Amitabh Iyer – Mumbai, October 2006
All stories must be told from the start, but mine is not a very normal story. I am 31 today, live in Bombay (yes, we still call the city by that name), work in an investment bank, am happily married, with friends and family to boot. In toto, mine is a copybook life, nothing much to point fingers at.
The exciting part of stories is that, they usually don't remain consistent throughout their narrative. Well, neither was mine…
Lets rewind 8 and a half years. I was 23, had been abroad for a few months (Aug 98), living in a cold part of the world, I started having internal clotting and bleeding. In a cold country, that can very easily pass as 'frost bite' especially for someone like me who has lived all his life within tropical aisles.
I ignored this completely, except for the fact that it did cause inordinate pain and discomfort. I returned home in Oct 98, felt much better for about 2 months….but the peace was shortlived…in Dec 98 the clotting started again, visible large patches under the layer of my skin.
I went in for a normal check up with my family doctor, who asked me to do a few tests…and initially classified it as ITP (Idiopathic Thrombosis)… and the prognosis being that I need to be doping myself with a self administered injection for the rest of my life.
As the results of the other tests started trickling in, it became quite clear that there was more to it, than the initial prognosis.
A frustrating period ensued, during which my dad (who had just retired) and my mom were aware that something taboo had happened to their son, while I was quite abstracted from what was actually happening. My elder brother who lived abroad at that point, flew down quite suddenly…and it seemed like too much happening too soon, and yet I did not know what was happening.
I remember the day, 23rd Jan 1999, on a long walk with my brother, he told me what was possibly wrong with me. I distinctly remember that I was chilled, not shocked, more interested in knowing how having this illness impacted me.
In the initial days we went to a few doctors who inspite of their noble profession were as crude as life can pull you down to…..My family has faced a lot of shock in the initial days, with no doctor even coming close to providing emotional support….There were doctors who advised I should do a BMT (though my brother's samples did not match mine), or others who told me that I must quit my job and stay put at home.
My boss at that time, a great friend of mine even today, by the name of Maninder Singh, advised me to go to Dr. Agarwal. I still think that is one of the best decisions I ever made. The second best decision I made was to continue living as if I was just normal. Till today, I don't stop myself from doing a single thing which I would have not done, had this disease not happened…..For example, I still work 50-60 hours a week, exercise hard, eat street food, booze on social occasions, stay out late to watch movies……in short I do everything that I might be advised against doing… Live life fully.
To lend some more flesh to the narrative, I started with Hydrea, and continued it till Sep 2002, leading to hair loss, weight loss, and everything else that one associated with chemo. In 2000, I started taking 9-11mg of Interferon per week… and more than the debility associated with the medicine, my family and I were almost financially broke…
Around start of 2002, we heard about the launch of Glivec, and my dad in a burst of enthusiasm, wrote in to Dan Vasella, explaining to him that we were almost broke, and could we still get Glivec at a subsidized price…
My parents have been through possibly the worst times of their lives and I must say quite stoically. They finally had something to look forward to…
Novartis send this letter (internally) to Max Foundation.
In July 2002, I changed my job to one that paid me slightly better ( kind of relieving our financial stress a bit), in Aug 2002, I married my childhood sweetheart, who knew my problems from the day they had appeared, had stood by with me, and decided that she could not wait any longer. She (my wife) is the most perfect example of what unconditional love can be….I am now married to her for 4 years, and even today she puts up with my difficult idiosyncrasies…
When we married she knew, she was marrying a pauper, a person with a taboo disease… and yet she did. What did she get? I really don't know even today.
What did I get? Unconditional love and more. In Sep 2002, 15 days after my marriage, I heard someone called Viji had approved my entry into the GIPAP programme.
Its been 4 long years now… I am financially much better off, Viji is no longer Viji, but is 'Vijiamma' for me, I think she is more than a mother to me, she officially claims to be my godmother ;-). Ayeshah and Doctor Pallavi remain the proverbial sister (little one and elder one)
Did Max Foundation give me Glivec? No, that's not all. It gave me something much more, a sense of life, a sense of belonging, a love that was just as unconditional as my sweetheart's.
If you ask me honestly, I never want to die, I love life… I want to kiss it, touch it, dance with it… with an extended family like FOM, maybe the journey is quite a bit more rewarding.
In toto, do I grudge CML? No, not at all. I am glad it happened. Maybe it just made my narrative for this story much more colorful… and if just for that, it was still worth it.
CML is dead, long live CML.