The Awakening

PNI – Thane, October 2007

I am employed in a multi-national company. My family comprises of my wife who is a full time homemaker and two lovely kids. My son is studying in his First Year of Junior College and my daughter is studying in the fifth standard. Till December 2006 we were happily leading an uneventful life. A friend of ours had just qualified as an insurance agent and I was one of her early clients for an insurance policy. For the amount insured, a medical check-up was mandatory. A lab accredited by the insurance company took samples of my blood for an array of tests. I visited the doctor two days after giving blood, for a medical check-up. After the ECG and general check-up, he called for my blood reports. On seeing my report, the doctor appeared disturbed and instructed his staff to repeat the blood tests. When I insisted, the doctor disclosed the reason for his concern; my White Blood Ccount. According to him, with a WBC count of 30,000, I should be running high temperature. I appeared to be perfectly normal and had no symptoms except for a residual cough from my recent upper respiratory tract infection. The repeated blood tests
yielded similar results. I was advised to consult my physician.

My family physician prescribed a course of strong antibiotics. Soon after completing the antibiotic course, the tests were repeated, but the WBC counts had further increased. I immediately repeated the tests at another reputed lab. By now the count had risen to 42,000. The alarm had been triggered. In disbelief, I again repeated the CBC at yet another lab of repute. Within minutes of giving blood, I received a call from the lab with a flood of queries on the reasons for the CBC test. The lab refused to disclose the report or the reasons for their queries. I immediately approached my company’s Medical office, who suggested an immediate visit to a Haematologist. Fortunately the company doctor could confirm an appointment for the same day with Dr. M. B. Agarwal. In the meantime, the pathological lab called to inform that my blood report could be collected from the Chief Pathologist. The WBC count had now risen to 65,000. The chief pathologist at the lab handed me the report with the advice that I should take my report seriously and see a Haematologist, immediately. Other than my wife, my brother-in law followed the developments of my CBC counts closely. I learnt from my wife that he was scouting the internet late into the night, for possible conditions leading to the high WBC count. He was losing considerable sleep over my condition and I took that as a clue that I was in serious trouble.

After going through my case, on 27th Dec ’06 Dr. Agarwal informed us that he would get my bone marrow tested. A vial of the bone marrow was also handed to us for a test called the bcr-abl test at Jaslok Hospital. We were asked to visit the clinic for the report on the diagnosis. The period between 28th Dec’06 and 1st Jan’07 seemed like ages. My wife and I did not rule out any possibilities regarding the diagnosis. Finally the day arrived; mentally we were prepared for any eventuality and braced ourselves for the verdict.

While we waited in Dr. Agarwal’s clinic for the report, the junior doctor handed-over my report file to me. The act subdued our fears. The fact that we had been handed the report, before meeting the doctor, could mean that the reports were nothing to worry about. We promptly thumbed through the report and then the shock sank in.

I was diagnosed with Chronic Myeloid Leukaemia (CML).

For a moment there was darkness in front of our eyes. My first concern was for my wife and our two young kids. Our mental preparation helped us retain our composure. Soon, we were ushered into the Doctor’s consulting room. He informed us of the bad news and the good news. The bad news was that I was suffering from CML, which cannot be cured, and the good news was that it could be treated and kept in control and that I would be able to lead a normal life, as before. He briefed us about the various treatment options  which included the drug Glivec and he also told us about The Max Foundation (TMF). He informed us that he had already sent a request to The Max Foundation (TMF) for enrolling me on Novartis’ Glivec donation program. Dr. Agarwal put us at complete ease by clearly explaining the stage of the disease. The prognosis was good. He also spoke to my brother-in-law over the phone, to quell his fears and to reassure him that my condition was manageable and that it was not life-threatening. That day my wife and I had a sound sleep after many days. The Bcr-abl report from Jaslok Hospital on 3rd Jan’07 confirmed Dr. Agarwal’s diagnosis. Without delay, we visited TMF office as guided by Dr. Agarwal. The reception at The Max Foundation was over-whelming. The care, concern and support that we received cannot be described. The fact that I had my first three month quota of Glivec on the 5th of Jan’07, speaks of the concern and care of the angels at TMF, under the inspiration of Ms. Viji Venkatesh (Amma).

Glivec lets us live a normal life with dignity.
The more we interacted with TMF, the more we were awe-struck by the service they provided to CML patients like us, and our families. Inspired by our experience at TMF, I joined the group of volunteers “Friends of Max” (FOM). In the first month itself we had a Volunteer Training Programme where I met  other FOM. The group comprised of a lively lot of CML patients, their friends and family members, TMF team and also members who chose to contribute selflessly to make a difference to the CML patients. These  interactions were enriching. I learnt of unglorified and untold accounts of struggles and victories. There were people like me who were diagnosed with CML, a few days ago to people who had CML since 17 years.Only when you hear the firsthand account of people who had undergone treatment options such as interferon and Hydrea that you realize the difference Glivec has made to the CML patients. It is not without reason that Glivec is referred by CML patients as the magic bullet, because, it is the only cancer drug  which is not toxic like chemotherapy; it only acts on targeted cells and has no major side-effects. By the time I went for my second monthly check-up, my WBC counts were at a normal 4,500. The CML was already in haematological remission. The bcr-abl test after three months on Glivec showed only 17% cells as positive, (which is around 10% in case of normal humans) as against my bcr-abl report, at the time of diagnosis, which showed 100% cells to be positive.

I lead a perfectly normal life now, but my life is changed. We never realized that there were angels around us, until we met Dr. M. B. Agarwal, Viji (Amma), Ayesha, Sharon, both the Ashoks at TMF and many more people whom we have heard of and would love to meet, such as Pat (Max’s mother) and the dedicated team of TMF across the world, and of course Novartis, who invented the drug and whose magnanimity drives the Glivec International Patient Assistance Program, which has given a whole new meaning to our lives. All these angels make a difference to people diagnosed with CML and give an altogether a new meaning to our lives. We are now part of a larger family. We meet often without any selfish motives. We meet to share our experiences and joys and to celebrate life. We meet to celebrate the awakening.