My CML journey started exactly two years ago
Sailaja – Hyderabad, June 2005
I can never forget the d-day and can pretty much still replay it like a movie in my head. Life was going quite smoothly for us, when on April 9, 2003 I complained of some heaviness and tightness on the left-side of my stomach. After an ultrasound and a blood-test the next thing we knew is that I had been diagnosed with CML. That evening, as our doctor (Dr.S.V.S.S.Prasad) explained the disease to me I 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 do not expect it to hit so close to home. For me – That was the day that the direction of my life changed.
When I was diagnosed, Glivec was still new and it was not the first line-of-treatment for CML. Furthermore, Glivec cost a fortune! So most of the doctors we consulted recommended Interferon for me. The more we talked to people about IFN, the more we got to know about the horrible side-effects and the kind of miserable lives the patients were leading. By the time my diagnosis was confirmed, it was April 25, 2003, and there was more bad news as the report showed that I was in the 'accelerated phase'. My heart sank, and I couldn't stop the tears from rolling… I felt as if it was the end of the world for me.
However, on our next visit, Dr.Prasad had some positive news for us: there was this Glivec donation program called GIPAP, and that I might just about qualify for it. But we had to hurry and do everything on a warfooting, as the program was closing by April 30, 2003. It was very kind of him to fill in the application for me on a priority basis. Since time was running out, my husband went to Chennai and personally handed over my Application to Dr.P.Sridharan (Adyar Cancer Institute) for approval. In the meantime, my mother and I resorted to all sorts of prayers so that my application would be accepted. Ironically, my being diagnosed in an 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. Thank GOD for small mercies!
The time immediately after diagnosis is a very tough period, both emotionally and physically. There is the emotional trauma of being diagnosed with CML, and the immense impact this has on one's life. And there is the physical aspect of treating the disease and dealing with side-effects. For the whole first year, I think I was emotionally very fragile. Tears would suddenly come to my eyes and CML was never far from my thoughts. I would constantly worry about myself and my children's future (13year old son, 8 year old daughter). I suppose most people would feel that way. So many things in daily life remind one about it… like seeing or hearing the word cancer, advertisements for blood transfusions and talk about future family events. It was during this time that a friend of ours introduced me to yoga and meditation and a complimentary healing technique very similar to 'Reiki'. I was never a spiritually oriented person, but with CML I have started believing in the power of prayer. Now I turn to God whenever I am troubled and go to temples more often. All this plus the fact that my response to Glivec has been good, has helped me cope emotionally. The second year, 2004, handling the emotional trauma became much better. Gradually, although CML was never far away, it seemed to occupy a part of life and did not play the all-consuming role that it had before.
Life slowly began getting back to normal. Glivec has a few side-effects for me including skin depigmentation, weight gain, muscle cramps and diarrhea in varying degrees. However, slowly I have learnt to manage these and just accept them as a part of life. Of course I have the wonderful support of my husband, without whose care and encouragement I cannot imagine having gone through all this. Credit also goes to my parents and sisters who have been a pillar of support through these turbulent times. So you see CML is a part of my life and I have adjusted to it. But nonetheless, it enriches life. We do lose something, namely peace of mind, that comes from having to deal with the therapy and maintenance and monitoring of the disease and we also experience the fear of not responding to therapy or losing response to it. But now I am better aware of how precious life is and indulge in the grateful feeling of being alive, everyday. Somehow, there is a heightened sense of appreciation of things one may never have noticed before. The joy of seeing my children grow, hearing a nice song, seeing a flower, being told a kind word, all assume a richness that may not have been there previously. Perhaps the awareness of mortality, due to CML makes us value life.
All credit for my leading a nearly normal life goes to Glivec, Novartis and the Max Foundation for creating this wonderful program called GIPAP. I believe this program is one of its kind in the world. Come to think of it, in the long run none of us would have been able to purchase glivec on our own.
So our SINCERE THANKS TO NOVARTIS AND MAX FOUNDATION FOR THEIR GENEROSITY IN SAVING SO MANY LIVES! Thank you! Thank you! Thank you! 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 is like a family member to us. I also take this opportunity to also thank Dr.Prasad (Medical Oncologist, Apollo Hospital, Hyderabad) for his kindness, compassion, patience, time and attention whenever we require his assistance.In fact, so many people have contributed to my well-being in the last two years that it is really overwhelming. 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! I hope sharing this 2-year Glivec journey will help others who are coping with the emotional trauma of CML.The time from diagnosis to rebuilding hopes and picking up the pieces is very traumatic. Although, life will never be the same again for a CML patient and his/her family, with new therapies, life can be rebuilt with adjusted dreams and hopes.
Time is a great healer. No doubt there will be many ups and downs which we may have to face along the road. The pace of research and the new compounds in the pipeline make me hopeful and optimistic about the future. I do look forward to a time when there is a CURE.