Life goes on
One of us – Amongst us | As told to Viji Venkatesh, November 2007
Eight years ago, in 1999 my life was moving ahead like any normal middle class householder's life would in a busy metro in India. An ordinary but fulfilling existence with my wife of nine years, our young son and a job with good prospects seemed to be all one needed . Ours was a traditional family set up with all the expected and most times welcome interventions from our respective parents who we cared for and respected. The first symptoms of some kind of upset in this routine but comfortable existence started to appear in June of that year when I realised I was losing weight on a sustained basis and also felt an unaccustomed and excessive fatigue creep into my so far fairly healthy body.
It took a few weeks for me to rouse myself into going in for some routine investigations like blood tests to begin with. These showed significant increases in my WBC which in itself was indicative of a more serious condition and by the end of August all fears were validated when after a most painful and stressful bone marrow cytology test the haemotologist confirmed a diagnosis of Chronic Myeloid Luekemia. At this point in time I was based in what was then Calcutta where the treating doctors painted a very dismal picture indeed of the shape of things to come. They managed to convince my already nervous family that the ailment was lethal and it was virtually the beginning of the end.
I decided to pursue my treatment at the Christian Medical College in Vellore. I wanted to meet Dr Mammen Chandy there as he was renowned in this field. I must confess he was very reassuring and could somewhat , even to a large extent I should say mitigate the fear that had been spawned after our meetings with the doctors in Calcutta.
It was three months now since the diagnosis and Dr Mammen put me on Hydroxyurea which though brought about significant reductions in WBC levels left me with host of severe side effects like acute pain , increase in uric acid levels and other very uncomfortable disorders.
As Dr Mammen indicated the treatment protocol was to be a prolonged one and would necessitate frequent follow up visits. I envisaged great discomfort and logistic problems here living as I was in Calcutta . I requested my company to consider posting me in the Southern part of the country and they were kind enough to send me to Bangalore just a few hours drive away from Vellore. This was an unexpected blessing and a kind gesture from my employers.
I was not lucky to have the same consideration from closer to home ; on my family front . In the aftermath of the disease Blood Cancer being detected there was another crisis brewing in the most unexpected of quarters.
My little, so far happy family, my wife of nine years and my eight year old son had been a great source of mental strength for me . I knew that with them by my side I would have great motivation to fight this through. I had so much to live for, to work towards creating a good life of togetherness for ourselves. But I found my wife suddenly begin to feel very insecure and unsure of the future. To a large extent I still feel it was because of the bleak picture presented by the doctors in Calcutta and the frightening prognosis. I found it difficult to make her see anything positive at all.
Three months into my treatment my wife started behaving very erratically and by the end of the year decided to desert me. Taking our eight year old son with her she moved in with her parents. They eventually decided to seek for separation which would culminate in a divorce. This seemed to them a better option than her continuing to live with me ; a divorce which is even considered a social stigma in the conservative background we come from seemed to be more acceptable than life with a doomed man. The rationale perhaps was that it made better sense to desert a sinking ship.
The year 2000 saw me battling the disease and its side effects almost single handedly and that too in a new , unfamiliar place. I had immense regrets having moved now to Bnagalore where I had few friends and now no family either. Moreover my wife's family began pressing in earnest for a speedy divorce. What was more difficult to bear was the slander campaign going on in public to justify the seeking of the divorce.
Somehow that traumatic year passed ; I think I understood the pressures on my wife from her family and acceded to the divorce proposal and a petition for separation by mutual consent was accepted and thereafter granted by the courts. My only hurt, once I had come to terms with my wife's desire to leave me was when the court's directive granting me visiting rights with my son was not upheld by my wife's family. My son was to spend 50% of his holidays with me but I was denied that precious pleasure also. By now I was too traumatized and did not have it in me to embark on another legal battle or fight anyone anymore. There was another war being waged in my body.
By the year 2000 I had begun visiting the Tata Memorial Hospital so that I could benefit from a second opinion. Due to increased side effects and abated response to Hydroxyurea my doctor in TMF put me on Interferon. This came with its own baggage of woes and my battle worn body began to suffer from the frightful , ravaging side effects of Interferon. These wounds were more severe than those inflicted by Hydroxyurea and the artillery was changed to a combination of the two.
By now Glivec was available but its prohibitive cost was a deterrent. My company could not afford to support me and at this juncture the donation programme put in place by Novartis and The Max Foundationcame to my help a blessing in disguise.
My physician applied on my behalf and in May 2003 I was accepted into GIPAP. The counts became normal only after getting onto therapy with Glivec. Side effects were significantly reduced and my general health became much better. One major ill effect inflicted by CML on me has been a kind of photosensitivity effect in my skin and decreased resistance power to heat. This has persisted through all the therapy I have received so far.
It has been four years now since I have been on Glivec I was transferred finally from Bangalore and work now in Madhya Pradesh , life goes on and things seem generally fine . I am on my own and there is stability on the CML front. Periodic visits to see my doctor in Mumbai means meetings with The Max Foundation family too. Minor aberrations have been taken care of by increase in the dosage of Glivec. I had started on 400mg which was increased to 600mg after two years which was further increased to 800mg after another year.
Life goes on .