World Cancer Day Podcast: ‘Mom, Fault in Our Stars Ho Gaya Mera’
(February 4th is observed as World Cancer Day. FIT will be bringing you stories of survivors, to latest in medical technology, to treatment options, to food and alternative medicine. This podcast was first published in 2018)
Surviving cancer is a conversation between a cancer survivor and their doctor. In today’s episode we chat with Dr Sameer Kaul, an oncologist at New Delhi’s Apollo Hospital, and Anandita Khera, a third year engineering student in Gurgaon.
Edited by: Puneet Bhatia
Below is the transcription of the conversation.
Today we are in conversation with a spunky, chirpy 20-year-old engineering student. She is a fan of Sidney Sheldon, NOT a fan of pets and someone who makes battling cancer look like a cakewalk. So, hi, Anandita.
How are you today?
Anandita: I am good, I am good. How are you?
I’m good too. So, just another day, battling cancer, winning some victories over it?
Anandita: Just another day going to college and back.
Also joining us is Dr Sameer Kaul, a leading oncologist of New Delhi. Hello, doctor.
Dr Kaul: Hi.
How are you?
Dr Kaul: Not bad at all
Anandita, tell us a little about yourself.
Anandita: I’m a third year student, pursuing computer science engineering and I got diagnosed with acute lymphoblastic leukemia which is a cancer of blood in September 2016. I’d just completed my first year (of college). So I had to drop a year in college, shift back home to Delhi because I was studying in a hostel (in Jaipur) and continue with the treatment.
Before we proceed any further, Dr Kaul I would like you to please break down this kind of cancer for someone who might not know about it. Since cancer is a very individual, case-to-case condition, putting it under an umbrella term like blood cancer is the easy way out. If you could make us understand what is this specific condition?
Dr Kaul: Cancer is nothing, but new growth. You can get scared of it as much as you want. Basically, it’s just an autonomous growth of cells. And every cell in our body is capable of undergoing this change, be it the bone, be it the blood. Whatever our body is made up of can undergo this change of, where these cells, for some reasons, some which are identified, but there are others which are coming up everyday from our research, decide to one day multiply more than they need to or they should and keep doing that and not listen to any kind of control, and that’s where the actual name of cancer which means neoplasia, new growth, comes from; autonomous new growth which won’t listen to anyone. And cancer is a bad word, I don’t use it.
Now, in Anandita’s case, it was the blood which decided to play the tricks. There are various ways in which it can play these tricks. It can do it in an acute form which means quickly, quickly, suddenly, and we discover it when it starts progressing. Or it can do it over a long period of time, in a chronic manner.
The blood is composed of many things. It is composed of the blood cells, the haemeglobin, the red blood cells, it’s also composed of lymphocytes which help us fight infections and are part of our immune mechanisms, our fight back mechanisms against disease.
Depending on which cells decide to go mad, you classify them accordingly.
Two questions - you mentioned you don’t like using the word ‘cancer’. How should an average person talk about this disease?
Secondly, when you mention infections and how infections can lead to cancer - what kind of infections? How can you contract them? Are you genetically more inclined to contract them?
Dr Kaul: As far as the word cancer is concerned, it’s basically kankrum, the crab. A crab eating you. Over a period of time it acquired so much notoriety particularly because there were no defence mechanisms against it. People would fall like nine pins to this disease. That has changed over a period of last few decades.
The crab has been defeated?
It’s not completely defeated as yet, but you can waylay it, you can break its legs, you can put it to sleep, you can do lots of things with it. You can play around with it. It gives you some kind of control.
I’ve always said that when we are conversing about this illness, we must use the word neoplasia or new growth and then say benign or malignant. There are things which cause the actual mutation, the change in the cell at the genetic level. Then there are things that promote that change and become promoters. Therefore there is a huge list of things, and infections are one of them, and infections that are viral usually.
Alright, Anandita, turning to you - how did you end up taking the test that diagnosed you with cancer?
Anandita: I was 18 years old and I turned 19 shortly after that. I had fever for a very long time, like a low grade fever, and it just wouldn’t go away. And I had excruciating pain in my legs. I was asked to go for a normal CBC (Complete Blood Count) test because they thought maybe I’m falling sick because of dengue or chikugunya. That’s how they got a test done and my white blood cell count, as he (Dr Kaul) said, was extremely high, it was 40,000. That’s what alarmed them. They studied the cell structure, put me through other tests like a bone marrow test and eventually found out it was actually a blood cancer.
What was the first thought when you found out?
Anandita: It was my birthday, I was turning 19.
What a wonderful way to turn 19, huh? With a bang.
Anandita: I came home from my hostel in Jaipur for my birthday and they put me through the tests and that’s how I found out. So, like any normal kid the first thing that came to my mind were all the movies and books I’d read. It was extremely funny because I came to my mom and said, “Fault In Our Stars ho raha hai mere saath” (Fault In Our Stars is happening with me). Yeah, that was a very kiddish reaction now when I think about it. Everybody dies in the movies and books...
...which is what my problem is with media and art and how they show cancer.
Anandita: Yeah, that’s not the true story, obviously. I am sitting here, I’m absolutely fine, I’m a better person. It was like a gift to me on my birthday from a maybe a higher power, but it worked out pretty well.
So, in your really dark times - I am sure there must have been some very dark days, what kept you going, where did you draw your sense of hope from?
Anandita: There is both, there is good and there is bad. The bad, if you let it conquer you, it can go on for a very long time. So, you have to understand that you have to find inspiration and energy in other people and things that you do everyday. My mom, obviously, was the biggest inspiration, she would NOT let me cry. She would never let a tear roll down my eye. She’d come shouting at me, “Are you crazy? Yeh koi rone ki baat nahi hai (this isn’t something to cry over). You’re fine”.
She made it sound like a picnic. We’d come to the hospital, get admitted watch movies. She would make jo bhi muje pasand hai, woh banake laana (the food I liked), I used to hate hospital food. Even my doctors said, “You’re on a holiday, pretend you’re on a food holiday. Just don’t eat outside, eat ghar pe (at home), but eat everything. I was really happy doing all of that.
Doctor, when you’re dealing with someone as young as 18 and 19, is there a specific way, is age a determining factor, how you deal with that patient, even on an emotional level, and not just medical?
Dr Kaul: I think it’s not so much the age, even smaller kids than Anandita get it. Babies are born with tumours. You have to deal with them in the most normal manner that you can and do a psychological understanding of what may be the mental make of this individual.
Next question for you, Anandita - when you were undergoing chemotherapy and radiation, did you experience any hair loss?
Anandita: I did. They said I’d lose my hair three months after chemo, but I made it almost all through chemotherapy without losing my hair (completely). I lost most of it, I cut my hair short. It was the last month of chemo, I was left with four cycles. That’s when I lost all of it. I slept with a head full of hair. Next morning I woke up and nothing.
As a young person especially, was there a concern about beauty?
Anandita: It wasn’t really a very big concern because expected tha, toh itna fark nahi padha (since it was expected, it did not affect me too much). But then they put me on radiation. The time period between radiation and chemo therapy was about a month and a half, and during that period of time the hair had started to come back. And after radiation, it takes almost three months for it to come back again. So, I had to go to my new college (because I’d shifted) and that was a little hard to deal with. Koi jaanta nahi hai muje, sab dekh rahei hai mudh mudh ke (nobody knew me, everyone was staring at me). So, that was a bit hard, but eventually (I) got over it, made really nice friends.
How has your perspective changed before and after diagnosis?
Anandita: I’ve lost the fear of fear. When I started college, when I was in school, I used to fear everything. I had a fear of failing, I had a fear of studies, I had a fear of not living up to my parents’ expectations, duniya bhar ke fears (the fear of everything). So, after a point it was like - it’s not important, even if you fail, it’s okay. You’ll just have to begin again, that’s all. That was the biggest achievement.
That’s a wonderful thought to end this on. Doctor, any closing thoughts?
You asked this question about loss of hair - I must tell you how I confront it. I myself am bald, but do I look bad to you? You can have a hairstyle like mine for a little while...
...and that usually works, it’s a trick. But I also give them other options of beautiful hairstyles, there are all kinds of hair replacement therapies now, there are beautiful wigs, you can get one made out of your own hair if you collect it.
Before it starts, that’s a particularly troublesome time. You don’t wait for them to start seeing it on their bedsheets when they wake up in the morning. You try and convince them to have a nice hairstyle like mine.
Anandita: It wasn’t expected.
Dr Kaul: The other thing about fear - I call them the fedayeen. You know who the fidayeen are? The fidayeen are the people who have no fear of death. Anandita is a fidayeen. And I don’t think she’ll fear it anymore - so, a very, very high form of existence when you fear nothing.
What a beautiful thought. Thank you, Anandita and thank you, doctor for chatting with us today.
Dr Kaul: You’re welcome.
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