Manoj Panicker Mumbai 2010
At the outset, I would like to thank Viji Amma, Pat and the TMF team for the service they do to so many of us every day and every minute and with their every heartbeat. I call them my angels and consider myself blessed to be associated with TMF. At an individual level, I am sure they all know how endearing each one of them is to me and I hope to keep contributing to TMF activities to the best of my abilities. I must proceed to thank all the wonderful souls working for Novartis and who decided to initiate the GIPAP program despite patent setbacks in the Indian judiciary. Our numbers have grown every year and I am sure the costs borne by Novartis can perk up the annual results of many a company in the Fortune 100 list manifold. I am convinced that the executives at Novartis have some of the most generous hearts in the world. My best wishes to the company and prayers that the GIPAP program encourages similar actions by other entities to support such medical conditions.
Now for my story.
Viji Amma wanted it in 2008 but it is coming out only now. I have been a resident of Mumbai since my birth. I have enjoyed my childhood, teen years, and college life here. Like every one of us, I too had the usual dreams. Most of us rush to learn more each day and hurry to do things. There is an eternal race to look good everywhere and in everything we do and of course cherish happy moments with the family. Also to be “successful” in one’s career, in one’s social setup and have the financial freedom to enjoy some material pleasures. Then came a period when my father went through medical distress and his “never give up” attitude only served to strengthen the family resolve. But all that lives must pass away from this worldly life and thus my father went onward from this world to his heavenly existence. We, the family, went ahead with the traditional rituals in our home state of Kerala and returned to our regular routine in daily life. It was my period of grief and I must say that my company managed graciously. They let me get slack in my work schedule. Then a crucial project came along and I got involved in that. It was routine to spend 14-16 hours in the office, sometimes until 3 a.m. in the morning with no change in productivity. The project ended on July 23, 2007 followed by a presentation to the executive management on 24th July, 2007. I could feel the beginning of a viral fever episode. I decided to take the day off the next day as I had chest congestion symptoms and the typical fatigue one gets after the culmination of what resembled a battle. I have been an asthmatic for many years and the chest congestion reminded me of an asthma attack. I wondered why it had recurred after 4 years. My laboured breathing worsened further on June 25th 2007 and that night I faced the worst ever asthma attack and nothing gave me any comfort. I was drooling with intensely laboured breathing and started thinking negatively about the condition. My mother and sister were really stressed to see me so unwell and did a lot to comfort me. Soon I was on my first ever hospital visit and after the initial nebulisation procedure, my breathing eased and I felt much better. It was a local neighbourhood hospital with basic amenities which was good enough for an asthma attack. Through the next day, I improved vastly from the night before and as part of the procedures my blood samples were taken for testing. The doctor came for his morning rounds and prescribed medication and declared me fit enough for discharge the same evening.
The doctor then came for his afternoon rounds, saw the blood test reports, and asked me to get admitted to a better equipped hospital. Soon, I saw the result myself and the doctor called it a possible leukemic reaction. I saw my white blood cells were way above from the normal 10,000 up to 65,000. I decided to get admitted to Karuna Hospital in Borivali West, one run by the Mission Sisters of Ajmer, with the trappings of an institution that is run on the lines of strict policies.
When we reached the hospital, I was near normal and the young resident doctor was confused as he could not spot the patient. He had to be reassured that I was the one to be admitted. I chose the visiting doctor and today in retrospect, I am happy I chose the doctor I did.
It was then that I hinted to my sister about an increase in leucocytes being a bad indicator. I stopped short of telling her what it could be, for I have always been chided for knowing too much. Dr. Leeja Joseph came on her rounds around 11 p.m. and cheerfully enquired about my well being and prescribed the medicines to be administered to me. After about 3 days, I began to wonder why I was in the hospital despite feeling normal. Then Dr. Leeja referred me to a haematologist who explained why I was there and for the confirmation I would have to undergo a bone marrow test. It was getting closer to my suspicions now. After a painful round of marrow suction from my hips, I dropped into home on the way back to Karuna Hospital, for a nice home-made dinner and shared my escapade with Dr. Leeja for a good laugh. All against the rules of the hospital.
The results from the bone marrow test confirmed that I had CML
It was the Philadelphia positive chromosome. My sister was teary-eyed for it was all happening to me in the prime of my life, that too in our grievance period and my mother would have to absorb this additional shock in just over a month and a half of my father’s demise. I consoled my sister and proceeded to ask the doctor about the prognosis. What followed shocked us both and somehow steeled us to the situation. Maybe it was the inherited “never give up” attitude. We decided to release this information to my mother appropriately at an “opportune” moment. We went back to Karuna and only informed a close circle of people including a relative who was a gynaecologist by profession. Discussions veered around the medication, Imatinib, Glivec, bone marrow transplantation, quality of life etc.We told my mother about it and she was upset with the news. She was also hurt by the fact that I did not take her into confidence immediately. My mother comes across as a very strong personality and has always been my support for many events in life. I told my mother that in a way it was good that it came after Dad’s demise as he would have undergone much more distress had he known about my condition. I assured her that there was a line of treatment at a cost of Rs.12000/- approximately per month. I could avail of the same. I also explained to her the emergence of new research results and showed encouraging feedback on CML patient survival rates in the second and third line of treatments. My task was to ensure that my mother was not stressed out. We took a second opinion with another doctor in a city hospital and he seemed nonchalant to the emotions involved and bettered the situation by adding a few more years into my expected survival possibilities. I broke down outside the doctor’s cabin, to the surprise of my sister who could only exclaim, “Manoj, you can’t cry, I haven’t seen you weak before and don’t expect you to be!” To which I replied,” I am not sad at the number of years mentioned to me but the fact that my mother will have to go through the emotional trauma of a future without her child, of an incomplete family, for her unfulfilled ambitions from her son.” I had no option but to control my emotions and we returned home.
I started with hydroxyurea and a local brand of Imatinib with regular follow-ups with this haematologist. After about 3-4 days, I started developing musculo-skeletal pain all along my legs from the waist down. It was an unbearable pain that made me exclaim that I did not want to live anymore. And I did not realize that my mother had to listen to all this, helplessly, with a strong heart and mind while praying for her son. This lasted for another 4 days when in my next follow up with the doctor, he asked me to stop Imatinib temporarily and continue with hydroxyurea capsules for another week. I visited him again and this time he asked me to continue without Imatinib which had me concerned as I knew that it was not the right way to go. I enquired about Glivec and he said that it was doled out by Novartis and that I could get myself enrolled into the program. He sounded discouraging as he said that it was only a matter of time in which Novartis might even withdraw their support to the program. I asked him if it were possible for me to get enrolled in their program. I received a part shrug and part reply with a meek yes. I had information about Dr. Sunil Parekh from Dr. Leeja and also from my immediate senior in my company. And so when I decided to meet Dr. Parekh, I was accompanied by my senior and a good friend of mine. I told Dr. Parekh about the situation along with all the reports and the treatment regimen under the other haematologist. Dr. Parekh looked like he was in a professional dilemma and mentioned it to me. I assured him that I was taking this decision on my own and it would not be questioned by anyone. I received a list of things to be done and the list of things to avoid in general. I had to get my confirmatory tests done once again, this time in Jaslok Hospital and finally after the test results came out, I got the form from Dr. Parekh duly filled with details including dosage. I was instructed to present it in the little office at the back of a landmark building complex in beautiful Mumbai.
I did not know I was to meet angels on earth for I had only read about them in childhood stories.
My life began a new chapter when I first went to the TMF office. I waited anxiously with all my papers hoping for a go-ahead for my application to get enrolled in the GIPAP program. Here was this guy asking me questions from behind the counter and of course offering me refreshments at the same time. Somehow I did not feel encouraged to share my papers with him. Eventually I had to go for he looked like he was the gatekeeper. Little did I know how amusing an episode it would turn out to be, for the person behind the counter was none other than our dear Ashok B. My anxiety got the better of me and I did not see the wonderful person behind the straight face and big smile. Soon, it was my turn to go in as I heard my name being called out sweetly. While parting the curtain to enter the seating cum interaction area for the staff and patients at TMF I felt like I was opening another door in my life. Eventually, a door that altered my life drastically in a positive way opened. It made me stop living in doubt over my condition. It was a door that has had hope and love for so many like me. I had doubted this possibility while I was seated in the waiting area. I had questions about how much help would be forthcoming and wondered if I would be considered as I was employed. Maybe it was reserved for those who were less fortunate than an employed city dweller like me.
I entered the room and my eyes settled on a delicate, petite, and angelic face. It was Ayeshah with her big smile and sweet voice. I shed all my inhibitions about the next steps to follow. I could not stop my eyes from roving over all the photographs on the boards. I was looking for all the positive images I could get- family pictures of joy and the TMF staff’s wedding pictures. I kept fighting my emotions at the same time. Ayeshah explained everything about the distribution, reporting, reminders, TMF activities and introductions to some of the Mumbai core group members via photographs. This was on 19-September-2007.I started my dosage with Glivec in the first week of October.
The magic bullet worked on me.
I had my share of musculo-skeletal pains for about 4 days similar to the earlier episode but I managed better this time. Dr. Parekh with his calm composure was the epitome of positive energy. He had said the first time I met him, “Don’t worry, we will fix you.” In about a week’s time, Dr. Parekh went about methodically with the dosage regimen for me and in about 4 days I was free of any musculo-skeletal pains. No pain, no gain. Today I am as normal as anyone without CML, in both mind and body and of course my Glivec medication continues. From then on, I have had an eventful life with participation in TMF activities, moving on in my career, living life to the fullest, making new friends and meeting TMF family members in my travels. I met Sanjay in Sydney in February, 2010. It was such a wonderful one and a half hours that I shared with Sanjay on a bench outside the St.Leonards train station. It felt like both of us had known each other for a long time. True in a way for we knew each other since a long time through Viji Amma. How could one not display the same enthusiasm, the excitement and the joy that one has come to associate with Viji Amma? Today, all of TMF is a big part of the person inside me-precious, very precious. The Mumbai core group literally occupies a big chamber in my heart. With so much love from so many, that’s the least I could do, give them a sizeable piece of real estate in my heart. To all those reading this write-up, I encourage you to participate and keep participating in all TMF activities,for the family grows stronger only when its members come together often. It also keeps one up to date with the latest in research and helps generate FAQs for newcomers. It provides positivity to those who are depressed with their medical condition and of course it helps in overcoming certain medical situations that arise. Keep TMF active in Yahoo groups. My love and thanks to all and most of all to Novartis and TMF.