The DNA make up of the species Human Beings is 99.99% same. So the immense diversity that we see around us, is because of that 0.01% difference. Unbelievable, isn’t it? That 0.01% makes people white or black, thin or fat, tall or short, healthy or sick. It could be as small as one of our 46 chromosomes playing a game of hide and seek. Imagine a part of chromosome 9 breaking off and joining chromosome 22, which it has no business to do! Like a naughty kid playing, isn’t it? Guess what it results in..Philadelphia Chromosome which in turn gives you CML or Chronic Myelogeous Leukemia.
Now the silver lining here is that this is good cancer, if there is a good cancer. Again, if you have the good CML, (believe me, there is a bad one), then it is more like a life-style disease. With medicine and good life style, you manage the disease and get to live a long life. CML doesn’t need the dreaded Chemotherapy or radiation. It just needs one tablet for the rest of your life called Glivac (Brand name). I am sure all of you have got a WhatsApp message about the wonder drug which cures Blood cancer and is given free at Adayar Cancer Institute called Imitinef Mercilet which is the generic name of Glivac. Well, it surely is a wonder drug and it controls CML. There are reports about people who have been on Glivac for the last 35 years. Glivac used to cost lacs of rupees in the beginning, making it impossible for patients to buy it. It has come down to thousands now and Max Foundation gives it free for CML patients all around the world.
But this story is about Deepak who was diagnosed with CML 3 years back at the age of 13. His father used to own two shops at that time and he went to a major Pediatric Oncology Hospital in Coimbatore. The Doctor there did not bother to put them on to Max Foundation (He is their registered doctor) and within the next 2 years both the shops were gone. Few months back, Deepak’s mother asked us to take him to another hospital for a second opinion and we did.
The very pleasant Doctor there gently tells us that she is shocked beyond belief. With Glivac, Deepak should have gone into remission within the first 3-6 months. The rest of it goes like this:
Doctor : There is either something wrong with the diagnosis or with the treatment. If the diagnosis is wrong, this could be the bad CML.
(Amma, Deepak and I are shocked. We look at each other, worried)
Doctor (Puzzled) : Sir, this is no joke. If this continues, your son won’t last long. I am sorry.
Appa : (This time he couldn’t control himself and bursts out laughing) The boy is eating well, playing well, he plays cricket, you know..he even goes to school. Don’t worry, he is alright.
(Akka looks at me ashamed. Deepak looks at me pleadingly, as if telling me, Aunty, you know my father. Please bear with him)
Doctor: You are the Doctor here or I am? He might look alright but his blood is not alright.
Appa : (Looks at the Doctor like a father looking at the stubborn child. For a moment, I thought he will pat her shoulder) I am telling you, he is alright.
Doctor: Bindu, I give up.
So we file out of the room, worried. Appa happily looks around and comments that the hospital is not bad. And he laughs his belly-shaking laugh. I lost it by that time. So I tell him, “Sir, you can laugh all you want but your son is dying. Go back to your Doctor and find out what is wrong or come back to this hospital and start fresh. Whatever it is, let me know and I don’t want to hear anything from you.”
We wait for the next 2 weeks and no news from them. So Sushila and I pay a surprise visit to their house. Appa laughs and welcomes and as usual starts talking nonstop. Nothing about CML, everything about how well Deepak is doing and about his achievements. Certificates and trophies are brought out and displayed. We try to ask Akka about what they have done or decided. But, no way..Appa won’t let us get a word in between. Then the unthinkable happens. Sushila turns to him and says politely but with a killer look in her eyes, “Sir, could you please not talk for some time?” There is a deadly silence. Appa is too stunned to say anything. Akka looks at Sushila with awe and love and reverence. I interpreted that look as,” Here is the Jhansi Rani of Coimbatore. Finally someone has asked my husband to shut up and he shut up!” Sushila calmly turns to Akka and says, “Speak Akka. What do you think?”
With the Jhansi Rani beside her, Akka speaks her mind. Says she wants her son to have the best treatment and she doesn’t agree with her husband. Since Appa is still dazed, everything goes off well. We make Akka promise that she will go to the current Doctor and will find out what is wrong.
We meet Akka every month at the office and she says no luck. Appa won’t let her go to the hospital. Few months go by. Then, a friend of mine, she herself has CML, offers to come with me to talk to the family. So, we go one day there and only Deepak and Akka are there. Deepak has gone down very much and looks sickly. Akka almost faints when she is told that my friend has CML. She is plump and looks to be in the pink of health (She really is pink…) She tells Akka that this is how Deepak should look, healthy. And she says with his blood count, he must be in horrible pain, always. She remembers that before she was diagnosed, she was in pain always and finally when the diagnosis happened, even though it was cancer, she was relieved that now the pain will go away. She said since he has been in pain for the last 3 years, he might not even know that there is another way to exist.
Akka is in tears by now. My friend asks, “Why are you not doing anything about this? He is your son, right? Doesn’t it hurt you when he is in pain?” And Akka says she can’t do anything without Appa’s permission. Without batting an eyelid, my friend says, “Then leave him. Take your child and leave him.” It has been 3 weeks since that. Akka came to office few days back and requested me to talk to Appa once again, with my friend.
Recently, someone whom I hold in high regard put me in my place. In the course of our conversation, he asked me,
He: “So you help these people, right? You were using this word ‘help’ often in the last few minutes.”
I : Yes.
He : You seem to think that you are someone because you help.
I : I think I am not bad…
He : So how exactly do you give this help? You go around the street offering help or sit at the office with a board which says ‘Help Given’?
I : Nooooooo. People come to us for help because they know we help.
He : Oh..so people come to you.
I : Yes.
He : So if these people don’t come to you, you can’t actually help. There is no point in you wanting to help unless there are people wanting that help.
I : That sounds right.
In the meantime, my friend and I are building our stamina. We are going to talk to Appa!!!!!