R. Rajeev – Bangalore, October 2006
When I set out to write my story I found it very difficult to get one straight. I always like a good story, something which holds interest and is well written. And in my story there was nothing dramatic to build on or write about. Anyways I'm making an attempt here; else Ms.Viji said she would not hug me at the All India Meet.
Maybe the bindaas college life saved me from breaking down.
Well I was diagnosed in 1993. Yes, I belong to the veterans group now, but that was a time when nobody knew what an e-mail and internet was. So you can imagine how long ago that was. Actually I've forgotten my first reaction to my CML. (Sorry I have a bad memory. Nothing stays in my memory for long). I vaguely remember that I didn't cry, I didn't go into a depression and I didn't even become hysterical. Actually there was no major reaction. I still don't
understand why I didn't react dramatically. At least I would have had something to write here today. Maybe it was the age. I had just stepped into my final year of B Com (in 1993) and I was surrounded by my friends, guys and girls. Life was carefree. When you are in college you are like Aamir Khan and gang in Rang de Basanti; just living for the day. No 5 yr, 10 yr plans, no goals to be set. Yes, of course there was one goal at that point. That was not to flunk in any subject. And thankfully I achieved that goal.
I remember we had details of CML faxed across from USA. I told you there was no internet that time and hence no Google. And I went through it pretty studiously, especially the survival part. I feel, when one decides to live for today rather than living for tomorrow, one actually starts enjoying life. Then, every cell in the body goes into celebration mode. Maybe that's what somebody (sorry bad memory) meant when he/she was talking about celebration of the cell. And I also know that this is easier said than done.
I suppose that's why God gave us Glivec. I vaguely remember that I wished I would live for 15 more years (from 1993) since I knew medicine would develop a cure by that time. You see I'm always practical, even when wishing. And it happened within 9 years. So I'm re-applying my wish and enhancing it to a complete cure within 5 years. I think it's not impossible now. Quite a reasonable wish right? Of course I went through Hydrea till Glivec came in, and also tried Interferon for some time. I had to take pricks for 1.5 years. It was costing about 25k per month. And my father passed away in between. And then finally we had to stop it for want of funds. Quite an expensive disease, this Cancer is. And in the 9 yrs before Glivec I had to try (apart from allopathy) homeopathy, ayurvedic medicine, spiritual help and prayers, etc. etc. It was more to do with faith healing. And unfortunately I didn't have faith in faith healing. Probably that's why these alternatives didn't work.
I read about a wonder drug for CML in the newspapers and since it was a breakthrough I knew it would cost a bomb. After going through Interferon's 25k per month, we were not ready for a huge expenditure on a monthly basis once again. So I was contemplating going for the Indian version of Interferon which cost 15k p.m. Then I enrolled into the Asian CML Group and one Sourabh there told me about Glivec being given free. Free? I couldn't believe it. There had to be a catch somewhere. Nothing comes free in this world! And then I met Viji… I remember the first time we met at Hotel Taj Gateway. I was overwhelmed by the warmth she exuded, when she greeted me. It was a brief half an hour meeting. But I still remember it even after meeting Viji many times after that. The way she smiled, greeted, spoke to me and gave me confidence was something I hadn't experienced earlier. It was a great feeling. You know the kind of first time experiences you never want to forget.Viji processed my application in a week's time. And I was on board. I was accustomed to the rather slow responses of the government hospital I was enrolled in (for the last 9 years), and the quick response delighted me.
I felt…Aisa bhi hota hein India mein?! Nonetheless my doctor, Dr. Govind Babu has been a great help throughout my journey. He's been extremely supportive and whatever words I use here to thank him wouldn't actually capture the heartfelt gratitude I have towards him. With my doctor's and hospital's help (especially Dr.Janet Parameswaran), Novartis , Glivec and Max Foundation gave me a new lease of life. (Hydrea, Cytarabine were working in a decreasing trend in my case). And the rest is history. In these 12-13 years of CML, there are a few things I have inadvertently followed which I think have helped me keep my cells (more or less) in celebration mode.
One is not to have any goals. I know this is something unheard of in today's world. And I've faced problems due to this attitude at many interviews. Whenever the interviewer has asked about my medium term and long term goals or where I would like to be 5 yrs from now, I've never been able to give a satisfactory answer. Because I don't have the habit of seeing anything beyond one year. And 5 years is like an extremely long term for me. Not having goals has its own pitfalls. One becomes un-ambitious. One starts getting satisfied with whatever one has. I say, live only for today or maximum only for the financial year. Nevertheless I've unconsciously fallen under this spell and find it difficult to shake it off. One good thing out of this is that I've never faced stress for not having reached my goals or faced stress for not exerting myself towards achieving something.
Second, not to take anything (or anybody) seriously. That's an offshoot of the first one mentioned above. That also makes one shun responsibility, or makes people see one as irresponsible. It also means not being given promotions easily. The only good thing about it is nothing can shake you and you can laugh even when people around you would be sweating it out at the gravity of the situation. So this attitude will keep one cool under pressure.
Third, do not to have a healthy diet. I've never taken carrot juice, beetroot juice, and wheatgrass (yuck!) juice or any other health drinks. I've always followed a strict diet of pani puris, bajhyas, pav bhajis, biryanis, dosas and all other sundry items available on the roadside. Nothing to beat the taste of roadside food. You know, the logic behind this is simple. When one eats junk food one feels normal. Avoiding it means a feeling of either being sick or being health conscious. Psychologically both are bad for CML. Tho khao piyo aish karo!
Fourth; exercising (ir) regularly. Exercise is good for the body. It keeps anti-oxidants out of the body and boosts the immune system. It also keeps the body agile and strong enough to fight fatigue. It's my sincere advice to everybody to jog or at least brisk walk 3 times a week. As for me, I do a little bit of weights… once every 3 months!
Fifth and the most important thing is to stay single… Because if one gets married one has to forego the four things mentioned above (with due respect to married people). I know it's nice to have a supportive partner. But it also comes with excessive baggage. Well I'm not saying that the partner would be a burden, but the responsibilities can become cumbersome. If at all any (CML'rs) wish to get married, they have to fall in love. And since love is blind or rather a blur, it will ensure that one doesn't see the excess baggage around the prospective partner, and enables one to take the plunge. Actually it's human tendency to yearn for partners, so sometimes it becomes difficult to follow this fifth rule. So until (and if at all) this fifth one may come true for me (I'll definitely put up a good fight) let me enjoy the four things mentioned above and let my cells be in celebration mode.
Hey I forgot one more thing. Going to temples…Praying. Well at first I thought this is a given and so no need to write about it. But one thing I wanted to say is that it's always better if one's partner or parent does all the praying because if you pray for yourself you are being selfish. And God dislikes selfish people. Or, pray that your partner/parent never has to face difficulties because of your CML. This way you are seeking the well being of somebody else and not being selfish. No harm in being cunning here right? After all it's for the good of someone else!
Well everything mentioned above is strictly my viewpoint. If you want to practice the above mentioned points,
do it at your own risk. Don't hold me responsible for adverse consequences!
Enjoy Maadi as we say in Bangalore ! And Have a Good Day?!!
Shaadi ke Baad
Shilpa Rajeev – Bangalore, October 2007.
Shaadi ke pehle
I'm Shilpa, Rajeev's wife. As you may be aware he's from Bangalore, and has been diagnosed with CML in 1993. I'm from Mumbai! Thanks to the internet & Bharatmatrimony.com we were able to bridge the 1000 odd kilometer gap between Bangalore and Mumbai. When Rajeev sent me a proposal he had mentioned his “problem” but still it didn't hurt me or put me off. I don't know why I was cool about it. Perhaps I was not perturbed because he was on medicines and was doing fine.
I thought only of one thing "JO NASEEB MEIN LIKHA HAIN WHO HI HOTA HAI " and I had full faith in God.
So we started chatting regularly, exchanged snaps and were fine with each other. However, he insisted that I go to a Cancer specialist with his reports so that I could take a decision after knowing everything. So with the help of one of my friends I took an appointment with Dr. M.B. Aggarwal. I went to see him with my elder sister; till then no one from my family knew about it. Since it was the first appointment with Dr.M.B.Agarwal, as per the schedule in his clinic we met his wife Dr Mrs. Agarwal and then went on to meet him. The doctor's wife was thrilled and amazed upon hearing how Rajeev and I came in touch with each other and that without even seeing each other, (especially after knowing the problems on both ends… I have a history of polio) we were so keen on getting married. Despite her busy evening in such a crowded hospital of patients she asked me to come back and tell her what Dr. Agarwal would advise.She immediately passed my file ( Rajeev's reports ) to Dr Agarwal and after going through them he began to speak to me He told me that such kind of reports are very rare ; here was a case when a patient was diagnosed with CML since so many years and was still doing fine. The reports were as close to normal as possible. He said nothing would happen to him for many more years to come as lot of advances were taking place in the field of CML. But he
also cautioned me as it was his duty and responsibility. He added that nobody could predict the future with any kind of guarantee. Anyway, I had already made the decision (even before I met Dr. Agarwal) and after that meeting I felt even more positive. I went back to Mrs. Agarwal and told her what he had said to me .She was very happy. She hugged me and gave me a lot of blessings. Then my brother and I came down to Bangalore to meet Rajeev and his family. That entire day we were together. I was so happy to see him face to face, since until now we had been seeing each other, whenever possible only on the webcam. But we had become close, and I realized that now I was free to tell him my feelings, share with him my concerns, doubts and problems. I was sure our married life would be good in terms of understanding each other. Nevertheless it took me almost six months to convince Rajeev that; married life would be better than his bachelorhood, that he could still talk to his girlfriends (but on the phone!!) and that I could take care of myself and him. I even had to convince him that I would not demand too much jewellery, clothes and other luxuries. And I also convinced him that I would learn Kannada as soon as possible.
We got engaged on 15 Jan 2007.
He had come down to Mumbai, with his Mama. One day before the engagement we went to Worli, to the Max Foundation office and met Amma, Ayeshah and Sharon. It was a wonderful experience. Rajeev had told me that Amma was an elderly lady and that she was very strict. He had asked me to behave myself in front of her. But when I met her she was exactly the opposite. I then realized to my relief that Rajeev had been pulling my leg. Amma was amazingly young at heart, always laughing and smiling. I found her very charismatic; a lady who could make heads turn (by the way, as you all must be aware, she also has a voice which will make heads turn) I was very comfortable talking to her. It was as if we had known each other for a long time even though the only thing we had in common was that we were both Mumbaikars. Of course the other common factor was “Rajeev” We went out for lunch with them, for a Gujarati thali treat to Amma's favourite restaurant. It was great to be with them for lunch and spend time with the team like that.
Shaadi ke baad
We got married just after Valentine's Day on the 15th of February 2007.How I wished we had got married on the14th instead of the 15th, on Valentine's Day itself. Rajeev also wanted to get married on that day so that the marriage anniversary date could never slip from his mind .You see his memory is pretty bad !Soon after our marriage Amma came along with Ayeshah to Bangalore to plan a meeting for the Big Bangalore Friends of Max meet on 26th January 2008. Before that I had attended a small group meeting at Param's house with Rajeev. It was great to meet everybody and I must say that it is wonderful to be part of such a wonderful group of people. It saddens me sometimes when I think of the disease that brought all of us close but as humans even though we are helpless, I realise that by bonding with Friends of Max we are all able to find new and strong meanings in our lives. After meeting our GIPAP Members I always look forward to the next meeting as everyone is so happy and full of smiles in these meetings. Now I'm waiting to meet many more members in this amazing family – on the 26th of January 2008 at the BIG MEET in Bangalore.
Marriage is a wonderful experience. One's life changes entirely and it is all for the good …..
Over to Rajeev…
Oh Yeah! Life really changes after marriage. One learns many new things which one wouldn't have learned otherwise. Like facing new challenges, setting new goals and the most important thing; it makes one take “responsibilities” and “sharing” as a given. And oh yes, it also makes the 'guy' learn the “art of balancing” (mainly between mom & wife) very well. And also learn to take the hit in one's stride…if the balancing goes wrong…! Well, let me list a few good things about getting married and how it helps.
1. It makes you more responsible, for all your acts, so you always think twice and thrice when you want to do something “risky”. This way there will be a fall in adrenaline levels and you will slowly become risk averse.
2. You will learn to answer questions in a very diplomatic manner. Is taraf bhi nahin, us taraf bhi nahin. This new attitude helps a lot in career growth also because diplomacy is a skill which you will need to develop, as you go up the ladder.
3. You will become health conscious, in the sense that you will be forced to show more interest in healthy eating and health supplements. For example there will be no deep fried items in the menu, only tandoori and so on. You will look at exercising (walking in the park romantic to say the least) more closely than before, and try it out more frequently than before. So marriage really makes you consider the option of leading a health conscious life.
4. You will set goals like 1st Anniversary – gold jewellery, 2nd Anniversary- car, 3 rd Anniversary- house and so on and on. This will force you to earn more, and you will consciously look at enhancing skills required to earn more.
5. You will look at long term investments like pension funds and similar schemes more closely. If this attitude had struck you earlier, you'd have created a bigger corpus. Anyway better late than never.
6. You will begin to learn what goes into the food you eat everyday, and more importantly, how much each ingredient costs. You will learn to eat whatever is prepared. Thankfully my wife cooks well, 75% of the time; for the balance 25% I can always fall back on mom's food. (I get a good combination of North-Indian and South Indian meals everyday. Do you realise how lucky I am?)
7. Slowly, you will learn to cook, learn to make your own coffee / tea, breakfast and sometimes dinner. You may also “dream” of becoming a better cook than your wife or mom. By the way don't dare discuss this dream at home!
8. You will learn to apply techniques of budgeting, analysis, growth, balance sheet, cash flows, scientific filing of documents, asset management all this at home ! You will understand how home can also be
run like an organization. It also means you'll be working 24×7 -10 hours at office, 6 hrs at home, and 8 hours of sleep. A very balanced life!
9. You'll learn to manage your vacation more efficiently, and make sure there are no lapses in the days off you have to your credit.
10. You'll learn to value the importance of meeting up with your old friends and relatives, and will learn to take time out for them.
11. Most importantly, you will learn to value your parents, who would have been doing all the above without letting you take the burden.
12. The lessons one learns will go on and on as the years pass….so as Shilpa says, Its a wonderful experience to get married, one's life entirely changes and it is all for the good …..
By the way it also helps one cope with CML. You'll be so busy learning new things; you'll find less and less
time to worry about the disease….
And not worrying is always good for health.