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My story……and life goes on

Sailaja K – Hyderabad, 2008

 

Hello friends! My life had been pretty idyllic. I had a wonderful husband, two beautiful kids and a comfortable home. Life was going quite smoothly for us, when on a summer afternoon in April 2003 I complained of some heaviness and tightness around the abdomen. Since I had also been having mild fever off and on for the past two weeks, my husband took me for an ultrasound and a blood-test. That evening as I  sat on the couch reading and watching TV, I got a call from my husband asking me to get ready as we had an appointment with a doctor. I went for the appointment feeling good, telling myself 'It couldn't be anything serious.' As we sat in Dr.Prasad's consultation chambers, nothing had prepared me for the rude shock I was about to receive. After going through the reports and some brief queries, Dr.Prasad began explaining to me about my CML diagnosis. I was shocked and said to myself ‘This couldn’t be happening to me; surely there must be some mistake.’ Unfortunately there was no mistake.

We often see tragedy befalling others and not expect it to hit so close to home.
 
My first Internet search brought me some very scary results. Life expectancy for CML was frightening – those were the pre-Glivec statistics. I was a young mother – my kids were 7 and 12 years old. They needed me. If I died, who would take care of them? I was a mess. I spent that entire weekend thinking about life and how much I had taken for granted. I thought I had a whole life ahead of me and now perhaps I would never see my kids grow. I sobbed most of that time. At that time Glivec was still new and it was not the first line-of-treatment for CML. Furthermore, Glivec cost a fortune! However, Dr.Prasad had some positive news for us: there was this Glivec donation program called GIPAP, and I might just qualify for it. Ironically, my being diagnosed in accelerated phase turned out to be a blessing in disguise, as a couple of weeks later our doctor gave us the good news that my application for GIPAP was accepted. That was one of the important days in my CML journey.

I am my own nurse now as I take an active part in my disease management

After diagnosis I went through a very tough period; both emotionally and physically. For the whole of the first year, I was very fragile. Tears would suddenly come to my eyes, and CML was never far from my thoughts. I would be lost in my own depression and felt sorry for myself. I suspect most people would feel that way. I want to thank support groups on the internet which saved my sanity and my life, and gave me the motivation to move on. From the moment I accepted the reality of my situation, I told myself I was going to fight this thing and not going to give up on life so easily! I began to take an active interest in my case. Now I study my reports and compare them to previous tests. I want to live and I want to be there for my family.
 
Being diagnosed with CML changed my world and my life.
I feel blessed and lucky everyday. Now I do yoga and meditation (almost regularly) and go for a walk whenever possible. I was never a spiritually oriented person, but I have started believing in the power of prayer. Over time, life started getting back to normal and one almost forget about the leukaemia, well at least it began to take a back seat for the most part. I take 600 mg daily, and though there are side effects I have accepted them as a part of life. What is important is that my response to Glivec has been good and I am here today, 5 years post diagnosis. My kids are growing and we are going about life as normally as any family would. Nobody knows how long they have to live. The only difference is that I have been given prior intimation about the fragility of life and I see it as a gift.

All the credit goes to Glivec, Novartis and the Max Foundation for creating this wonderful program called GIPAP.

It is a fact that I am here today and leading a near normal life due to  this program which is one of its kind in the world. Come to think of it, none of us would have been able to purchase Glivec on our own in the long-run! So our SINCERE THANKS TO NOVARTIS AND MAX FOUNDATION FOR THEIR GENEROSITY AND SAVING SO MANY LIVES! A very important and integral part of this program has been Madam Viji Venkatesh. Thank you Viji for being our ‘Cheer Leader’, boosting our morale, bringing us all together (Friends of Max), and connecting us through cyberspace. She is full of life, warmth and compassion, and like a family member to us. I take this opportunity to also thank Dr.Prasad (Medical Oncologist, Apollo Hospital, Hyderabad) whenever we have required his assistance. It was unfortunate that I got this disease, but I consider myself very blessed to be associated with all these caring people… God had indeed been very kind!
 
All those who are newly diagnosed, please know that CML is not such a scary thing.
It is possible to live a “normal” happy life with this disease. The time of diagnosis is very traumatic and then comes the time to pick up the pieces and rebuild life with adjusted dreams and hopes. Time is a great healer. No doubt there will be many ups and downs which have to be faced along the road. But what I do believe is the saying "What does not kill you makes you stronger". My advice to everyone is: Please take your medicines daily without fail, don't take your health for granted, get your tests done regularly, and always follow your doctors' instructions.

Bottom line DONT BE COMPLACENT ABOUT YOUR TREATMENT AND YOUR LIFE. While Glivec is not a cure, we will all have to take it for the rest of our life or until a cure is found. Recently, Dr.Drucker said that he is very confident that there will be a cure for CML in the next 5-10 years. Think of that…. a CURE for cancer. My best wishes to all.
 

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