And Then One Fine Day It Happened to Me
Someone – Somewhere, 2007
Ups and downs
In the year 2001 I suddenly realized that I had become overweight and was determined to do something about it. However, nothing seemed to happen. In May 2001, inspired by my father, I started going for an early morning walk. Slowly by August 2001, I lost more than 8 kilos. I was very happy, assuming that my efforts were paying off. At that point of time, I started suffering from stomach upsets very often. So I went to my family doctor for a check up. While examining my stomach, he told me that my spleen was swollen. He asked me if I had malaria or some other disease in the recent past. I told him that I had none of them. Then he asked me to undertake a CBC check and sonography for the abdomen. During this period, I was a bit weak and was at home, which is not abnormal for anyone with stomach upsets. I completed the tests and my father went to collect the report. The report showed the WBC as 3.5 L. As this was scary, he again verified the test result with the doctor. The doctor said that since it was a rare result, he had confirmed it twice and asked him to take me to a haemotologist.
The first question was – Why Me?
An appointment was taken and I was asked to perform a bone marrow biopsy and other tests. These confirmed that I had CML. Everyone at home was shattered. We did not know what to do. I asked myself if I had been bad in my life or past life. Or had I done many bad deeds? All sorts of negative thoughts troubled me. However, we decided to go ahead with the doctor's advice and directions. My parents and husband also agreed with me that we would not disclose the disease to anyone else, as I did not want any pity. Nor did I want people to look down on me as a cancer patient and show sympathy towards me. So for all outsiders everything looked normal. To me the rosy picture of a happy family looked bleak. My husband and I had high profile MNC jobs and we had a cute daughter. So this made me wonder whether an evil eye had caused this.
I was told by my doctor that the disease is one of the best cancers.
CML progresses slowly and one can live for many years without serious problems. This meant that I would not die soon. Since I had CML chronic phase I would continue like this for many years maybe 10 or more. So that was a sigh of relief. Maybe I had 10 more years to live. I began calculating how many years I had as my daughter was just 5 then. For the first time my thought process was about wanting to live for very long. At least another 20 years ahead. I was prescribed Hydrea and was asked to take rest. For me taking leave from work was very rare, even when I was sick. After my delivery too I had started working within 2.5 months. This period seemed to be a long forced leave. My colleagues were surprised that I was sick and did not attend office. Thus, they started asking me all sorts of questions, such as “What Happened?” However, since I did not want to tell anyone the truth I had to make it up with some story like I had a blood defect and that I would get better soon etc. In any event, I joined back soon, within 15 days. Slowly I could see my hands turning dark. It was the side effect of the drug Hydrea.
Later after about 2 months, we heard of the wonder drug called Glivec.
I happened to see the Annual report of Novartis and learned about it. I approached Novartis for the same. I almost fainted on hearing the price of Glivec as Rs. one lakh twenty thousand. Oh, I could never afford it, because I would have to purchase it not just for a couple of months, but life-long. This meant that I would need financial help. GIPAP and the Max Foundation India did not exist then. Glivec was not available in India, so the only way to obtain it was to import it. We managed that for 8 months and by then we had spent all our savings. Meanwhile, through Vivek of Novartis we heard that Max Foundation was being setup in India, then with only Viji's presence. However, since I was not on Interferon and had not failed that drug, I could not be part of the GIPAP program. So my husband took up a job in the Gulf to fund my treatment. He actually quit a very good job just to support me. My daughter and I were in India as I also needed to continue working and my husband went abroad. This was the only way we could fund my treatment. My daughter who was 6 then, did not understand the gravity of the problem and used to cry many a times for her father. She prayed that he would come back to Mumbai. God heard her prayers because my husband suddenly lost his job and came back to Mumbai. But we were in a dilemma and did not know what to do. So then I was put
on Interferon for some time to check the result. However Interferon did not suit me at all. A drug not suiting a patient is normally not a good sign but in this case, it was a blessing in disguise. We learned that we were now eligible to be a part of GIPAP program. This way we were relieved of our financial worries, the worries of being a disintegrated family and we were assured of a better drug for my disease. Since then I continue to do well with Glivec and have braved all other side-effects of the drug which are irrelevant as compared to the complexity of other issues. Now we are all together and a happy family again.
All's well that ends well
I am very thankful to my doctor, Novartis and Max foundation and in particular Viji for making it happen. They have given me a new dimension to life, new friends and relations and of course lots of happy moments which I shall cherish for a very long time.