MY CANCER JOURNEY: THOUGHTS ON HOPE, LOVE AND A LITTLE BIT OF PAIN.
During the course of my treatment, I met a lot of cancer survivors, some of them would visit cancer patients to offer support and guidance. I remember telling Aditi that I didn’t understand how these people could relive their cancer experience again and again, and that when I was done with my treatment, I would just close this chapter of my life and move on and never talk about it again. But it doesn’t really work like that, because an experience so deep and a pain so real can never really be forgotten and you want to share that experience with others so that they may find comfort in the fact that someone somewhere has gone through something similar and that there is a light at the end of the tunnel. A lot of people around me have urged me to write about my experience. I had been hesitant for quite some time, partly because I am not really a great writer, and partly because I was scared to relive those memories, but then I thought, what the heck.
Last year, I was diagnosed with Stage IV Lymphoblastic Lymphoma. A rare, serious but potentially treatable form of cancer. This is my story.
It was a scene right out of the movies. A weary-eyed doctor walked into my ward and asked Aditi to come out while I lay there, still recovering from my surgery from a few days ago. The disease had spread through my abdomen, causing fluid to build up in my right lung, causing it to collapse. In the good doctor’s words “it was just floating there in a pool of liquid”, a massive effusion, he called it. To resuscitate my lung, they had to drill a hole, put a pipe through it and drain all the fluid out ( about 15 liters).
When I woke up from the Anaesthesia, I found a big round pipe attached to my body depositing fluid from my chest into some kind of tank with lots of buttons on it. They still didn’t know what was causing it though. They had thought it was Tuberculosis but all the tests for TB had come out negative and I had been coughing and gasping for air for three weeks now. So they decided to pull out some tissue from inside my chest and send it for a biopsy. Now, you can call it the effect of watching too many films, or you can call it instinct but the moment the doctor took Aditi out of the ward to give her the news, I knew it was cancer. By the time they came back in and the doctor delivered the news to me I was just hoping it was something that wouldn’t kill me and if it was going to kill me, it better do it quick.
So the doctor gave the dreaded news, comforted us and left, leaving me and Aditi to deal with the shock of our lives, alone. I think an entire day passed in silence, while we waited for the rest of my family to process the news, deal with the shock themselves and start planning for my treatment. Over the course of the next few days, there would be a few more test to confirm the stage and type of cancer while the doctors in the family gave us more details about the disease. They told us it was going to be a tough fight but a fight that we could win.
Since it was an aggressive form of cancer, the treatment had to start immediately, so we flew home (Gurgaon) the next day and got admitted in this behemoth of a hospital. Chaos followed, as it always does with mismanaged hospitals of this size and the start of therapy kept getting delayed, while a baseball-sized tumor kept pressing against my heart. Eventually, they said they were going to start therapy and they gave us our treatment protocol, a 10-page document with almost 60 days of chemo lasting over 6 months and maintenance therapy that lasted another 2 years, the UKALL XII protocol. Before I was diagnosed, I always thought people got chemo once a month and after like 5–6 sessions you were done. I thought mine would be the same, but apparently, treatment for lymphomas and leukemias had to be aggressive and long to yield the best results and since I was young (with the rest of my life ahead of me) they had to go all out. The treatment protocol sent me into deep shock and I felt that I was never going to get out of the hospital. If cancer didn’t get me first, the chemo surely would. I got obsessed with reading about stuff on google, the more I read, the deeper I went. It became so bad that by the time the first cycle of chemo ended and I was discharged from the hospital 4 weeks later, I was barely speaking. I kept sitting on my balcony, silent, thinking about my disease, scared of everything around me, waiting for my next 28-day cycle of chemo to begin.
My first cycle of chemo which lasted about 28 days with around 12 days of the chemo had gone about pretty smoothly to my oncologist’s surprise. There were no complications, no infections, no unscheduled trips to the ICU, I had handled it pretty well. The mental damage though was another story altogether. The shock of the disease had enhanced the anxiety and depression problem that I already had. I was paranoid and out of control. I would cry, shout and laugh all the same time and my behavior had started taking a heavy toll on my family. The bouts of anxiety and anger would continue for quite some time as it happens with a lot of cancer patients. It happens because they are driven by fear. One of the reasons that make cancer such a dreaded disease is the uncertainty around it. No one can tell you whether you would be fine, whether the treatment would work, how the side effects would be and it is this uncertainty that manifests into fear and causes havoc with your brain. During treatment, its the fear of the chemo, the fear of losing your job, your mobility. After treatment, its the fear of relapse. It never really goes away, you just learn to deal with it better.
A word on chemo
I read somewhere that the goal of chemo is to kill everything inside you except you. That person was right. It is basically poison. The spinal injections still give me nightmares.
A few days later, the results of my next scan had arrived, the results were positive and the cancer was in remission, the treatment had worked. It was a time to rejoice, but also time to brace up for the next round of chemo, or carpet bombing as we had learned to call it.
The previous rounds of chemo had started taking a toll on my body. The first thing to give up was my legs, unable to walk I had resorted to crawling everywhere. Then came the arms, followed by the rest of the body to the point that by the time the second round of chemo ended around the end of July, I was unable to move from my bed, only getting up to go to the hospital to get my treatment. Over the course of the next few months, the pain and fatigue would only get worse. The anxiety was at its peak and I realized the chaotic hospital was adding to it. The doctors were rude, the staff unhelpful and no one gave any answers. So we decided to change our doctors and move back to Bangalore, our second home. We were lucky to find and be accepted by one of the best oncologists ( Dr. Hari Menon) in the country in Bangalore. The move to Bangalore immediately made me feel better mentally. The hospital was comfy, the doctor was amazing and the staff was kind. While things were improving mentally, my body was constantly deteriorating physically. The chemo and the heavy dose of steroids were causing havoc on my body, and I was running on reserve. On top of that, I had started looking like a helium balloon due to the bloating caused by the steroids. Hair loss hadn’t bothered me too much but this was hard to take. But I couldn’t give up, this was the toughest phase of my treatment, and I had to take it in my stride, as my doctor would put it so eloquently. To cut a long story short, the next few months were marked by extreme pain and fatigue till the last day of my intensive chemo, November 26th. We were exhausted but we still celebrated with whatever enthusiasm we could muster. We hoped that things would be normal from then on, and maintenance therapy won’t be that hard but God had other plans. the next few months were marked by nausea, recurrent fever, and extreme pain. I came down with Malaria and in combination with the after-effects of the chemo, it really knocked me down.
“Why do we fall chubbs? So that we can learn to pick ourselves up”
December, January, and February would be the toughest three months of my life but things started looking up from March. The fever subsided, I gained some strength even managing to go to work regularly. It has been slow and steady but things have been normal for the past couple of months. There has been a lot of collateral damage from the last one year. Nerve, Muscle Pain, and fatigue that I would have to deal with for quite some time while the treatment continues in the background, but for now I am enjoying my new found lease of life. I am grateful that I survived and proud of the fight I put in.
Some thoughts on people
“The thing that makes cancer so dreadful is not what it does to you, but what it does to the people around you.”
During the course of my treatment, I got hundreds of calls and messages of support from friends and family everywhere. The support I got really helped and made me realize that it is important to be thankful for all the care and love you get because not everyone is lucky enough to have it.
In today’s social media age, all of us have hundreds of friends on Facebook, followers of Instagram and Twitter, but the truth is that there are only a handful of people who really care about you and love you unconditionally. These people don’t need any acknowledgment but still…
To Dr. Menon and the rest of the people at Cytecare and Medanta for treating me and taking care of me
To my mother, for loving me unconditionally and for pausing a career she nurtured over 30 years to take care of me
To my partner, Aditi, for being the strong pillar around which everyone rallied and for loving an idiot like me
To my sister, for being everpresent despite being thousands of miles away
To my father, for bearing with my anger and praying for my health every single day
To my family — my uncles, my aunts, my in-laws, my grandparents, my cousins for being so supportive and being there whenever I needed them
To my closest friends who I love dearly (you know who you are), for worrying about me, for being in touch and providing goodwill and strength.
To my employer, for being supportive and patient and giving me as much time as I needed.
To anyone who thought of my well being and said a prayer in my name.
During my treatment, we found this young couple online, they were similar to us, similar background, same age. The only difference was that the boy’s cancer was terminal. They were trying to raise funds online for a clinical trial as a last resort. He didn’t make it. During my frequent stays in the hospital ward, I saw children as young as 3 months and men as old as 90 years old fighting cancer and being delivered chemo. I heard someone cry from lung cancer pain all night, I met a father of three, dealing with terminal pancreatic cancer but still hopeful of a bright future and I heard someone console a patient whose limb was about to be amputated as cancer had spread too far. I saw immeasurable grief and pain but I also saw hope and dreams of a better, cancer-free future.
Cancer is the single biggest equalizer in the world. It doesn’t care if you are young, old, rich or poor. It doesn’t care about your religion, about your caste or your gender, it rains fire on everyone and teaches you to be humble and forces you to understand that you are just a tiny inconsequential speck in the universe, that in the larger scheme of things our existence is insignificant.
You should aspire to achieve, but also be grateful for what you have because it can all be taken away from you in an instant. Instead of always looking one step ahead, try to live in the moment and cherish what you have ‘now’. Learn to listen and be respectful and kind to people around you because everyone has their hell and you don’t know what the other person might be going through. Seek things but ‘give’ if you have more than enough and understand that sometimes giving your time is worth much more than giving your money. Chase adventure but try to find happiness in the mundane. And when tragedy does knock you down, get up, dust yourself down and keep moving even when it hurts. But most importantly, love. Love your existence, love the people who love you and love the people who don’t, cause like the Eagles said: “Love will keep us alive”.