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Wednesday, March 31, 2021

2021 A to Z Challenge Theme Reveal


#AtoZChallenge 2021 Theme Reveal

 This is my first time participating in A to Z challenge. I came across this yesterday and realized I am a bit behind the schedule, but then decided to jump into it. Here I am. I had to think of a theme in a hurry.. when I realized I will be stepping into my 26th year of surviving 3rd stage breast cancer. 

I decided to talk about 26 things that has helped me battle and come victorious over cancer. So here I start with it and hope I will be able to complete this challenge and come victorious here as well. 

Saturday, March 27, 2021

#25SilverLinings - Gearing Up For The Battle

 

Gearing Up For the Battle

When faced with cancer, I secretly started evaluating my life and my options. Yes, I had bravely told the doctor that I would fight for my life. I told my family that with treatment I will survive and be there for them, but then I had my moments of doubts as well which I did not reveal to anyone, at least not until now.. 

I started to retrospect my life. If I created a line chart of my life, the line would begin at the rock bottom for me. I was the second girl child born with a club foot to parents who were wishing for a boy. Not a happy event for people to rejoice. My early years were a great turmoil for my parents who wanted to correct my foot without opting for surgery. Happy time was to follow the initial days of gloom which began when I started school. The line went on climbing steeply with my achievements in studies, sports, and art, as I won accolades for my success in almost everything. My dad was very proud of me, and my mom was terrified that I may go crazy pursuing some unachievable target. 

I was a happy go lucky child who suddenly changed in the teen years. I entered a phase of my life where I wanted to make others happy and be a good person. I wanted to be appreciated by my parents/people around me so bad that I gave up my studies, married, and settled down into a life of pretentiousness. I did things I did not want to do, just so that my husband and other family members would be happy and appreciate me. I was not born to be a person I had become in the course of life. What went wrong? I have no clue.  I lived life as though I was surviving a huge storm to pass. I fell into a trance and dissociated with myself. 

Not until the words ‘You have Cancer’  clapped on my ears like a thunder, did that I wake up from the trance I had got myself into. I was standing here on the edge of the cliff, where down there I could fall to my death, or take courage, find a foothold on the slippery ground and steadily walk away into the life which lay ahead of me. This was life’s own test, for which fate had handed over the question paper to me. This was tougher than the board exams, where the answers were already in my head. Here I had to search and find the answers in my heart. I had to write answers to the questions which I had no clue about. 

At one time I started wondering-

What was the life I was fighting for? 

Why do I have to fight for the life where I was doing things that made me unhappy? 

If I would die of cancer, what would happen? 

Other than my children/parents/siblings, who would be affected for long? 

God has given me a beautiful life, but what have I done with it?

I was ashamed to answer those questions, because I had made a mess out of my life. Though a topper in school, I had given up my studies; I was living a conceited life without much care. Moreover, I was so sad most of the time. I was unhappy with my marriage where my husband was not there for a long period of time. Many people were living that way, but that was not the ideal relationship for me. My parents were going through a financial crisis, my sister was going through the last stages of cancer,  my daughter was supposed to not walk, talk, play or study like other children according to medical reports and don’t ask me what else, because the list would be unending. It would have been very easy for me to say, let cancer kill me and free me from all these turmoil.  But then I would just leave behind a mess and die if I did not fight now. A sense of remorse and despair swept over me. Though I do not highlight it very often, it was this mess that made me resolve not to succumb to cancer and die without achieving anything in life, or without doing things that ‘I’ really wanted to do. If everything around me was a fairytale setup, I may not have resolved to fight so hard.

After evaluating myself, I looked up to my children, a 5 year old extremely emotional boy and 11 month old girl with special needs. A vivid image of them as orphans floated in front of me, they were crying for me and asking where is our ‘Maa?’ I could not let this happen. 

Again another image of a bald woman with one breast floated in front of me. Will I ever be a desirable woman after going through the total mastectomy and chemotherapy? I was not sure. I am not sure what makes people so emotionally attached to a part of their body, which is not much useful other than being a sex object. Off course we breast feed our children, but after that the boobs are just sex objects, or maybe I am wrong. The thought of losing the breast and symmetry of my feminine body was very painful even after the internal debate that assured me that breasts are not important, so was the thought of going totally bald. 

As I sat there in remorse, my son walked up to me. He was feeling insecure, scared. He had heard the hush hush talk with my name. When you try to hide things from children it only makes them more scared, it is always better to state things as they are. His look changed me. Moreover there was my daughter who with her innocent smile motivated me to fight for my life. I wanted to live for her and be there for her. There was no way I was going to abandon my special needs child and surrender to cancer, leaving her behind to fight her battle with discriminating society all alone.

I had spoken to my children’s pediatrician Dr. Nandini Mundkur. She made it very clear to me not to confuse Rayyan but tell clearly that I am sick but assure him that I will get well. Hush hush talks will make it more scary for him. She had no doubt about it. 

Farheena could not talk much, but she had become cranky because I had abruptly stopped breast feeding her. She was usually a happy and content child, but now I could see her crying or being sleepless very often. 

 What had to be done couldn’t be ignored because of cancer. One of those things I had to focus on was Farheena’s therapy. When I was dressing up my 11 month old daughter after giving her a bath to take her to the therapy session, Rayyan walked up to us. He looked quite worried and sad. I asked him, “what happened beta?” He did not say anything for a while, but later asked me, “Maa, what has happened to you? Where are you going tomorrow?” It was a day before my final consultation with the doctor to fix a date for my surgery. It was already decided 28th April but he wanted to book the OT and fix the anesthesia appointment, so confirmation was needed from my side. My doctor had given me options of conservation of breast or to go for total removal of breast. I decided to go for total radical mastectomy and my family were very upset that I was not trying anything else before the final decision. 

With that question from my child, my heart landed in my tummy. Those words, that look and the sadness are still etched in my memory like most of the events relating to my cancer experience. He had heard everyone around him talking about my illness; he had seen me go for check-ups, having biopsy, discussing things with my family and had a lot of questions but he had no courage to ask. We elders had decided to protect him from the truth but made the matters worse for him since the unknown is always worse than the worst of the known.

Honestly, I believe moms are one of the strongest creatures in our world. I felt strong and protective at that moment for my son. In a minute I had overcome my shock and shot him one of the most genuine smiles I could bring up. I made him sit beside me and told him that he had to listen to me carefully and ask me to explain anything that he would not understand. I told him that one of my breasts had developed a lump which could be dangerous if left untreated. So instead of removing the lump, I had decided to remove the breast itself so that I can be safe. I was going to get operated on and the date would be finalized, after which I will take medicines that will help me become healthy once again. As I explained everything to Rayyan, I was worried about his response to this revelation. To my surprise he sighed in relief. He exclaimed, “Oh, that’s all? I thought you are going to leave us all forever or something like that”. I casually said, “I feel a bit sad that the doctor is going to remove one of my breasts”. Promptly he said, “It is not like losing a hand, leg or eyes Maa. What do we do with breasts anyway? Farheena can always drink milk from a bottle?”  Those words really lightened up the situation for me and I promised my son that I am going to kick cancer and be with him as long as he wants me. He made a tiny promise on that day that he would help me in everything I do as well. That tiny moment had filled me with a lot of power and strength to fight out anything that would snatch me away from my children. I became too greedy for life. The next day I clearly told my doctor to do whatever it takes to help me survive. I did not mind the quality of life, all I wanted was quantity, more days to be with my children. He looked sad when I said that and replied, “Do not compromise on quality of life. You have to lead a good life happily”. 

When I talk about silver linings, this is one of them. A child who decided to take care of his mom and stood by that promise to this day. His assurance and love shone a bright light from the edges of the dark clouds looming overhead. 

I was not in confusion anymore. My kids were going to have me in their life as long as they wanted me. I promised them, “I have cancer, but I will see to it that cancer will never have me”. With that spirit I kicked myself into fighting mode and started gearing up for the  battle ahead of me. I know, the results are not in our hands, but I was going to fight hard for even a few hours if I could add it to my life.
The child is quite a superhero in my life.... The good part is he knows what he means to his mom.

This girl fills me with great strength even to this day.

Looking at the world with wonder in her eyes... Not knowing how tough it can be on her.

That smile was worth walking through the fire....


Friday, March 26, 2021

#25SilverLinings - Problems, Solutions and Dilemma

After finding out what the biopsy reports said, I walked in and quietly went to take care of Farheena after coming back home. My sisters were both busy with the dressing my elder sister required for the wound the cancer had opened up on her chest. My brother was out. Mom and dad were taking care of the canteen and would come back home very late at night. It was by then that I had to be ready. There were questions I had to find answers to.

  • Who should I share this information with and who I shouldn’t share it with?
  • What will be my husband’s response to the news? He already seemed very upset when I went for my biopsy.
  • What about my parents who were already struggling to cope with my sister’s diagnosis of breast cancer and its progression?
  • Who will take care of Farheena and Rayyan when I go through my treatment?
  • How will I manage my finances?
  • What is the next immediate step?
I usually like to keep my life open, in front of everyone, because I know eventually the truth will be out. Cancer was not easy to hide because I had to go for treatment. Finally I decided to tell it out in open to my family and also call my husband and inform him of the diagnosis. He had left for Dubai when I was pregnant with Farheena. Farheena was 11 months and he hadn’t met her yet. He was already struggling to cope with her diagnosis and also his mom’s death which took place a few months earlier. Life was not easy for him either. Unfortunately everyone was having issues at the time and I could not turn to one person for support.
Everybody had to be onboard other than my children for the time being. Rayyan was just four and I needed a strategy to explain things to him. Farheena was just 11 months and would have no clue. Trying to hide things among people would lead to confusion and more fear which is born out of confusion and fear of the unknown. Anticipating the reaction was hard. I got different scenarios playing out in my mind.
Finally we got together when my children were asleep and I revealed to my parents and younger sister about my diagnosis. My elder sister was asleep as well and I decided to keep her out for time being. My brother already knew. The expected chaos did not take place. They were all very silent. Finally dad said, “there must be a mistake in that report. Since your family history has cancer, they have just assumed it is cancer”. Mom followed by saying, “How can God do this to us? You have two small kids. This cannot be happening”. They all went into denial. I couldn’t get there. For me, cancer was real but I did not think of it to be invincible. I was planning on slaying it rather than denying its existence.
I told them I will have a second opinion and check it out. They assured themselves that I will get to know the truth that it is not cancer and they pacified themselves. Hope can be a boon or a curse!
The next day I visited the hospital again to see the options I had. The BCH&RC had two oncologists residing in its premises because their spouses were working in the children’s hospital. One of them was doctor Murad Lala who I consulted for my options. I was familiar with him though we did not have much interaction earlier. He was a young and pleasant person with a great smile to greet people.
As he sat there reading my reports, I asked, “Sir, what should I do to survive this?”.
He looked quite happy with that question and paused with his reading. He looked at me with a smile and said, “I think you already have done it. You have shifted your focus from cancer to life. The will to live and thought that you can survive this is very crucial in overcoming your condition”.
He went on to say that usually people ask,
What will happen to us?
How long do we have?
Do I have to die?
etc but this was the first time he heard someone so determined and asking what to do to survive this.
We discussed a few more things about cancer and its treatment. I realized that operating on the breast was necessary followed by chemotherapy and radiotherapy. By now, I was familiar with it since dad had gone through the treatment. The doctor told me that he was working in Kidwai. I could get operated there.
I visited the hospital the same day and also another oncology specialized center considering where to undergo surgery. Kidwai Hospital was huge and confusing. There were patients everywhere and most of them did not seem to be doing well. I knew my children would want to visit me and also my parents when I would be undergoing treatment. This hospital would scare the shit out of them….
I discussed it with my daughter’s pediatrician. BCH was a new hospital and there was no rush there. The OT was free and it had enough facilities to conduct the surgery, but the staff were not trained to handle oncology cases. I had my trust in the doctor. He had openly mentioned that his field of expertise was head and neck cancer and also that I would be the first patient he is operating on independently.He also assured me that he would do his best. I decided the children’s hospital was the best option for me because we visited it regularly for Farheena’s therapy and check-ups. So nothing would be new or scary.
I fixed my surgery date to be on 28th of April and informed my husband about it. He had been in gulf for nearly 18 months. He said he will be coming back on 25th April and will be here for my surgery. My parents were not ready for this huge news of me going for the surgery, but they finally agreed. Somehow my elder sister got the news and was devastated. She was worried for my children as much as she was for me. I feel guilty that I caused her pain in the last few days of her life.
Once things were out in the open, days started moving fast. In all the chaos surrounding us, we completely forgot our little silent sufferer, Rayyan. He was confused and scared knowing that something was wrong but at the same not understanding what was happening around him, with his aunt and his mom. I decided to talk to his pediatrician, take her advice before talking to him. The biggest challenge was in front of me and I was scared to deal with this, but I had to. I geared myself up for this with a very heavy heart.

Saturday, March 20, 2021

#25SilverLinings - The D Day - Day of Diagnosis

 The D Day - Day of Diagnosis

As I stand today near the 25th milestone of my journey down lane C, everything behind me appears to be so smooth and clear. Distance and time are great illusionists of our lives. They make everything appear small and smooth.
25 years is not much to consider as a time, but it has worked wonders in allowing me to gain balance to stand steady on my feet, since the time when ground underneath them was suddenly snatched with the utterance of those three words on April 7th 1996. I still feel it in my bones, the mild shivers that ran down my spine, the sweat that wet the napkin in my hand, my burning cheeks and wild heartbeats. It is so etched in my mind that I still remember the Yellow and black sari I wore that day and also the white cotton napkin with yellow bell flowers that lay damp in my hand.
If asked to guess, many would say that it was my reaction to the words “I love you” uttered by some handsome hunk. No, this is not the typical love story because the words weren’t “I love you” but “you have cancer”.
It is funny that our response to the words “I love you” and “you have cancer” are the same. Talk about jokes of our lives. God indeed has a humorous streak in him, and so do I, but it did not surface at that moment.
The comparison with romance and love ends here since the initial rush was followed by a silent numbness in place of a passionate kiss.
I don’t remember how long I sat there in front of my doctor waiting for him to say something, but he just waited for me to reply. It is one of those times of our lives, when time loses its importance and meaning. Hours may turn into minutes and seconds may look like hours. I said ‘Thank you sir’ and the doctor looked puzzled since he did not know what I was thanking him for. Nor did I know why I was doing it. Must have been a habit… I needed time to process this new information so I walked out without further discussion.
Flashback -
Just a few days ago, I had no clue that I had cancer growing in me. I was breastfeeding my daughter who was nearing her first birthday in a month. I was worried about the milestones which she hadn’t reached. One big relief at this moment was that she was able to see things around her which she couldn’t earlier. It was in mid February that she started responding to visual stimuli. Lost in my thoughts about her future, I was checking for milk to feed her when I felt something different in my breast. It was as though a small pea had been inserted in my left breast. It kind of gave me a scare.
My sister had found a lump in her breast 2 years ago, and it turned out to be breast cancer later. The cancer had progressed in her. Lumps were scary. But then I brushed it off. I thought it must be clogged milk duct, a problem I had faced earlier or must be the effect of working hard in a canteen I was running back then in a hospital. Even though there was a bit of fear peeking somewhere, I rubbished the thought that it could be cancer. Dad had been diagnosed with cancer in 1992, my sister in 1994 and now me in 1996 looked absurd. Such things don’t happen to a single family.
Few days later, while having a bath, I remembered the pea sized knot and checked it out by applying soap and lifting my hand up over my head. I could feel it very clearly now. The tissue was nothing like something I had in my body. It felt as though a pea with rough bony edges had been inserted into my breast. If this was a movie, then I would have heard the loud drum beat indicating something wrong was going to happen. As this was real life, all I heard was my increased heart beat and tricking of water and sweat on the bathroom floor. I felt scared and weak, as I knew this was not right.
I was getting ready to take my daughter for her physiotherapy session, so I pushed the thoughts of lump aside. When in the hospital, I brought up the topic about the lump with her pediatrician. She felt it and immediately ordered me to consult a surgeon who was on a visit to the hospital.
. I did. He was a man of less words. He said “It looks suspicious. I think it is better to get it removed through biopsy and send it for a test in the lab. We can do FNB or small surgery to remove the lump itself. Since you are breastfeeding your child, I would suggest you remove the lump and stop feeding your child on the left breast for the time being. It is OK if you start weaning her off from now”.
WHAT? For a moment there I felt he must be joking. But this elderly man did not look like someone who would crack jokes.
At that moment I wasn’t thinking much. I just went through the procedure as though I was in a dream. In two days time, I set it up for a biopsy with local anesthesia with the surgeon and walked home after completing Farheena’s physiotherapy session. Casually I mentioned it to my family and suddenly all the hell broke loose at home. My family panicked but then everyone calmed down and said it must be a milk duct clog.
Two days later, I walked alone into the hospital. People at home were confused since someone had to be with my daughter, someone had to take care of my canteen, besides my sister was going through metastasis and was struggling a lot. She needed care both physically and emotionally. Our family was on our own. My sister’s husband was in Qatar and my husband in UAE. My mom, dad, brother and sisters were all I had and they needed support at this time. I had to be strong. So, I decided to handle things alone quietly without disturbing anyone.
I was awake through the procedure when the lump was cut and removed from my breast through local anesthesia. I got a few sneak peaks at it as well, since I have always been a curious cat. The lump was put in a small bottle with formaldehyde and handed over to me to take it to the lab. It was the time of landline phones and our phone connection was not available yet. We had newly shifted this home. So, I arranged for my husband to call me on the landline number in the hospital after the biopsy. I scared the receptionist with the bit of my breast I was carrying with me. She shrieked, “OMG, how can you just walk so cool with that thing in your hand. Please don’t give me another shock like that ever……..ever”. I mumbled, “Oh, I am so sorry. I thought it was normal since this is a hospital”. She looked aghast and replied, “No, people do not carry their own body parts as though it is a candy. They have someone with them to do it. Why have you come alone? Why is no one with you?” I had to calm her down and make her sit back on her seat.
By then the call came. I had a tiny chat with my husband, who was talking in high pitch. I couldn’t make out much of the message but I could know he was tense and was not going to be emotionally helpful. Somehow the wiring in my brain started to make adjustments for things to come. High pitch sounds are good at rewiring our brains.
The specimen was given to the lab. The reports came .. Now you can go back to the scene that I mentioned earlier. After sitting out for a few minutes, while the doctor attended another patient, I walked back in. The doctor confirmed that I had breast cancer, in stage 3, possibly some lymph nodes are involved. At this, I was wondering who is this lymph node? It is amazing how doctors assume everyone knows the terms they use. He further continued that I had to consult an oncologist for further procedures. Somehow my brain had processed this but remained in denial as well. Now there was no room for denial. This was the D day- The day of diagnosis. Cancer was here. I was connected to Cancer from today. My life would change drastically from this day. I wasn’t sure of anything anymore. I was still in confusion. I walked out and went home carrying with me a lot of questions for which I had to find answers.
a Christine Ceglia and Sweta Tiwary
Rayyan with Farheena - being her protective brother. Poor guys had no clue what awaited their mom.

May be at this time I had teeny cells of cancer growing in me..
Farheena was with special needs. But, I was unaware of all this.
Here I was trying to capture us when Farheena arrived home
to share the picture with my husband who was in Abu Dhabi.





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