Warrior Princess: Fighting a Rare Disease Under Unprecedented Circumstances, Part Two

Continued From Part One

written by Payel Bhattacharya

Pharmaceutical science has medications to control the pain.

I was initially put on medicine but it mostly didn’t contain the pain. I had fleeting jabbing pain which would fade away in at the most a few hours. Pulses of electricity traveled through my cheeks. Doctors upped and upped my dosage, but I was not satisfied.

This vascular malformation, this nerve impingement on the right-hand side is a part of my syndrome. I asked for  consultation on less invasive procedures like cyber knife, but I was told that only a MVD surgery would work. I went somewhere else for less invasive procedures like damaging the nerve fibers with a heated electrode known as radiofrequency lesioning, where an electrode is inserted through the foramen ( hollow or opening inside the skull). I also asked about gamma- knife, where beams of cobalt 60 radiation are used to damage the nerve. There it was confirmed by the doctor that the left-hand side pain which is milder than the right-hand side is due to an artery being very near the nerve. Thus I have bilateral trigeminal neuralgia. The trigeminal nerve has three branches: ophthalmic, maxillary and mandibular. According to the doctor it is rarely seen that bilateral trigeminal neuralgia with pain in all three branches on both sides.

A new medicine was added to my list which made my blood pressure drop instantly with the intake of the first pill.

I had a feeling of history being repeated. When my father was alive he went to most hospitals across India for my growing brain tumors, which were causing partial seizures. But I was told these very words:

“Come at the last moment when the tumor grows to the size of a Deus ball.”

It was also added that there was a chance of getting paralyzed for life. I didn’t want to be a guinea pig. But the major thing which happened is after the medicine was added my blood pressure plunged down. I have tachycardia and high blood pressure most of the time.  I take medicine for that. I stopped the medicine and drank lots of fluids but to no avail. The doctors persisted in their decision of choice of medicine. They keep commanding in a military-like way that I need to take those medicines and my only respite from the overwhelming pain is the MVD surgery. I wanted to avoid the surgery because of my rare condition; why don’t they understand that? I presume this is all due to a lack of awareness. How many of us know that the 28th February is celebrated as Rare Disease Day all over the world? Hardly a handful of Indians do.

All my life I have kept looking for hope. I have undergone 14 surgeries including cancer and a few life-threatening ones but I have never stopped hoping. Hope sustains us. I got this hope from Dr. Shankar Vangipram of HCG Khubchandani Cancer Center Mumbai who said he could treat me by cyberknife radiosurgery. In a Cyberknife, a 6 MeV linear accelerator is mounted on a robotic arm that moves around the patient and fires radiation from different angles. The patient is immobilized but does not require a frame to be screwed to the head.

 The soul of the warrior honors the cosmic spirit. A Warrior fights the battle of life —all its dreadful possibilities without a whit of fear, without thinking that it’s unfair. My trust in the cosmic spirit, who created me and my will to enjoy this beautiful world with Mum, where little birds still sing on the trees and there is still warm sunshine waiting for me, made me bold enough to fight the cruelty of the pain gnawing into me and destroying my life.

I got support and kindness and the cyber knife on the right side– the most painful side happened about a month ago and we returned in time. Within four days of the nerve being shot with high dosage of radiation to destroy it, I wrote this poem To make people come to terms with the reality of COVID-19:

Fall of The Contagion

 Mind is a powerful weapon they say,

Where knowledge is the mainstay.

As the catastrophe happened,

Prepare, be aware,

Avoid public places,

Refrain touching faces,

Life is not unfair,

Soon days will be brightened.

In jeopardy may humans stand,

But by maintaining distance,

Not traveling to any distant land;

Ensuring safety of the vulnerable,

Being responsible, together we stand.

Isolation is not perdition.

Not being utterly hopeless,

Being cognizant;

The turf is uncertain;

So is the terrain; 

Can bring nemesis of pathogenesis.

The sinister brute would cast off its crown,

As time frown,

Monsters, cruel, fierce and base;

Causing deaths of life-forms

Would decay and fall,

Die a death approved by all.

I can’t speak about my entire pain while typing the lines of my books with my one-eyed vision. There with swelling in my eyes and eyes which felt like on fire with tears streaming down. There was pain at the back of my head and ear. The pain hasn’t entirely gone, but in a month, I can say I am 80% better. Pain comes back a little with weather changes or emotional strain, or remembrance of life spent in great duress; or thinking about life’s wrongs, mistakes, miscues, misunderstandings, and muddles. But when thoughts try to destroy the peace of my mind or cause pain, I think of something else—the times I enjoyed with my mum.

I can’t let it happen like before when I could just remember taking painkillers apart from the medicines I was on. But still, the pain remained. The agony of the soul as it shrieks in pain was indescribable at night. I know everything will eventually fall in place. Albeit there’s a problem with stiffness in the neck muscles and trouble swallowing, but that can be solved by practicing a few neck exercises and swallowing food with a sip of water. Still, thoughts about getting cyber knife of the left side remains. After all, nothing can be completely accurate. All which is needed is a good doctor who is thinking about your health and happiness and not treating you like a guinea pig and thinking about more than his own good and fame. I got the opportunity to choose between good and better doctors four times in my life: during my liver transplant, my MDR TB treatment, kidney cancer, and trigeminal neuralgia.

To Be Continued in Part Three


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