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

Continued From Part Two

Written by Payel Bhattacharya

 

I hope for aid from the government to cover the high cost of subsequent medicines including anti-rejection medicines, radiological and lab tests required for brain radio-surgery, liver transplant, and kidney cancer. Since it is impossible to predict how the disease will present or progress, active surveillance is exceptionally important for people living with VHL.

Treatment for VHL varies according to the location and size of the tumor. In general, the objective of treatment is to treat the tumors before they grow to a size large enough to cause permanent problems by putting pressure on the brain or spinal cord. This pressure can block the flow of cerebrospinal fluid in the nervous system, impair vision, or create deafness. Treatment of most cases of VHL usually involves surgery to remove the tumors before they become harmful. Certain tumors can be treated with focused high-dose irradiation. Individuals with VHL need careful monitoring by a physician  familiar with the disorder.

I think one shouldn’t believe in a doctor with one’s eyes closed. Rather, be aware of what one is facing and the right doctor can definitely treat the disease. Dr. Arvinder Singh Soin didn’t say transplanting the liver will cause the tumors to grow once again and it will be a futile effort. Dr. Randeep Guleria cured me of MDR TB, which other doctors couldn’t, and because those doctors failed I can’t walk properly and I still need the help of a stick to walk. Dr. Sanjay Gogoi understood before taking out the cancerous tumor in my kidney that doing fine needle biopsy could spread the cancer to other parts of the body. Similarly, Dr. Sankar Vangipuram understood the risks of MVD surgery on a leptomeningeal hemangioblastoma patient.

Our destiny is not always determined by what happens to us, but rather how we react to what happens. The outcome of positive attitude is always positive thoughts which eventually lead to positive events. Life for me is a challenge to be met with courage. It is a game of skill with an element of chance. Life comes to a standstill if you give up hope; thus from desiring to live she fought on. Like Asterix and Obelix traveling the untrodden track, I jest with Mum about the crazy Romans we met in our lives.

 

Journey Through the Gravelly Road of Life

 

I make my own roads,

Every stone on the way has a significance,

If I trip I gain more experience,

My remembrance

Helps me to use my diligence,

To make my road better.

To tackle my sorrow,

So that my eyes don’t get wetter,

Thus building a brighter tomorrow.

Without hurt, without tear,

Without pain, without fear,

Without despair,

Where everyone will care for each other,

Angst and pain will disappear.

Everyone will love one another.

 

I wrote my entire autobiography, which is about my struggle in crossing a thunderstorm amid thunderclaps and heavy rainfall with the help of those who felt an immediate and deep connection with my struggle. I named it A Warrior Dies Dancing…That’s Who I Am. Some people found it funny but my explanation is that life is a joust where the opponent you are riding against is death. When a seasoned warrior steps into the battlefield fighting valiantly, she delights in the spirit of it and it’s glory.

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. Before we are inevitably visited by the death and thrust to total chaos, a warrior’s mind gracefully dances to the rhythm of the music of creation and life. Thus, A Warrior Dies Dancing, That’s Who I Am… The upshot is life belongs to us but we belong to death; meanwhile, dance away the time you get.

I also wrote The Adventures of Mum and Princess which is a really thrilling book, unlike the deadly one you just read about. My war is still going on.