The Problem with Choice

Published 20th May 2020

*I’ve never been good at creative writing so excuse me for any mistakes you may find in this article*

Hi, I normally keep all my thoughts to myself and rarely share anything with anyone. But In the situation I am in, I feel like sharing my thoughts can lessen my burden and take me through whatever I’m facing.

This article mainly revolves around my grandfather and his battle with cancer.

I always wondered why most kids have a special connection to their grandparents and I could never figure out the exact reason but I like to speculate that grandparents have so much parenting experience that they know exactly what needs to be done in order to be loved by a kid, maybe thats the case or maybe they love their grandkids so darn much !
In my case, my Mom used to say that I never used to leave my grandpa’s side when I was little and that I would always run to him like a puppy jumping onto his long lost owner. Unfortunately my grandfather ( mom’s dad ) passed away when I was very young, The funny thing is that I can’t remember any of the memories I had with him but whenever I see his pictures I get emotional, Kinda weird how the brain works right ?

But I’m here to talk about my dad’s dad , I call him apoopa ( Malayalam for grandpa ) ( pupa or puups for short ). Apuppa was a bank manager at SBT ( a bank in India ) , my family wasn’t very financially sound when I was young, Because of this my dad had to spend some time abroad. That meant that growing up I saw apoopa as a father figure , As a kid I loved apoopa more than anyone I ever met and that being with him made me as happy as a kid trying candy for the first time. He was a very practical guy , he wouldn't ask anyone to do something for him. He just does it. Everyone around town respected him for his attitude towards people. Later on my dad did better abroad and took me and my mom to live with him there, That seemed like a good idea to all but wasn't all that good for me , I’ll explain why maybe in another article maybe.

Malayalis always tend to think that in-order to make money one has to leave India , which is kinda correct from some view points, but I tend to think it as inherently bad , Knowingly ditching our mother land for a foreign country and especially a Monarchy seems like giving up freedom to me , say what you want about India , it isn't perfect but Monarchy is much much worse. I wont go any further on this , will move this into another article as well

Back to my grandpa , During my 10th grade exams my grandpa met with a serious car accident, my grandpa and grandma suffered from some fractures and sadly none of us were there and none of us knew about the incident until they were released from the hospital, My grandma as a result of her fractures and some mishandling from the hospital ended up losing function of her legs and could barely walk or move her hands, for my grandpa that meant that he had to do most of the stuff around the house now. As they used to live alone , apoopa was in charge of running the kitchen and taking care of grandma as well since she could not do anything on her own , apoopa did all these thing without a single complaint, he was always happy to help.

After my final 12th exams, I moved to India to pursue engineering, which was my passion, it was something that I always wanted to do in my life , maybe it's hereditary as my dad was an engineer and my grandpa wanted to be an engineer. Anyways while choosing colleges I chose the one closest to home so I could stay with grandpa and help him out as well. For me the college I studied in never mattered , it was the education and experience that mattered.

During college, apoopa had the extra burden of caring about me as well as his regular household works , I tried to help as much as possible so he gets some free time to sleep. We used to spend a lot of time with each other , we both were fans of Mohanlal ( A Malayalam film actor ), we would watch his action films that came on the TV together, we even had a special handshake that we used to do all the time , we would touch each others noses using our pointing fingers and then bend our finger , we used to do it all the time and others kept thinking we were going nuts !

Fast forward to my second year in college, My grandpa has this unusual growth inside his nose, we consulted a local doctor since he could not breathe properly and the doctor dismissed it as a harmless growth that can be removed at any time. We kinda ignored it for a while and after a few months, when it got really bad, my dad came back home to get it removed, the doctors said that the operation is harmless and apuppa should be back to normal within a week and it was , he returned back home and he was good ‘ol apuppa within a week.

A week later I get an email with the biopsy report, I had no clue what a biopsy even was at the time, The biopsy said that apuppa had “ Moderately differentiable squamous cell carcinoma ” I had absolutely no clue what that was and I did what I normally do when I read something that I didn't know , Google it !
Turns out apuppa had cancer, I had no clue what the disease was other than depictions in movie where the actor with cancer would probably pass away soon, I did not know whether I had to freak out or to ignore it. My dad had left for work abroad and I was alone with apuppa, I had never been to any hospital other than my local hospital in my life and I had no clue how to do anything.

I booked an appointment with an oncologist in the same hospital he did his operation at , it was a long drive to the hospital , close to 200 kms away so we had to prepare early for the doctor’s visit.
I visited the oncologist’s office and they asked to take some MRI’s and CT’s of his tumor to understand more about the disease. We had to visit the hospital around 4 Times that week ( Around 1000 kms of driving ) and the doctors suggested that he should start radiation immediately for around 2 months and chemo afterwards.

The word chemo Is one of the most saddest word in the English language , no one is ever happy to get chemo. Hair Loss , Weak body, Vomiting , Diarrhoea, Discoloured skin these are some of the immediate things that follow chemo and radiation is going to make it all worse,

The doctor started to do all the initial formalities and asked to start the radiation next week. Both my grandpa’s nephew’s are doctors and they suggested to get a different opinion from another oncologist and that took us to Amrita ( A famous hospital in Kerala ) and upon investigation they found that there are tumours in his lungs and adrenal glands. And they suggested to start treatment as soon as possible.

Now comes the first dilemma, Do I do the treatment or Do I skip it.

Treating the disease means, Making apuppa, a healthy symptom free happy person go through multiple round of chemo and radiation for a possibility that he might beat cancer and actually get better.
Ignoring the disease means, Waiting for the tumour to get bigger which can spread to other organs and possibly create much more pain for him.

So what do you choose ? Well, its not my choice to begin with, Its Apuppa’s . But he could not understand the complexity of his disease , he kept saying “you decide for me because I know you will always choose what is best for me”. So I did , I talked with most of my family friends and my parents and finally decided to start treatment for the disease.
In the end I love to look at my numbers and the probability that the tumour would spread without any treatment and cause further problems was way too high and I could not see him in that situation.

One of the oncologists in my clinic once said that, In his situation , In his age with his disease there are no wrong choices.

We decided we would do a special type of radiation that causes close to no side effects and it could be completed in a week. ( Cyber Knife Treatment )
In that month alone , I drove close to 10,000 kms in my car. After all that we thought we would stay in the hospital for the rest of the treatment because I was fed up off driving and I could barely walk.

And Truth be told , those were some of the best days of my life , we decided to treat ourselves and took a hotel room in the city instead of staying at the boring hospital patient rooms and we would order food from all the famous hotels and try them out , when radiation is needed the hospital would call and it would take around 30 mins to complete the radiation , looking back I have never seen apuppa that happy.

Every non oncologist doctor I see would explain the numbers to me, A stage IV Lung cancer patient at his age statistically wont last long . At some point I was fed up of hearing the stats again and again. But Oncologists were different, they knew what we were going through and adapted to our needs.
After this experience I had a newfound respect towards Oncologists, They always kept apuppa happy and motivated, they would keep praising him and would put his comfort before anything else. Being in a profession where you are faced with death constantly , I would give up in a heartbeat , as I see it explaining options to a terminal patient is one of the most psychologically challenging jobs out there.

After the radiation we returned back home and apuppa had no changes , the tumour was shrinking , he had no side effects so he was happy and I felt things are falling back into shape for the better.

Everything was all merry and fine until one night ( Around 6 months from the treatment ), I was working on my projects so I used to stay up very late, I heard a huge sound from apuppa’s bedroom, when I went to check up on apuppa I saw him drenched in a pool of blood, He tried to get up but he fell down and he struck the top of the bed giving him a nasty cut right next to his eye. I dressed the wound as I could and waited a bit for him to be stable before I took him to the nearest hospital. They diagnosed him with low sodium. Low sodium for a lung cancer patient means that the tumour is probably back up again.
We spent a few days at the local hospital until he was all well and then we visited the oncologist, and as our worst fears the tumour was growing again , which meant he had to take radiation, again, and did that too , it took nearly one month but since we had experience with the process it was much simpler this time.
After the radiation the results were very poor and the cancer spread to his kidneys as well , while taking the scans they also noticed that the fall he had earlier caused a bleed in his brain and that was also looking bad. Because of his worsened condition they started him on chemo.

To Sum up , he did radiation twice and now was on chemo, With all this happening , once we got home , the bleed got worse and he started to get neuro symptoms like memory loss , confusion and loss of balance , so he had to have emergency brain surgery. He took around a month to recover back to his original self.

In the hospital after the surgery he was moved into the surgical Intensive Care Unit, The nurses over there told me that he is barely conscious but he was still trying to touch her nose, I didn't understand why he was doing this at first , he later told that he was always seeing me and he wanted to touch my nose ( Thats how we greeted each other ) but he kept touching the nurse’s nose instead.

After all this he was still strong and still fighting , His GrandDaughters wedding was scheduled on the second week of December and he was extremely happy to attend it. But as luck may strike on the first week of December his bleed got worse yet again and he was admitted for brain surgery for the second time. He Recovered in a month and he was back to his old self.

After 2 radiations and 2 brain surgeries later and being on chemo for almost a year , he was still capable of doing his daily routine and still never asked for help.

Now that you have the background cleared up , let me get to my situation

After a Few Months into chemo, I had to admit him into the hospital since he had memory loss, confusion and breathing difficulty , once in the hospital the doctor said that the tumor has probably moved to his brain and bones which can explain all his symptoms , which also meant that there is no cure for his disease, So the question is , should I stop treating his disease or not?

He could not recognise me or understand anything or talk in his last stage, My dad or any other family member could not stay with me because of the whole corona virus problem, the doctor asked me if we had to move to palliative care ( ie just pain control ) or not. Which put me in a dilemma , I can’t just stop treatment because my ethical and moral values don’t let me do that, I cant continue treatment because the underlying cancer is untreatable and will stay as is , so treatment is just going to give him more pain. So what do I choose ?

To answer this question you also have to know if he will be peaceful after death, will he attain peace or will he be hurt more ?
Because Apuppa believed in Hinduism he also believed that there is peace after death, so death becomes better than eternal suffering.

In the last few days when he was in the ICU , he could not talk much, but he still used to touch my nose, the nurses in the ICU used to say that the only thing apuppa talked about was to see me again. After he was moved from the ICU he was in a tremendous amount of pain , he used to cry regularly and I could not see him like that, after what he has been through keeping him alive to endure more pain just did not make sense to me in any way.

That made me choose palliative care for apuppa , so they skipped any and all treatment that could cause him pain and started reducing his pain by giving sedatives and other pain relievers , On the 4th Day after starting palliative care , Apuppa passed away. He was sedated while he passed away, I was with him as he passed away and I cannot ask for anything more.

At his age he was not battling cancer, the day he was diagnosed he lost the battle. We were just trying to delay the inevitable.

Now I cant stop thinking whether he would have survived or been happier if I would have done anything differently, I cannot stop thinking whether he would have been happier if he was not treated at all , or if we skipped the chemo or any such decisions.

I am extremely happy that I got to be with him in his last years, and I believe I tried my best and whatever that I did , I did to make apuppa better, but I still feel guilty for some reason, I cant pinpoint to the reason but I hope it will resolve with time.