Vivek and Kusum
It was a sunny afternoon. Kusum had a long to-do-list for our new house in Gurgaon. She was excited, wanted to set up the house at the earliest so that we could call our son, Suryansh, to live with us.
Kusum and I had been married for four years, but our finances never allowed us to stay together. I took up a job in Hyderabad and Kusum joined as an associate professor in a pharmacy college in Rohtak. Our son lived with Kusum at her parents’ house.
One thing I love the most about my wife is that she wants to live every moment, while I always fret about the future. But now I wanted to live life her way, live every moment to the fullest.
One day we went to a neighbourhood furniture market, famous for affordable furniture. She settled for a brown couch and we were looking for a table to go with our sofa when Kusum felt some painful twitches on her right cheek. I sensed that something was wrong. My gut feeling told me that the twitches were not normal.
However, I didn't share my fears with Kusum and we came back home. We didn't buy anything that day. The next day, I took her to a multispecialty hospital a few kilometers away from our home.
The doctor, after a few tests, declared that Kusum was suffering from tuberculosis of the brain and immediately scribbled a long list of medicines on a paper and advised admission. Somehow, I was not shocked, I knew that the diagnosis would be complicated. "Is it curable? " was my only question to the doctor. And his affirmation gave me strength.
Kusum too didn't show me her nervousness. But I knew she was tense. Her dream of moving to a new house with me and our three-years-old son was postponed for a while.
It was midnight and we were lying on the either side of the bed, both awake, lost in thoughts. Suddenly, Kusum got up and sat next to me. She caressed my hair and asked me to sleep. I took her hand in mine. We didn't say a word.0
I knew that the diagnosis would be complicated. "Is it curable? " was my only question to the doctor. And his affirmation gave me strength
The life had suddenly taken a turn.
Her anti-tuberculosis drugs had enormous side-effects. She was in deep pain. She could not digest anything. The doctor told us that these were the expected side-effects of the anti-tuberculosis drugs. He asked her to eat something soft and nutritious at short intervals and to take plenty of fluids. We tried everything but nothing relieved her pain or discomfort.
Initially, it appeared that she was responding to the treatment ,but after 6 months when we went for a brain MRI, we came to know that the size and number of the brain nodules had increased.
Doctors reviewed all her reports and observed that the X- ray that was done on our first visit suggested a big lump in her left lung but they missed to see it.
Vivek and Kusum with their son Suryansh
This time, the diagnosis was even more devastating— what Kusum was actually suffering from was not tuberculosis, but a rare non-small cell lung cancer with ALK mutation. It is a very rare form of cancer that had already spread to her brain and formed multiple tumors there. It was a stage 4 cancer.
I was blank, couldn't think or act. She was hardly 28, and a non-smoker. How could she get lung cancer at this young age? What would happen to our 3-year-old son?
In a few seconds millions of questions crossed my mind, and a deep fear of losing my wife made me numb. I don't remember how much time I took to regain my senses when the doctor broke the news to us. I looked at her and she looked back into my eyes. She said, "Don't worry, everything will be all right."
She was determined to fight the deadly disease. And I desperately wanted her to win this battle. No matter how rare her cancer is, I was sure that there would be medicines to defeat it.
The doctor prescribed chemotherapy as a surgery was not possible at her stage of cancer. We read each and every thing available on the internet about the non-small cell lung cancer --- its survival rate, its treatment, what one should eat, what one should avoid. We didn't want to go wrong this time--- already six precious months were wasted as she underwent treatment for tuberculosis.
We went for the first cycle of chemotherapy with a lot of positivity. But nothing was working in our favour. In second month, after third cycle of chemotherapy, the drug reacted adversely.
She suddenly felt breathlessness and severe pain in her shoulder. I rushed her to the hospital emergency. A large amount of cancerous fluid got accumulated around her lungs and heart. Her heart could stop beating anytime due to fluid pressure. It took her many days to come out of the ICU. She showed resistance to chemotherapy--a rare occurrence.
The doctors suggested molecular therapy, which was available in the US. Kusum responded well to the new drug for 22 months before she developed resistance to it.
The second generation drug was available in the US, but we didn’t have any money to buy it. Her disease started progressing aggressively---it spread from the left lung to the right lung.
How could I let her die like this?
The drug was beyond my financial means. I didn't know what to do. We brought Suryansh, our son, home. I wanted him to spend as much time as possible with his mother.
I felt helpless for the first time in my life.
I met a lot of doctors, wrote letters to various pharmaceutical companies to know how this drug can be brought to India at a reduced price. They told me that a new drug can only be brought to India after it clears clinical trials. Though the pharmaceutical company that manufactured it had already applied for the permission for conducting clinical trials for the said drug in India, they were still waiting for the Drug Controller General of India's (DCGI) approval.
I wrote to the DCGI, pharma companies, doctors. I didn't know if they would respond to my request of sanctioning approval for conducting clinical trial in India. But they did. It took four months, the drug came to India under clinical trials and Kusum became their first patient.
She responded well to the new drug. The tumours in her brain shrunk. The cancer in the rest of the body was arrested, and there was improvement in her condition.
Kusum fought well with the side effects of the drugs which included nausea, vomiting, drowsiness and epileptic convulsions. She were to take this medicine in the morning but we didn't want to disclose the gravity of the disease to our son, so we consulted the doctor if she can take it in the evening instead.
Every evening at 7, she popped this pill before putting our son to sleep. By 10, her condition would worsen. By 3.30 she would sleep to get up again in the morning to send our son to school
Every evening at 7, she popped this pill before putting our son to sleep. By 10, her condition would worsen. By 3.30 she would sleep to get up again in the morning to send our son to school. She would greet him with a bright smile each morning as if nothing had happened.
And I often marvelled at her positivity and strength.
Such was her determination that when she started feeling weak, she asked me to buy her a bicycle. She said she needed it to build her stamina to withstand the effect of cancer and its treatment. She bought one pink colour bicycle the next day.
But Kusum has developed resistance to this drug as well. She now needs the next line of drugs but they are far from coming to India.
She can fight the side-effects of drugs and keep herself positive but how can she fight cancer without any drug?
It is not that there are no medicines available to treat her, there are so many advance medicines available in the USA, Europe and even in some developing countries and so many are in the pipeline. The life-expectancy of someone with her kind of cancer could be 10 years. How can our government not think of bringing these life saving drugs to India when all other countries have them?
I ask these questions everyday to myself and government officials. I am still waiting for an answer.