Dr. Shital Kiran – Bangalore, October 2006
My autobiography. Isn't it a nice opportunity to write our special stories, filled with suffering, sorrow and joy? I am really overwhelmed by this project and I can't imagine how to thank Viji our dear Amma and The Max Foundation to have given all of us this chance to write our experiences.
My spouse and I went to Ooty and Kodaikanal for our first Anniversary on 20th February 2004. It was really nice since we were still in a honey moon mood. We lived in a dream land; wanting a baby, a nice bungalow and a happy healthy family. But no one can always stay in a dreamland; they have to face the 'kadava sach' as they say in Hindi or the bitter truth of life.
After coming back from our journey I noticed that I was losing weight without being on any exercise or diet regime. I became suspicious that something was wrong somewhere. Then I started experiencing an odd kind of back pain; a dragging type of pain. I thought this may be due to stress, so I started applying some analgesic cream. It was worse after I had heavy meals. On Ugadi, a New Year day according to the Hindu calendar, i.e.21st March 2004 we had a family get together. My cousin Dr Sharat Kumar, a medical doctor, and who is a pediatrician in Chandigarh, heard my symptoms and advised me to go for a blood check up.
Next day itself I went to a nearby hospital for a blood checkup. I met a physician also but he told me to wait for the blood reports before he said anything. The pathologist Dr Baliji was my colleague, and he gave me the bad news about the blood reports on 24th March 2004 and with great difficulty. He had called one Dr Srinivas a hematological pathologist to confirm the diagnosis and asked the latter on how to go about it. Dr Srinivas told him to run away from the hospital when I came, but Dr Balaji was very wise, he made up his mind not to run away and handled the situation coolly. So I was told that I was suffering from Chronic Myloid Leukemia; a type of blood cancer.
It was really heartbreaking news. We could not express our feelings as it was a great shock to all of us. He advised me to meet Dr. Mammen Chandy in Vellore. He said he was the best hematologist in India for bone marrow transplants and that he had got the best results in India. He was also well informed about the wonder drugs which have come into the market.When we left the hospital we had no words to say to each other. What would we tell my patents and in laws? What would their reaction be? It was really horrible to imagine the reality. I had never expected that life would bring such a painful moment to me. Later my brother- in -law Dr Vikas Bargale told my mother about my illness and she started crying. It was another bad moment that will remain with me all my life. Then I decided to go to Vellore and meet Dr Chandy, the only hope I had left.I was also in a dilemma whether or not to take a second opinion about this diagnosis.
Mean while we got an appointment by e-mail to meet Dr Chandy on 6th April 2004, 15 days after the diagnosis. That duration of time went with great stress because we had a lot of queries in our minds about what would happen next. What would the line of treatment be and more over worries over its cost. Would it be affordable? So you see I had lots of negative thoughts in my mind. We went to the Manipal hospital in Bangalore for a second opinion. But the oncologist who we meet also gave us the same diagnosis. He gave me two options; firstly BMT and secondly Veenat/Gleevac, which was a new drug in the market and which had been introduced 4-5 years back. But he was also positive about the drug's success as compared to BMT. He said that the cost of the drug would be more than BMT and that the drug has to be taken life long.
So our last hope rested only with Dr.Chandy. On 6th April we went to CMCH in Vellore where we met Dr. Uday in the hematology department. He told us to do the blood test again. CMCH is so huge when we reached there we were amazed that we could not find our way and there was nobody we knew there either. Everywhere we looked there were patients and no way to meet Dr Chandy. Finally we got an appointment at 3pm but the rush was too much so we could not meet the doctor till 8pm. However, the doctor was pleasant, even after nearly 200 OPD's. He discussed all the treatment parameters and gave us two options; BMT or the NEW DRUG that is Gleevec. He also informed me about the GIPAP program which had been introduced 6 months back in the hospital.
Meanwhile I was under Hydrya. When I started taking this drug I felt severe weakness and discomfort. I was bed ridden for almost one month. So I told the doctor about the side effects of Hydrya. He advised me to enroll in the Gipap program. For BMT, all 6 HLA had to be matched and my brother was a perfect match. When I informed Dr Srinivas he virtually jumped off from his chair with joy and said that if the drug did not produce good results then I could opt for BMT.
Since I am an internet manic I started collecting and reading information on Cml. For my particular diagnosis I started collecting research articles and taking opinions from hematoncologists through out the world.
Then a golden moment came in my life when Dr Goldman, a CMl specialist invited me to Mumbai on 2nd October as he was supposed to give a talk on this topic in one of the conferences. As the name suggests Goldman is really a man with a heart of gold. He explained a lot about CMl to me. Dr Goldman became my mentor.
As the days pass, I am doing fine… I am becoming superman. And the good news is that I will be blessed with twin babies in Feb 2007.
I am continuing from where I left last time; sharing with all the readers the great news that my wife and I were expecting twins later in the New Year. Seema had already gone to be with her parents in Maharashtra during the confinement and I was in Bangalore, literally counting the days. Quite unexpectedly one fine evening on the 23rd of December 2006 I got a phone call from my father- in- law telling me that my wife was in some sort of pain and he wanted me to go over to their place near Kolhapur as soon as possible . Some three hours later I again got a call saying that she was being hospitalized. I knew I had to leave immediately. But then it was Christmas and everyone was already going somewhere or the other and unlike me they had booked their tickets in advance. I went to see if I could book tickets but unfortunately I could not find any mode of transport – bus, train, flights nothing was available. I returned home empty handed and totally dejected wondering what to do. Restless, I thought of going once again to the travel agent in search of tickets, and I got lucky!! Just one hour back the travel agent had told me that no tickets were available, but now he told me that a ticket was available, as just minutes back someone had canceled his travel plans.
THE WORLD'S FIRST GLIVEC BOY-BOY TWINS. History was created (assuming and not reported!) I got the joyous news on the way. I had been traveling with my mind full of thoughts, worrying over what would happen since it was only the eight month of Seema's pregnancy. Anyway, our first son was born at 9.43 pm and just 2 minutes later came our second son .I was desperate to see them all and I regret so much that I was not there during the delivery. On the morning of the 24th at around 12 noon, I first saw my twin sons, they were absolutely normal, healthy, and I can say super babies.
Now their eleventh month is running and they enjoy the world. The first born is named ANKIT and the second one is named SANCHIT.
My twin sons have given me amazing strength.