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Thursday, 9 November 2017

NaBloPoMo 2017: Day 9: Beating the Demon with Lord's Grace

On the 10th of May, 2014, I got a phone call from my husband’s aunt Geetha in Bangalore. One of her sisters (called Bhanu, who lives in Coimbatore) had undergone some diagnostic tests, and they wanted to know what the results implied. I’m no doctor, but two of my sisters are – so, sometimes, I receive these enquiries to get their opinion. 

What unraveled later, is nothing short of a miraculous journey. Which is why I asked Bhanu’s son Dheepak if they were agreeable to me writing about this on my blog. They readily agreed, and Dheepak sent me, what he called, “some stuff” that he said, “contains lots of distractors” and gave me “full authority to edit.”

After I read what he’d written, I realized there was no point in me writing about this.

For the simple reason that he’d written it himself with an emotion and grace that I could never hope to capture through my words.

Here, I present to you, dear readers, an amazing real-life experience penned by Dheepak Narasimhan…..

One CAN CERTAINLY win against any odds. I had just heard of this through some inspiring stories, but it was since the summer of 2014 that I started witnessing it live.

A happy last year's LTC before Appa’s retirement; to Kashmir! Still, my parents were quite disappointed as I wasn't able to make it. I had just joined work and was helpless with no leave. Perhaps their coldest experience ever, the trip went on well and they returned home safe.

Appa thought he would have a peaceful retirement and wondered what he might do post-retirement. God has plans for everything and everyone! 😐

Amma started feeling some difficulties in swallowing after the trip. We started assuming various medical conditions (from whatever we knew) but not that demon! We even used to scold her for fasting until noon and tell her "Perumal saaptu pooja panna onnum kochikamaatar”(God won't be angry if you ain't on an empty stomach for poojas). But she never listened.

And it worsened after she was back from her chithy's (Saro paati's) funeral at Bangalore (still a colder place for us who are more used to Chennai). We thought it was the weather thing - but who knew that she is going to battle a demon?!

March, 2014: They went to a hospital for a full body check up organized for Women's Day. Results were normal, no deviations. So, she happily continued taking family doctor’s medication.

April, 2014: Family doctor's meds didn't work well after few days. Now, she was not able to swallow anything solid. It steadily worsened week by week; tensions shot up at home, but I, her son, was given the bare minimum information as I was away from home, and should not feel bad. They went to a bigger hospital for further tests. Doctors found something odd in X-rays, but couldn't figure it out exactly, further tests were advised and samples were taken for biopsy.

May, 2014: Me awaiting an extra special birth month. First week was my graduation and second was a close cousin aka best friend's wedding. I was happy until I came to know that parents will directly be coming for the wedding and not my graduation! I mean- though I was not much into studies, and just got through with backlogs and stuff, I know how much this degree meant to them. They knew I did this just for them! When Appa said that they won't be able to make it, that's when I sensed something was terribly wrong.

I met them on 7th of May or so. At that time, Amma was just able to drink filtered fluids, not even liquids as viscous as a porridge. Every time she swallowed the liquids, she struggled and it used to sound weird. Still she was so positive and hopeful and kept saying that few doses of kadukkai would dissipate the tumour. And we were just praying for the biopsy results to be normal. NO DESPAIR, whatsoever….

May 10th and 11th - Epitome of ambivalence!

Cousin's wedding. I had dreamt of it for days, but just after maapillai (bridegroom)arrived from his native to Chennai mandapam, we got the scan reports from Harish, my maternal cousin from Coimbatore. And the Pathology report confirmed LARYNGEAL GROWTH of A MALIGNANT TUMOUR !!!

It was just Harish, Dasarathy, Appa and me who knew about the results. Amma did not. Neither did anyone in else the marriage hall. 

A surprise video recorded by my friends at my cousin's marriage. 
It remains a happy reminder of Amma's voice !!

To everyone's surprise, Appa, Dasa and myself were not our usual selves and everyone was enquiring if I'm sick or so. What could we tell them!? Perplexed, we tried to forget this for a day until we met the doctor.

May 12th: Adyar Cancer Institute, Chennai

Further tests to affirm and diagnose. After few days doctors came with a solution of performing a surgery called "Laryngopharyngoesphagectomy". The longest word I've heard in my life.

Since the tumour was on the voice-box and big enough to have touched the larynx(voice box), pharynx and oesophagus (food pipe), doctor suggested to remove all these! Despite mentioning that she would definitely lose her voice after this, Amma was unshaken and agreed for the operation with no second thoughts. She was so firm in her decision when a choice of voice or life was given. NO DESPAIR even then. Perumal is what she believed in at every point of time.

May 30: Operation went on from 11AM until 7:30 PM. I was stunned to see such doctors under Dr. Aravind Krishnamurthy, the surgical oncologist who were so humble, so talented and who work relentlessly to save a life. They never came out of operation theater for the mentioned tenure, not sure if another surgery was in progress, but a big salute to them.

Now Amma had her larynx(voice box), pharynx and oesophagus removed. She lost her voice, she wouldn't be able to speak. Her neck had a tracheostoma through which she would breathe and not through nose as we normally do. I would have definitely lost hope in life if I were in such a situation, but not my Amma. She just kept pitying the other kids there undergoing treatments for leukemia and bone cancer and never her own self.

After her operation she was in ICCU for 2 days and then shifted to ICU. When they started feeding through the mouth, the food was literally leaking from the stitches in her throat. Doctors fixed that in a couple of days and she was normal. We could just see her twice daily. She was shifted to a ward around June 15th.

One of my close friends was getting married, and I was in a fix whether to go or not. Amma wrote her wishes for my friend in a piece of paper and that's when I decided to go and attend. Her courage made me go seamless since then.

Radiation Perplex

After her discharge, doctors suggested radiation to reduce the chance of recurrence. 30 excruciating sittings of IMRT, if done the percentage of recurrence would be 5 to 8% and if she didn’t undergo radiation, the recurrence risk would be 9 to 12%. As a layman we may not know what radiation does to a cancer patient.

Everyone of us asked her to undergo radiation, so that the demon could never come back again. But Amma had different ideas. She was well aware of the pain few of her cousins underwent as a result of radiation and she flatly refused.

On our further visits, assistant doctors kind of forced radiation citing it is an international code to do so blah blah blah. But I must mention here that the chief doctor Dr. Alexander was so cool about it and he totally gave the choice to Amma. He even intonated the recurrence percentages in such a way that it seemed like it wasn’t a big deal refusing it. Such good hearts including Dr. Shanta are the reason the world is looking at Adyar Cancer Institute for treatments.

Getting back to our case, the whole fortnight were full of indecisiveness. The mould for IMRT was ready. But she was not ready and thus again sought Perumal for the decision. NO it was. We were quite unhappy about it but what an awesome and courageous decision it was !? We thought that one who had no fear saying yes to a surgery which would cost her voice, was so reluctant for radiation, there must be a reason behind it.

We somehow felt that there's a gap as radiation wasn't done. But we took a bit of positivity from Amma and went for natural medicines. Ramesh mama from Bangalore went to Shimoga to get the medicines from the herbal doctor Mr. Narayana Murthy (Narasipura). That's actually a hardship, we could just get the medicines on Sundays and Thursdays and had to wait in long queues, and people wait from the previous evening. He gives barks of herbal trees which has to be boiled along with pepper, jeera, et al and consumed thrice a day.

Unfortunately we had to give that up after one course as it required a fast with no sugar, salt, oil. Amma was barely 35 to 37 kgs after the operation, and this would not help her gain weight.

Next we went for Nature's Chemo care. A fruit called Graviola/Soursop (Lakshamanapazham in Tamil) which falls in the Custard apple family, is said to be a natural cancer killer. That medicine consists of Graviola leaves, stem barks and root powder. Again, this has to be boiled in water, reduced to half and consumed thrice a day with Noni juice. But Amma began showing side effects of actual chemotherapy which included hair loss and heartburn. And we had to stop that too.

All these natural medicines were just for further prevention. The allopathic doctors actually suggested no diet or so after the operation, but still she was okay for all these medicines and their diets and had never compromised it and had no cheat days whatsoever.

And all these days, we were in Perimma's place in Kodambakkam, Chennai. We did not know any pain because of these awesome ladies; one kept all pain to herself and smiled outside and the other took all pain of responsibilities.

Later, they moved back to Coimbatore, and Amma, Appa and Paati (grandmother) had to manage all alone. Paati is aged too and could just manage a part of household activities. Still they managed to do everything at Coimbatore.

At a point I felt like I need to be with them and since Appa was retired, I asked them to move to Chennai with me. They were ready for that too! People who had grown up in Coimbatore would be so reluctant for even staying in Chennai just because of the weather, but still everyone agreed and we moved to Chennai.

Amma kept practising “Belching method” to speak and is now able to converse clearly even in audio calls. From no voice to belching voice, impeccable, I say.

She did not even care to get any external aid for speaking. Such is the self esteem and confidence.

She has almost gained her weight back too. And to everyone's surprise, she even drove on the Interstate roads of the US when they recently visited me!

I want to thank a lot of people for inspiring and being there through those tough times and making them feel not so difficult. Amma and Appa, of course. Manni, Dasarathy, Paati, athais, Geetha and Chandra perimmas, chithys, mamas, Ramesh mama, my dearest friends who gave me all support, my teammates who covered my work too whenever I took off to hospital, my boss Swarna, Prasad, Venkat, who were very supportive whenever I wanted to leave office to go to the Cancer Institute, neighour maamis at Mambalam, ARR (This is Dheepak’s hero – A. R. Rahman) for providing solace at every point of time. And the list goes on….

Pic taken when Amma Appa were in the USA during Halloween, 2017
That smile says, "I've fought worse ones!!"

In conclusion, I’d like to say….
Surround yourself with positive people. Always be in touch with friends and relatives. Help them when they are in need, make them feel peaceful, hug them when they're down. These all would definitely reciprocate and who knows, you too may need it someday!

Here are whom I like to call “Real-Life Heroes” … whether it is Bhanu Akka, her husband Shri. Sampath, her son Dheepak or the numerous people who’ve supported in their time of need.

I wonder why there’s a strange moisture in my eyes as I finish composing this blog post….and I realize – it comes from a mixture of admiration and gratitude for being related to such wonderfully positive people…

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