Surviving Cancer: Straight from the heart

It's 8:30 am and I am sitting in my hotel room staring at the scanty streets of Vellore, thoughtless ,waiting to get to the hospital. The gaze often broken by a bout of incessant cough and body pain because of high temperature, something that I had for a month. This, triggering a trail of thought of what could have gone wrong. After a long wait of two hours, it was finally time to go .

As we reached CMC ( name of the hospital ), my gaze only got grimmer, greyer and morose. I could only see a sea of people with tear stained eyes and expressions that were strained of hope. My eyes were probably projecting my own feelings on to the colour of this world. I had to get my blood test done and there was a long que before it would be my turn. It almost felt like a relief camp where everyone seemed to have lost something in life but were yet hopeful. I was eager to get done. It was finally my turn. Because of high levels of dehydration, the nurses found it difficult to draw out enough blood from my veins to get the tests done. They had to poke me quite a few times for the process to be complete. I was irritated, disgusted and I just wanted to get away from that crowd. After waiting for close to 3 hours it was finally our turn to meet the doctor. It felt like judgement day, was it road to heaven or hell?

By now I had begun to feel that there was something seriously wrong , I guess it was my way of just preparing myself for the worst. The conversation that followed next between the doctor and me was as straight as it could get 

Me : Am I dying 

Doctor : The blood results are not looking good. This could be a case of leukaemia. We still need to do more tests but right now it looks like that. 

Me : What is the treatment ?

Doctor : it's chemotherapy ?

Me: How successful is it ?

Doctor : This is a standard treatment ,but we don't know how your body will take it. What about your job?

Me: what about my job? I don't care. If I have to leave it so be it. 

My mom held my hand as I spoke to the doctor. The conversation that followed next between the doctor and my husband is completely blurred in my head. 

My brain had not yet  processed what leukemia actually meant. The fact that the word 'Leukemia' or 'chemotherapy' was linked to cancer was nowhere in the vicinity of my intellect. I just knew I had leukemia. I went back to the hotel and cried my heart out. I was going through a mix of emotions. I wanted someone to tell me that the tests were inaccurate. I felt guilty for making my husband go through such trauma at such a young age. Felt helpless, because I wanted God to give me more time with my near and dear ones. I wasn't thinking about death but neither was I thinking about survival. I was in a state of limbo. I couldn't see my family go through this. Fortunately, my cough was  so intense that I didn't even have the luxury to absorb everything that was happening. All I wanted was to sleep. 

We went back to the hospital the next day  for my bone marrow test. I somehow felt responsible for keeping everyone's spirit high. I didn't want them to loose hope and it is for them that I had to be stronger. As much as I tried, I was a bundle of emotions. On one hand I was still trying to fathom that it was ME going through this test and on the other hand I clung on to every symbol that represented hope like my Rudraksha Mala, my Mantra and the smile on that little bald boy's face, who in the face of his own adversity was trying to lift me up from mine.

The test results were out and it was confirmed that I had leukemia.

We went back to Bombay the next day and I was admitted to Kokilaben hospital. The moment I entered the hospital,for a flash of a moment it was like an oasis, away from web of emotions I was entangled in. The grand chandeliers, amazing decor, a cafe , Internet area, hair salon, classy and comfortable furniture, my room on the 13th floor with its beautiful view of the Arabian Sea , the sun set, of airplanes taking off and landing and  just about everything took me away from my current state. But not for long before reality struck with a triumphant wheel chair staring right back at me.

I was no guest on a leisure trip but a patient. It was so unnatural for me to sit on a wheelchair and be pushed by someone else, when all I'd done all my life was to push my way through to survive an independent city life. I just could not accept it as a part of my identity. The fact that I had to go in a separate lift meant only for 'patients' was not an easy one to assimilate. I didn't want to associate with the others in the lift who seemed more comfortable and accustomed with this identity. This was not my cohort,I didn't belong here. 

As soon as I entered the room, I was given hospital clothes and within a day's time I had an ultrasound done, my heart checked up, been operated on in the ICU for my central line to be set up and for a drip to be attached to me 24/7. The mental demarcations were now physically manifested. I now looked like a patient, and it was there for everyone to see and assimilate. But I could never be one with this identity and it only helped me be more independent, aware and self reliant ( as much as I could be ) throughout my treatment. I had taken control of all my medicines and knew exactly what needed to be had and when. I knew the days I had to be given chemotherapy and was extremely alert while it was being administered. I was ready to fight the disease that put me here today. 

For treating leukemia I went through 5 cycles of chemotherapy where my body was crushed, each time it built itself back again. Pain and body discomforts were my constant company throughout the 6 months of my treatment. For chemotherapy to be administered, a central line was attached to my jugular veins in the region of my neck, each time I came back for a cycle. These were extremely painful surgeries because on most occasions the doctors could not find my veins ( due to dehydration) and had to re inject the anesthesia multiple times since its effect would wane even before the surgery was over. Most of these surgeries took place in the ICU and it was mentally traumatizing to hear the beeping sounds of the heart monitor, see worried faces of  family members and nurses of some patient who was probably breathing his/her last breath. 

My wisdom tooth also decided to show itself during the treatment and there were very cells to manage the pain or its growth.The right side of my face was completely swollen and I could not open my mouth to eat or drink. The pain was so intense that it would reverberate in my ears. But I had no other option but to wait it out. There were also moments of intense pain in the neck and shoulder region because of which I could use one side of the  upper body and had to be  given blood thinning injections everyday.

I had to be extremely cautious of every minor wear and tear in the body. A common issue confronted by most is fissure and I too went through it. Because of low blood counts my body could not repair it the entire 6 months of my treatment and this was an agonizing pain. The pain was so intense that neither could I lie down for long periods and nor sit on a chair. Every little sound in the room , from the opening of the door , to footsteps, to the water flowing in the wash basin would hurt my ears. I could not sleep for days and nights and would sometimes be given anti anxiety pills. I would live on pain killers which had to be given judiciously. These were sleepless nights for everyone in my family. They couldn't see me go through so much pain would be at the edge of their emotions, venting their anger at the sisters in the ward, if they delayed the next dose of pain killers by even a minute. By the last cycle, normal pain killers weren't enough and the pain had to be managed by the pain management department that decided to give me morphin. I was given a self regulated apparatus and once I took the first doze I was in a state of trance. It had been days since I had slept or even known what it would be to have no pain. I was exhausted and slept for a long stretch of 12 hours. My family too was finally relieved. 

However not all days were bad. Life has its ways of maintaining some balance by sprinkling humor, hope and happiness into it. For instance, I had gone for an ultrasound which required me to drink a lot of water and by the end of the test my bladder was galloping and the sensation was unbearable. To save time I had loosened the belts of my pants and was geared towards getting me to the washroom with everything else in oblivion. As soon as I entered the room, I just stood up without realizing that I had loosened the belt of my pants, and right in front of the ward boy my pants fell off. The blanket that I was wearing, fell on the ground and I stepped on it and ran into the washroom. On one hand the ward boy was too shocked to see me in the state that I was in and on the other hand my husband was scolding him for letting the blanket fall on the ground. It was a hilarious moment and we had a good laugh as an after thought.

We also dealt with my intense hair loss by celebrating the moment. I certainly didn't want to cling on to the last strand of hair that would be left of it and decided to shave. I wanted to look fashionable and my husband and parents bought me the most exquisite hats. We took snaps and had a great laugh as I adorned them.  

Right after the shave

Adorning one of the  hats

My room had also turned out to be a great get away destination for my family members. While they would be in deep sleep I would be a silent and ,must I say , a sleep deprived spectator to their loud snores where sometimes one would take the lead and sometimes both would go in unison with equal gusto. With deep sense of responsibility, each would get up and gently remind the other to stop snoring and this continued the entire night. It was sheer entertainment. 

There were also beautiful moments that I shared with my husband. This was one of those nights when I was in intense pain and I wanted Sid to stay over but instead my parents were staying over. I couldn't express myself to anyone ( including Sid) because it would disrupt the entire schedule. We stretched our time together till it was 9:00 pm and visiting hours were over. The moment he left the room I had tears in my eyes, only to see him return in 20 minutes. It was as if he read my face and sat  by my side through the night.  

Among st all this turmoil of emotions of pain, humour , love we clung on to everything that gave us hope. All my aunts and family members would write and recite the Maha Mrityunjaya 108 times everyday in whatever corner of the world they were in, to seek positive forces. I would feel a gush of positive emotions and peace every time I would hear it. 

We also celebrated good food during my intermittent stays at home. It was probably our way to let loose and gather some moments of happiness and re energize ourselves for the next cycle of chemotherapy . Since outside food was not allowed, I had the most sumptuous home made food ranging from Sizzlers, biryani, eggs with cheese, buttered sandwiches , cheese sandwiches, caramelized nuts and everything sumptuous one could think of. We were all on a high on food.

I learnt then, that to be happy, one does not have to try too hard. It's important to naturalize yourself to the present context of your life so that you don't feel out of place in your own world.  There is nothing called pursuit of happiness, it's a state of mind that exists right now, this very moment and we are empowered enough to choose the states that should prevail. 

Being in the hospital, restrained to a single room, with little flexibility to move, since I was on a 24/7 drip, and with limited social interaction was extremely boring. I could not watch a lot of television or movies because my eyes were weak and I would get tired very quickly. The window in my room was my only connect to the external world. I had to keep myself busy to keep all negative thoughts at bay and hence I decided to practice maths. There were also board games like ludo and snakes and ladder that we played. But there were days when I would get anxious about the pace at which time would move. I yearned to feel like a normal human being, walk normally on the streets, dress normally, breath the same air and not air that was cleansed regularly . I wanted to feel the wind in my hair, feel the sun in my face . I wanted to be free. 

The last leg of my treatment was the toughest as it took a lot of time for my blood counts to bounce back to normal levels.  I would wait everyday  for my doctor to walk into the room without a mask and it almost felt like that day would never come. But finally on the 19th of September the doctor walked in with no mask on his face. I knew then that my blood counts were good and it was such a liberating moment. My family too with a hint of hesitation, excitement and acclimatized restraint pulled their masks down. I hadn't seen them without it for close to 6 months. I wanted to open my room windows and breath the air outside, I wanted to walk down the hospital isles carefree without another deadline in my head, without any form of mental preparedness for the next few cycles. This was THE END and I wanted to go home. 

The journey to recovery is not just for the patient but also for the family members. Everyone has to regain that confidence back in life and start shedding the various layers of precaution, fear, extreme mental alertness and extreme care and concern that one gets accustomed to. We are still paranoid about prolonged discomforts such as headache, cough, fever and have to prevent ourselves from thinking of the worst. After all living a life that is just a shade lighter of my life at the hospital was not part of the deal. This is part 2 and it had to be filled with bright and courageous colors.

My friends, family members , employer , office colleagues have stuck with me through the tough times. Never have I witnessed so much goodness in the world as I did then. It seemed as if everyone was rallying for me. They were all tapping the positives force of the universe and I was soaking in all of it. It gave me the strength to fight. I learnt then to  cherish my relationships of whatever nature they may be or however critical I maybe of them. After all, they were my very moorings when life seemed to be drifting away.

Moving  on

I have moved on and lead a very normal mainstream life. I get my blood tests done regularly and each time I look at the report, I feel triumphant. My cells are behaving and I'm grateful to my body and mind for that. I had a baby two years after my treatment and my husband continued to pursue his entrepreneurial dream. No one made any course correction in their life , in fact this incident only reinforced our belief in our ability to deal with any form of calamity and to live life on our own terms. 

Having witnessed the regeneration of life multiple times throughout my treatment, I believe that we are an engineering marvel of God. The human mind probably can't even fathom this genius . Hence we should just abandon unproven notions about ourselves , be on that exploratory journey, be thrilled to know how amazing we are as living beings and pat ourselves on the back for it. 

Writing my story has been a therapeutic journey and I hope to have touched a chord in your heart too. I'd like to thank my family and friends who stood by me and taught me about goodness of heart. I'd like to pass this on to others who are in a similar situation and could be reached through my blog.