving for her father, aged grandparents and young daughter. She resides at Goregaon, Mumbai.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.






 

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