SJ (Ewing’s Sarcoma): “From a Patient to a Warrior”

SJ Ewing's sarcoma cancer survivor

Diagnosis/Detection:

Life is full of surprises, some that fascinate you while others just leave you baffled. I was the usual next-door teenager enjoying her life, unaware of what harsh circumstances were on the way ahead. I was particularly interested in sports and was a State level Kho-Kho player and District level basketball player. It was a pleasant September morning (Year-2006) when I had gone for a regional basketball tournament with my team. While playing the game, I felt some dizziness, which rendered me unable to play.

 

After reaching home, I told my parents the series of events, and then my father took me to a local doctor. The doctor sensed something hard near the left kidney, so he prescribed some medicines and ointment for the same. I did the prescribed treatment, but it was of no use. My symptoms were getting worse, so we decided to take a second opinion. This doctor suggested some tests, and we got them done. However, when we got the reports, they were hinting at something else. The doctor advised my parents to take me to Delhi and consult specialists there.

 

So for further diagnosis, my father took me to Delhi. We consulted doctors at Max Hospital, Apollo Hospital, Rajiv Gandhi Hospital in Delhi, and also took an opinion from Tata Memorial Hospital in Mumbai. After a series of consultation and diagnostic tests, I understood that I was diagnosed with Ewing’s Sarcoma – Stage IV (PNET – Left Kidney). My life turned upside down in just a span of a few days. I was 15 years old and was unable to comprehend what was going on. One day, I was playing basketball, and a few days later, I had advanced-stage cancer. So much happened in such little time. My doctors explained in advance that the prognosis at this stage is not so good, and there are very slim chances of survival. There were varied reactions from my family; they were too scared of the uncertainties and the worst-case scenarios. On the other hand, I accepted this challenge with a welcoming smile and was determined to be a fighter.

Treatment:

I took treatment from Rajiv Gandhi Cancer Institute and Research Centre, New Delhi, which lasted for a year. I underwent a total of 16 cycles of chemotherapy and one major surgery (in which doctors removed my left kidney). My chemotherapy sessions alternated between cycles of 2 days and five days. There was a gap of 21 days after each session. Initially, the doctors were unsure about the effects of chemotherapy since cancer has already metastasis to 4-5 other organs of the body, including kidney, liver, and lungs. Still, luckily, my body started responding to it. After my fourth round of chemo, the doctors advised a nephrectomy (removal of kidney) since cancer invaded the majority of the kidney tissue.

 

Although chemo was working, it came with its own side effects. The medicines used for chemotherapy were given through an intravenous cannula. The process of inserting and removing the cannula was equally painful in all the chemo sessions. The repetitive insertion and removal of needles and cannulas blocked most of my potent veins, and thus even the threads of my leg ended up getting poked. The veins would swell up and turn black after the chemo because of the repetitive infusions.

 

The medicinal dosage is quite heavy and takes a toll on your physical as well as mental health. I was losing my hair, and I had ulcers in my oral cavity as well as in my throat. My appetite dropped tremendously, and I shifted from eating food to forcing it down my throat. Nausea and vomiting were often unbearable. The mood swings made it even worse. There were days of anxiety, uncertainty, anger, and so much more that cannot be put into words. My White Blood Cell (WBC) count went drastically down after each chemo causing extremely weak immunity. Some special kinds of injections were given to me for five days after each chemotherapy cycle to increase WBC count. All I could do was to keep myself calm and composed rather than focusing much on the adversities.
I had already lost one session of schooling during my treatment. So I didn’t want to lose another year of schooling; therefore, I continued my studies and schooling during my chemotherapy to keep myself occupied. Delhi is around 1200 Km from my place, so we used to come to Delhi for my chemo and then head back to my home town. In the gap of 21 days after my chemo sessions are done, I used to attend my school.

My Support System:

Undoubtedly, the patient has to face the worst, but everyone around the patient also has their own share of struggles. I feel blessed to have such people who stuck with me through thick and thin. My family supported me a lot, especially my grandmother and father. They stood by me like a pillar. Also, my bua and her family members supported and encouraged me since we used to stay at her home in Delhi during my treatment period.

 

The journey from being a Childhood Cancer Patient to a Warrior (proudly to be called as a warrior instead of survivor) would be incomplete if I would not express my gratitude towards the doctors at Rajiv Gandhi Cancer Institute and Research Centre, Delhi – Dr. Gauri Kapoor, Dr. Sandeep Jain and other doctors (whose name I am not able to recall) as well as towards nursing staff and other supporting staffs of the hospital who gave me a new life. I am also deeply indebted to teachers at my school and college, who helped me a lot to cover up my studies and enabled me to stand at the place where I am today.

Life Post Treatment:

I have faced that there is still a taboo about sitting, talking, and telling everyone that I am a survivor. When I was diagnosed with cancer, I was in 11th grade. I repeated Grade 11 because I could not attend the school during my initial chemo sessions. By the time I joined back, most of the students and teachers knew about my diagnosis, and they were quite supportive. However, life wasn’t so similar in college. My college was in my hometown, so people frequently came to know about my diagnosis. There were people with preconceived notions and myths that cancer is contagious. I would often overhear people talking about me, how I would not survive for more than six months, and so on. Yes, it was hurtful and extremely depressing, but I didn’t let these people or their opinions affect me. I was determined and was very clear about what I wanted to do in life.

Cancer Support Groups:

Many cancer support groups are providing psychological and emotional support, but in 2007 during my treatment, I didn’t know any such group. During childhood cancer, children are not that strong, and they don’t understand much about the condition they are going through, so this is the main reason why such support groups are vital for them as well as for caregivers.

 

Whatever experiences I had during my journey from being a patient to a warrior and then to the place where I am standing today, I can say that during the treatment, 50% of medicines and 50% of emotional and psychological support, including our inner mental strength and other habits work.

Spirituality:

After my treatment, I questioned myself that I lost so many things during the treatment, but What did I Win? The answer came from deep inside that I won back my life – the most precious thing. There were many other factors, including some unknown powers, which helped me to cure everything, and that was my first experience with spirituality. I am grateful to my God and my Guru, who gave me the strength to fight and come out beautifully. I believe that some powers are beyond nature which constantly guides and help us to go on the right path in our life.

 

I read a book named “SHAKTI,” authored by Rhonda Byrne, and after reading this book, I came to know about the essence of life. It changed my perspective of looking at the world. The book tells us about the law of attraction – the strongest law working in this universe. I learned that whatever you think, it gets attracted to you, and the same worked for me as well. And trust me, it did wonders for me. Today I am a happy girl living every day with enthusiasm and zeal to learn and live more. The incident that was supposed to be a tragedy turned out to be a blessing that changed my life for the best.

Cancer: My Motivation (A Turn Around)

I was 15 years old at the time of my treatment. So basically, I’m a childhood cancer warrior. Being a warrior has been a unique experience for me. I had a virtual handshake with death. This experience has transformed me in such a way I had never envisioned. It is a lifelong experience for me – which has one side full of fear, pain, mental breakdown, and the other side inspires me to give my best in every scenario of life. It has taught me that life is full of ups and downs. So whenever we have to face problems, we need to face it with a strong willpower and optimistic attitude to come out as a better person.

 

Whenever in my job profile or any other phase of life I get demotivated, I start remembering that part of my journey and say to myself that when I had already coped up with such a difficult situation where cancer has already spread 4 to 5 other organs of the body including kidney, liver, and lungs; then I can fight with these little daily life battles also. I have been gifted with second life and learned that second chances are hard to come by. So I have resolved to make it count.

 

I moved forward in my life after treatment, according to my interest. After treatment, I got 88% in class 12. During graduation, I was in the top 5 of my degree in University. Also, I am a gold medallist in M.Sc Chemistry. With all my hard work and blessings of God and my elder ones, I cleared more than ten different competitive examinations. I started preparing for the State Public Service Commission (State PCS) Examination. With the grace of the almighty God and blessings of my elder ones, I came out with flying colors by clearing the examination mentioned above consecutively for two times in both attempts with State Rank 40 and 17, respectively. Currently, I am posted as an Assistant Director under the Finance Department of my state. I was also selected for the post of Chemist in the State Pollution Control Board by securing 5th rank all over my state.

 

So, if I can overcome these hurdles of life and can perform better, then everyone can do it. For doing so, every individual must realize their potential and should move forward according to their interest and talent. Today, I am happy and satisfied with my life. My past constantly strengthens my present life that after going through so much, many good things are happening to me, and everything is going fantastic. Life cannot be more beautiful as I am having after the cancer journey; that phase has made me much stronger than I was before.

Parting Message:

I want to tell everyone to follow a healthy lifestyle, do regular physical activities, take a balanced diet, and avoid stress and if it’s there, then go with Yoga and Meditation. Tough times don’t last long. There will definitely be many obstacles in the journey of life. But still, we have the power to cope up with every situation of life – the need of the hour is just to recognize that power. This journey has taught me to appreciate even the smallest thing in life and to enjoy every moment of life. A positive mindset makes all the difference, so always be positive and positively live your life.
“Life changes beautifully in a very positive way if you allow it to.”