A Milestone that’s really etched in Stone – Part 5

Ravi was only 24 years old when he was diagnosed in 2001 with Chronic Myeloid Leukemia. Yes, 25 years ago. He had just found the job of his dreams and begun working with great enthusiasm, looking ahead to a future filled with hope and great opportunities.

Sitting opposite the HR Manager of the company he wanted to join, feeling a little nervous yet hoping the job would be his, he was surprised by the question he was put close to the end of the interview, “What’s your lucky number, young man?” He was asked.

“Sir, it might be 30 seeing I was born on 30th November ? “

What the HR Manager said next made Ravi the happiest man on earth that day.

“ No, it is 4 I believe. Because your address says House No 44 and you have to report here to work on 04/04/2001”

Ravi shares in his own words those heady days when he was offered the job and what followed.

“That was my first job and I started my career as a Trainee Engineer in Bangalore. I was very excited because I got a job in my own domain of experience and interest whereas all my friends were pursuing a career in IT.

My work involved many site visits and field duty in and around the city of Bangalore.

This meant I had to travel by bus and also walk a lot. In fact, my daily routine involved a lot of travel both by public transport and on foot, I would walk an average of 5-8kms daily. Gradually, I began experiencing severe pain in my legs accompanied by some swelling. I, of course initially thought it was because of my physical exertions due to all the travel. It was now four months into my job and instead of my body getting used to the walking, the pain and swelling only increased in severity. Not only that, I was also very worried by the accompanying red rashes. Something else that developed was frequent fever attacks that left me weak and troubled. A friend recommended I see a dermatologist who diagnosed my condition as rheumatoid arthritis. He put me on some medication and also advised a blood test.

For some reason, though I took the medicine prescribed I never went to collect the reports and didn’t go for the review which was scheduled after five days. I felt taking the medication was enough and simply avoided the rest. I owe it to my friend who is a medical representative by profession. He advised me to be sensible and not neglect my self. He took me to the doctor after ensuring I had collected the test report.

During the consultation I realised that all was not well because initially the doctor, after asking me to wait outside, had some discussions with my friend alone.

I was called in and the doctor was continuously asking how many siblings I have and I was unable to understand exactly what the issue was. What was the blood report all about, I kept thinking because now my friend was consoling me and I was not understanding anything.

I was told I had to see a specialist at the Kidwai Institute of Oncology for a Bone Marrow Transplant (BMT).

I was totally in a confused and frightened state of mind. I didn’t understand anything and there was no easy access to the internet at that time too. I had to ask my father to come to Bangalore who came immediately and I underwent some more tests for reconfirming the diagnosis.

 The words Chronic Myeloid Leukemia leapt out at me . I knew what Leukemia was !  I recollected a story I presented in my school days of Sadaco Sasaki a little Japanese girl, who was a victim of the after effects of the Atom Bomb  in Hiroshima, Japan. The world around me became so dark and I was worried about my father who was in his late fifties then. I wondered how he would absorb this shock. To protect him I simply pretended I was this very cool and very confident person but actually I was myself in deep shock.

Things began changing when we eventually met the oncologist at Kidwai Institute. He explained the treatment options to us which was the standard protocol those days for CML.

Hydera, Interferon and the most expensive and frightening Bone Marrow Transplant (BMT) which at that time was the only known cure for this fatal cancer.

I remember that he also mentioned something. About a new drug only to stop by saying access to it was unthinkable and it was still in initial stages of development.

 After the four lucky months I had to quit my job and was taken to my hometown. I was heartbroken and afraid for my future. Back in Kerala my treatment continued at the Government Medical College, Kozhikode. I was lucky to get Dr. Narayanan Kutty Warrier as my oncologist, who explained to me all about the treatment options and started me on Inferferon along with Hydera. Everything was uncertain and somehow the days passed. Sometime in August 2001 there was a ray of hope when my doctor spoke to me about a new drug which was launched in the US which had been named The Magic Bullet and under his guidance we began the formalities to get it here in India. The process to get a drug imported from the US was not easy at all in those days and it required a lot of approvals and licenses to be procured from various government agencies. My father was lucky to get help and guidance from a friend and colleague who was an IPS Officer.

Finally everything was cleared and I was about to get the consignment but then the tragic  9/11 attack in the US delayed everything and there was uncertainty. Finally on 31 October 2001 ( lucky 4?) I got the consignment in my hands.

 After the Magic Bullet 400mg my life became easy. I slowly gained weight and a symbol of survival, hope and a sense of positivity prevailed. I was able to go outside after months of confinement to home and gradually everything was getting back to normal.

But the cost of the medicine was a concern ; it was Rs 1.25 lakhs per month. A few months later it was available in India but because of its very high cost, it was of no use. My father too had retired from service and the future looked very bleak and difficult.

I went back to Bangalore in search of a job but it was very difficult to find good employment back then in those days. Life became very difficult and my future was a big question mark.

 Then one day my father called with some news which was a glimmer of hope and I held on to that . He told me that there was talk about a program through which CML patients could get the medicine at no cost.

“One Madam will call you tomorrow, I have shared your number with her. I was shocked thinking will miracles repeat themselves? First as the magic bullet and…now…now I’m getting it  for free?? I simply couldn’t believe it.

Next day I got a call from that Madam. I was in the midst of attending job interviews and very nervously  picked the call from an unknown number. “Hello, I’m Viji Venkatesh from The Max Foundation”  and that voice from the other side made me very comfortable as that ” Ma’am” enquired about my health, my medication and about my doctor. She then asked me to contact my doctor who would have to apply on my behalf and I needed to send a few documents. Within few days, all formalities were completed and till today , for the last 22 years the miracle is continuing…..

Few months later a Friends of Max meeting was conducted at Kozhikode and there I met Amma. (Viji Ma’am) for the first time. I was also privileged to meet Pat the founder of Max Foundation at a Friends of Max All India Meeting in Kochi.

CML has given me one more Amma in Viji Ma’am, ( my mother’s name is also Vijayalakshmi). Glivec transformed my life and I was privileged to have friends everywhere in India and the globe. It is like, I’m part of a big family without any boundaries now.

Few years later God sent a wonderful person into my life, my better half whose role model is Viji Amma. She keeps herself updated about the activities of FOM and then we had our little Arjun after a year.

Now in the 25th year of CML and Glivec, I think back with wonder about the initial days of diagnosis, where everyday was treated as a bonus, an addition to a peaceful life and hoping for miracles.

Today with the support of Max and Friends of Max and the wonderful people around me, I’m confident enough to share my story and motivate others.

Together we are all  looking forward for another milestone in the treatment and cure of CML for the benefit of millions …