Param was 36 when he was diagnosed with chronic myeloid leukemia, but he never lost hope. A chemical engineer in India, he has since become an inspirational advocate for others struggling with cancer.
In 2004 I was progressing in my career at a multinational company. I had no symptoms, but since I work in pharmaceuticals, had to have an annual medical checkup, which found high white blood cell counts. I was making a presentation to company stakeholders when the company doctor called to tell me that I had chronic myeloid leukemia (CML).
But my mind didn’t have cancer, my soul didn’t have cancer, my blood did. I had a family to look after—two young daughters—and I needed to be here for them. I didn’t lose hope or faith, never asked “why me,” never sulked. Life is beautiful; every setback leads to a stepping stone.
But my wife was shattered by the news; blood cancer leads to death, and she thought that I would die. It was a tough first night, but the next morning she said, “we are going to fight this together,” and the journey started.
I was lucky it was CML. Novartis had a medicine available that worked for 95-98% of patients and provided a good quality of life for the almost 20 years it had been around. It’s was like taking a pill to control diabetes. It acts on your melatonin, so you become fair skinned, but it has no other side effects.
What Next?
I started taking it and life was good. I felt inspired to advocate for others. I’ve become a hard-core volunteer with The Max Foundation, an organization that supports people with CML. I’m a very positive person and I create positive energy for others. I am an extrovert, a provocateur, and advocate who talks to people about living with cancer.
My career really accelerated after my diagnosis. I was taking a very disciplined approach to my cancer, taking the medication as instructed, going for monthly testing, and for regular molecular tests. Then I was nominated for a university program in the UK and went there for six months. While I was there, I continued to get tested. But, my hemoglobin levels were going down and I was becoming tired. A doctor there suggested it was a side effect of the chemo drugs and that I need an iron supplement.
Back in Bangalore in the fall of 2006, I did the blood test again with my regular doctor, which showed my CML had progressed from chronic to an accelerated stage. It was still manageable, but I worried about further progression to blast stage, at which point it becomes acute. I had further testing and this time they said it was at the blast stage. Three to five percent of patients develop resistance to the Glivec chemotherapy and I was one of them. I was devastated, “what next?” I thought.
My medical team offered to put me on a new medication, to try and get me back to the chronic stage, but it would cost $1 million a year. The other option was a bone marrow transplant. My brother was a 100% match, so we decided to do that.
The Seed of Growth
It wasn’t easy; they hit you with a high dose of chemo to wipe out the immune system, which can lead to death. I thanked my cells for taking care of me for 35 years, kept photos of my family on the walls of my room, and mindfully focused on life. When my brother’s bone marrow came, I said thank you and told his cells to get to work. His bone marrow took over completely in 15 days. And the strange thing was, my blood type changed to his blood type too. I used to be B negative, but after the bone marrow transplant, I was B positive.
I was in the hospital for over a month and out of work for three. I never feared for life, I always had hope. I have always been resilient; it’s part of my upbringing. Adversity is the seed for many things, and now it’s like nothing ever happened. I’m off all medication and the molecular test for CML shows zero. The doctor says I am like any other healthy person now. I went back to the UK in 2007 to complete my degree and we got on with life.
My wife was shattered when we learned the medication had failed, and would cry when she wasn’t with me. She worried about the bone marrow transplant and feared I might die. But she smiled when she was with me, so I got her positive energy. The hardest part was with my girls. They were 11 and 9 when I had the transplant and explaining to them what was going on was challenging. My elder daughter thought she had to help her grandparents run the family while Mom and Dad were away. Also, for two years I was the focus of attention—the children lost the attention— which was hard for them. I can now see some of their emotions around this; it was a price we paid.
With Fear You Lose Control
I strongly believe in the power of God. From my childhood, I go to temple, pray, follow a ritual—it gives you positive vibrations. On the tough days, that was my coping strategy. My advice to others is to take out the fear; if the fear kicks in, you lose control of everything. It is hard to be mindful when you are afraid.
Day to day I try not to focus on what my disease is doing. I would rather focus on what my life is doing and then find out where the disease fits inside that – otherwise you become preoccupied with just living to die rather than the other way.
I followed the doctor’s protocol and never Googled anything; you should ask your doctor if you have questions. I’m also very clean about eating and hygiene; people think they can start back to all their bad habits when their blood counts look good, but you have to manage life mindfully. Exercise, yoga, and meditation, can enhance your life. Mindfulness, looking within, and having faith and hope really helps a lot.
Hope and Faith
There is a difference between hope and faith. Hope goes hand in hand with faith, but without hope, faith cannot continue. The spark of faith is created in the subjective mind, based on thoughts, whereas hope rises from your spirit, a dogged will that is full of strength and courage.
My story is a stroke of luck: 70-80% medical, 20-30% luck and good vibes. Once you start creating those good vibes, it reflects elsewhere in your life. Ever since my diagnosis, I’ve never asked “why me,” instead I saw it as a warning, and thought that maybe I can help others get from fear to faith.
I believe in advocacy; I’ve seen and heard doctors, social workers, and families try to help patients. Doctors can only articulate how they deal with patients, but patients can communicate their own experience of survival. Some people don’t have the courage to fight, but we can make a difference. The first three letters of cancer are CAN: yes, we can. Is cancer going to take control of my life, or am I?