In 2012, Kusum Tomar, 29 at the time, was an assistant professor with a 3-year-old son, Suryansh. Not a smoker or user of tobacco in any form, she and her family were shell-shocked when she was diagnosed with stage-4 lung cancer that had already spread to the brain.
“We had just moved to Gurgaon in March that year and were shopping for furniture, when my wife felt a twitching in her face,” says her husband, Vivek. Over the next month or so she suffered from excruciating headaches and her neurologist diagnosed it as a brain disease. Not satisfied with the diagnosis, the couple did the rounds of several hospitals, when an MRI the following month revealed nodules in Kusum’s brain.When the doctors went through earlier medical records, an old X-ray revealed patches in her lungs. She was diagnosed with last-stage cancer and given six months to live.
Grappling with the news
“When we first heard the news, we cried and cried together,” says Kusum. “But I decided that we would not cry when we spoke to our parents.” When both sets of parents first heard, they broke down. “I told them to cry as much as they needed to that night, but from the next morning, we were all going to fight this with a smile,” says Kusum.
She began chemotherapy and radiation, but nothing worked. They heard about a trial drug approved in the US and managed to bring it to India. Though Kusum had to give up her job because of the side effects (weakness, nausea), she could walk, go shopping, cook, says Vivek. “It was so much better than chemotherapy,” he says.
The couple had left Suryansh in Rohtak with his grandparents for the first couple of years and he had started school there. “Whenever he heard I was in hospital, he thought I would bring a baby brother home,” says Kusum. They would try to attend all his school functions and be present for important occasions.
Warring on
“By 2013-14, we had begun telling Kusum’s story of survival more publicly,” says Vivek. Slowly, by the time he was in Class II, Suryansh began to realise that his mother was suffering from a critical illness. “So, we decided to tell him, rather than let him find out from other sources,” says Kusum. Suryansh, a chip off the old block, dealt with the news bravely and has been by his mother’s side since.
By September 2014, however, Kusum’s body developed resistance to the trial drug. “We had already taken loans, sold property,” says Vivek. “We couldn’t afford going abroad for treatment.” The doctors told him to take Kusum home as there was nothing more to be done.
Unwilling to give up on his ailing young wife, Vivek quit his job and began writing emails and pursuing pharma companies, government officials, NGOs and doctors abroad. They had learnt about another drug from the US that was not in India yet. Then, they managed to get passes to a conference for for oncologists. During a Q&A session, Kusum stood up and made an emotional plea to those gathered there. She had been given only two months to live. The company got into direct talks with the couple, along with government officials and doctors.
The trial received approval and on January 1, 2015, Kusum became the first recipient of the first dose of the trial medication. “By April 2015, there was a reduction in the cancer in both the lungs and the brain,” says Vivek. However, by October 2016, Kusum’s body once again began developing resistance to the drug and there was a progression of the cancer in the brain. This time again, they appealed for a drug to be brought in from abroad. She became the first recipient of the medication in India on January 30, 2017. “She is mentally and physically back,” says Vivek.
Hope always
“I have seen a lot of friends with cancer lose hope and consequently, their lives, over the years,” says Kusum. “I realised that I could not survive on hope alone, so have begun to build on my body’s strength and stamina.” Kusum gets up at 5.20 am, Monday through Friday, and goes to an aerobics-Zumba class between 5-7 am. “I only give it a miss if I have been unwell the previous night,” she says. “I have begun doing household chores too.” To top it all, she recently participated in the Pinkathon.
Kusum suffers from the very rare ALK positive lung cancer, which only 4-5% lung cancer patients have, and is one of the longest survivors of this type of cancer. She is part of a closed international FB group for such patients, and constantly shares her experiences and motivates others in the group. She writes on Twitter, has recently started a blog, and the group Rise to Survive (risetosurvivecancer.com). “If I can motivate just two people and even one survives, I’ll feel my life has been a success,” she says.
She knows that sometime in the future, she may not be around for her son. “I talk to him and motivate him all the time. I am hoping to leave these conversations with him, so that he always feels my presence,” says the indomitable Kusum.
