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Prateek (Glioblastoma): Are Patients Victims Or Fighters?

Prateek (Glioblastoma): Are Patients Victims Or Fighters?

The symptoms

The terms "sometimes and "something can imply both the positive and the negative. In my story, you will see that both these terms are used very commonly. Sometimes we win, sometimes we lose. And who knew that sometimes an asymmetrical smile could be due to cancer. My dad had an asymmetrical smile, which was beautiful. My mom, a close observer, noticed this change over the last 2-3 months. Who could stop her? And her observation led to many unanswered questions.

My sister and I usually come home during Diwali, and mom told us about this strange problem that dad was experiencing for quite a bit now. We both were unfamiliar with this kind of disease (Should I call it a condition?). Every Diwali, when we come home, it is always like a fairyland at home. But in that one moment, when my mom disclosed something like this, the excitement vanished into thin air. Even though it wasn't something that any person would worry about, it still created uneasiness. It sounded strange and eerie.

As my sister was preparing for MBBS, we were delighted when she said she had friends in AIIMS, and one of them was a neurosurgeon. "Why did we particularly think of a neurosurgeon? I can understand if this question popped into your mind. To answer this, we thought that it could be something as simple as a nerve getting pressed and resulting in an asymmetrical smile. It didn't seem like a significant issue to the neurologist, but he still recommended an MRI to reassure ourselves that it was not a serious condition.

We also checked with several neurologists in Allahabad, where I stayed. These neurologists could not answer our questions about "what and "why, and they couldn't diagnose the problem. Some didn't even recommend an MRI, but we kept pushing forward. We wanted to know more about the problem before it could cause severe harm. Even after learning that it may not be a huge problem, we wanted to confirm, and that is how we got the MRI done.

Glioblastoma Diagnosis

The reports shook us. I wasn't able to figure it out myself, but I had to act consciously and intelligently. It was a tumor on the right front lobe of the brain. I did not know how it happened. During moments like these, you always begin to recall moments of the other person being fit and healthy. My numb brain started flashing memories of my dad playing squash. He had been a state champion in over 40 categories- an active, healthy, fit man just a few months ago. He had started complaining about weakness in his body, some power that was taking away all his sportsmanship. He probably thought that it was because of his increasing age. He had never suffered any fever, seizures, confusion, or any other symptoms.

The tumor was right near the motor functions, and that's why the left side of his body became a little weak. The symptoms were there: he got slower on the squash court, and he had an asymmetrical smile. The smile was what led us here. We went to the hospital and consulted the doctor there. He recommended Surgery because the tumor was almost 3cm. It was definitely not insignificant. In no more than one week, I saw my father lying in the operation theatre. We did not want to delay it any further. Before the surgery, we were optimistic that the tumor would be benign, and this Surgery would be the end of the treatment. The doctors usually reveal things very heartlessly, so the doctor said to us that there was a 70% chance of the tumor being cancerous.

The operation was successful, and I was eternally grateful to the Almighty father-figure. My father received the best postoperative care, and the MRI scan showed no signs of the tumor. His body, being preserved and maintained exceptionally well over the past 54 years, recovered much faster than anyone had anticipated. But we didn't realize that there was something more to this.

When Biopsy reports came, we all felt extremely hopeless. Everything seemed chaotic and uncertain. We found out that my father was diagnosed with stage 4 glioblastoma (GBM). All his symptoms started making sense now. Receiving this information was too much for our minds, but we had to keep up our spirits to let my father know that he would be alright.

Glioblastoma Treatment

My sister and I are knowledgeable and well-informed people. We knew from the very beginning that prognosis would not help us. Thankfully, we did our research. We started looking for other treatments as we did not trust allopathy. But after long hours of debates and discussions, we had to opt for Chemotherapy. We realized that this was the only treatment that could help, and we barely took time to decide that this would best suit us for the initial stages.

My dad had to experience everything we feared - six weeks of Chemotherapy and radiation. It continued again for another six months. Thankfully, he did not have any fatal side effects. He occasionally felt constipated. We were following regular MRI scans and x-rays and everything that was needed. Everything was normal and clean until August 2019. Once again, my father's fate changed.

Glioblastoma Recurrences

August 2019 became the month we never wanted to see. We started to notice signs of tumors again, and we could easily name it "reoccurrence. During all these times, the herculean challenge was to keep my parents emotionally healthy and mentally sane. We started to tell them incomplete things while we (my sister and I) knew everything. But sooner than later, they had to come across all the facts like life expectancy, treatment, etc.

Recurrent tumors could only be dealt with through Chemotherapy and maybe some other kind of radiation. He did undergo a second round of all the three treatments- chemotherapy, radiation, and the Surgery. While we had faith in the surgery, we did not want to try the second line of chemotherapy, which is still in the experimental stage, as it could significantly hamper the quality of life.

Things started to worsen after his second surgery, and suggestions regarding getting a cyberknife therapy began to pour in. It did not go well for him, and this took away the last bit of our hope. It was decided when his wound wouldn't heal, and his skin became dead.

Later the infection started to spread further into the brain, and in January 2020, doctors began to talk about his third Surgery. It was becoming hopeless and depressing for all of us. We put our foot down and decided against a third Surgery. Until July, everything proceeded normally. His treatment was intact.

But in August 2020, the third recurrence happened. We scanned the periphery, and we could see a lot of edemata. He had his first seizure. This was the only symptom left, and I couldn't be more depressed. Challenges were in the queue, and the first one is creating awareness and understanding the seriousness of this situation. The primary challenge was maintaining emotional balance in the family. My wife, sister, brother-in-law, and I started witnessing his worsening condition and increased Pain. At that moment, we realized that prognosis would not help anymore. It was a challenging journey; cancer always is.

Parting Message

Cancer can happen to any normal human being. It is always uninvited and unwelcome. But what we need to decide is, "Are we victims or fighters? Putting your best efforts to treat cancer can help instead of lamenting the patients as the victims. Of course, there will always be anxiety, and everything else will seem unimportant. But when we begin burdening ourselves, it becomes worse. I encourage people to watch "Pink. This movie intrigued me and helped restore all my senses.

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