Cancer is a very heavy word. It bares its fangs in not only the life of the victim but also affects one’s family, friends and other loved ones—in some cases even more so than the victim.
I too am a bone cancer survivor —an introduction that has found an echo in many interviews, conversations, and memories. I am almost 25-years-old now and will soon be celebrating the quarter-life milestone, yet the memory of my treatment, my experience with Ewing’s Sarcoma is still fresh. As if it was only yesterday that I was wheeled into the OPD for a biopsy.
I was 13-years-old when I was diagnosed with a bone tumor—malignant cancer—when my lower left fibula got affected by Ewing’s Sarcoma. I was in class 8th and was part of the school’s basketball team. I had just started playing competitively, alongside was singing in the choir and was academically doing well too. One might be able to say that I was riding the wave of success.
How naive was I, to not prepare myself, for the wave that was about to come crashing down.
It all began with a lump
Around March 2008, a swelling above my ankle started to appear and began discomforting me. I was suddenly finding it difficult to wear my basketball shoes. It was an oddly placed lump of skin and mass, that pained when pressed.
Well, this oddly placed lump of mass had to be checked. A string of doctors called it an insect bite or just a peculiar swelling and handed me ointments to cure it. But instead, with all that failed diagnosis, I started getting restless. The lump was hindering my game and was increasingly becoming more and more painful.
The funny thing about bone cancer is that you never know enough about it, and half the time you wish that you didn’t know half of it.
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I am writing this story in retrospect, having lived with a proud scar for over 12 years now, a lot has unfolded in this time. There is a constant crippling fear of bearing the pain again—while being aware that the chance of its reoccurrence is as rare as finding a flying rhino, and definitely, nil considering so much time has passed.
There is also a rare knowledge of medical care and jargon that often stumps conversations—talk cannula, cathedra, bone marrow, chemo ports to me. There is also abundant admiration for the ordeal my parents went through—traveling to Bombay (behind my back) to liaison with the best in the country, speaking to doctors in the United States of America to ensure my treatment course was at par, ensuring I got the best they and this country could offer—to make sure I survived this disease with my leg intact.
The mystery of the lump finally got solved
Going back to the treatment, as the norm states, we too visited a barrage of doctors before narrowing down to a recommended orthopedic, who eventually solved the mystery of the lump for all of us. After a series of X-rays and MRI’s and other medical terms, a bone tumor in my lower left fibula was confirmed.
The trauma of treatment
The course of action was spelled out clearly—12 cycles of chemotherapy—3 before surgery and 9 afterward. An invasive surgery, followed by month-long bed rest and the leg to be immobilized by a cast that went up till the hip. And finally, multiple rounds of radiotherapy to ensure the vestiges of a ferocious bone cancer were burned to the ground.
People often ask, how hard was the surgery to bear? I reply I was scared but numb, which means that pain was more superficial and forgettable. It was the repercussions of an allopathic treatment that were the hardest to bear.
A teenager back then, losing the last of my eyebrow and every strand in my head was brutal. Being constipated and in pain all the time was painful. Watching my weight fall from 47 to 24 kgs and yet not having the slightest of will to eat—was scary and painful. Seeing my mother and father run around, without stopping for a second to register their own pain, was painful.
While it was a tough fight, things became more nasty
Yet I persevered and fought on. I drank wheat-grass juice every day to build back my immunity. I wore colorful scarves to hide my bumpy bare skull and often joked about not needing hair removal creams for at least a year. I drank nariyal pani and spent as much time as I could in fresh air. I took care of my mental health and surrounded myself with a world of stories and experiences. Let me tell you one of the stories that stood out for me.
In winters of the year 2008, my classmates were headed to Pondicherry, one of the most awaited school trips of Mother’s International School. I, unfortunately, couldn’t go on that trip. I was taking chemotherapy sessions at that time, which barred me from traveling anywhere. I knew this, I gradually adapted to this new routine. So as my friends departed for Pondicherry, I left for my glucose intake to maintain my hydration and energy. I had spoken to my best friend before she departed and had told her how I wished to be there.
I still remember the day, when what should have been a casual visit, turned into a nightmare. As I finished my drip and prepared to head home, maa suddenly raised an alarm when she saw intense fatigue and loss of color from my face. That night, I was rushed to the ICU at Apollo and was provided with an overnight blood transfusion to restore my hemoglobin count.
Became too grave right? I apologize. Let’s direct this story to a happy ending, shall we?
Well so it goes, the next day with all that fresh blood pumped into me, I was flushed with this new-found energy and vigor. A rare occurrence in this otherwise dilapidated story. If you ask my nurse today, she would recall a frail and fragile girl, with her headscarf covering her bald head, dancing as if there was no concern or chemo cycle insight.
I was feeling rejuvenated after a very long time, blissfully looking forward to my home visit before my next chemo cycle. Unfortunately, Dr. Amita Mahajan (my pediatrician) advised us to stay an extra night for observation. I was furious at this sudden change of plans. I was to return in two days for my next cycle anyway, and one day I felt healthy, I was being asked to forgo my time at home.
I broke down. My anger for being chosen as the faulty one, was responded to by Dr. Mahajan as she took me to the nearby pediatric ward where new-borns dealing with grave ailments were being kept under observation or post-surgical care.
The sight of seeing new-borns, barely a few days old, surrounded by drips and wires, shook me to my core. Parents who barely had a chance to celebrate their child sat huddled around the tiny beds with folded hands praying for a miracle and swollen eyes stating the sleep depravity.
A word of advice that gave me a pump
My doctor turned to me and said, “Chhaya it could have happened to anyone. Yes, it was not fair and yes nobody deserves this but sometimes we cannot control or predict what is planned for us. Where uncertainty determines the course, it becomes crucial to change the way you experience each day. We got to know about your tumor in its nascent stages and were able to clip it from its roots. It could have been so much worse, right? So when you cannot plan your tomorrow, fill today with more life. It is crucial to try and find the silver lining on overcast days.”
It was from that moment, I still remember that I began focusing on not only getting better, but stronger too.
It has been more than 12 years since I have been bone cancer-free. Barring exhaustion, that excuses my leg to rest a few days on the couch, I am your regular adult, trying to figure out life—one day at a time.
These stories became the foundation of all my future endeavors and take on life as well. When life couldn’t be planned so why were we so busy planning it.
I wrapped up my last chemo on April 23rd, 2009, four days before my 14th birthday. As I reach the quarter-life mark, I am grateful for the lessons that will always stay with me. I boast my scar as a tattoo and I talk about bone cancer wherever I go, to make people more vigilant, aware and kind.
Bone cancer was a nightmare. But today, looking back, it was also the most powerful teacher I had. It taught me to never take anything for granted. I am cancer-free and that is something I will never ever take for granted.