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

By Payel Bhattacharya, living with von Hippel-Lindau syndrome

I, Miss Payel Bhattacharya, was an unusual child. I was never concerned with petty things, the trivia, the dregs in life. My tangential connections with friends and relatives left me isolated but I was blessed with a wonderful mother. I grew up in the shadows of my Wonder-mum, my extraordinary mother who helped me wipe out the bad memories and realize the beautiful, prettier side of life.

I was born into a privileged family but those unfeeling relatives, when I needed them most, the foxy ones conspired against me so that I did’t get my rightful inheritance in a time of great need. They were ready to let life eat me up like a cat eats a canary and allow me to meet my death. As for the other relatives, the rabbits turned tail and fled fearing I might ask them to help me or stand by me.  But I didn’t despair and kept looking for hope and I found hope amongst mankind not tied to me by any blood bond. It is their combined effort that pulled me out of death’s grip when I needed a landmark liver transplant to save my life. It was then that I was diagnosed with a disease known as VHL or von Hippel-Lindau.

Von Hippel-Lindau disease (VHL) is a rare, genetic multi-system disorder in which non-cancerous tumors grow in certain parts of the body. Slow-growing hemangioblastomas — benign tumors with many blood vessels — may develop in the brain, spinal cord, the retinas of the eyes, and near the inner ear. Cysts (fluid-filled sacs) may develop around the hemangioblastomas. Other types of tumors develop in the adrenal glands, the kidneys, or the pancreas. Symptoms of VHL vary among individuals and depend on the size and location of the tumors. Symptoms may include headaches, problems with balance and walking, dizziness, weakness of the limbs, vision problems, deafness in one ear, and high blood pressure. Individuals with VHL are also at a higher risk than normal for certain types of cancer, especially kidney cancer.

This was a regrettable incident though because it killed my father…not because of the transplant itself, but my cunning uncle who took our house from us. In order to save my life, my father couldn’t afford his own bypass surgery and expired, leaving us penniless and homeless, for my sly uncle took our house by crafty means.

Surprisingly after his death my cogs and circuits malfunctioned, and time cheated on me. I needed those life-saving anti-rejection medicines and acquired the infectious consumption disease(MDR-TB) under suppressed immunity within a month after his death. Strange feelings came over me and it seemed lonely sitting in those unhygienic shack-like houses. Now, after a few years sitting in my chair it seems odd that I survived 15 surgeries and radio-surgeries under such bizarre conditions.

My mother’s belief and boundless energy sustained us as we not only faced shocking poverty (we didn’t have money for food the next day) but I also overcame MDR- TB and its expensive treatment. While this was going on, I also had two sessions of radiation therapies (in my brain for extremely rare leptomeningeal hemangioblastomas) which went on for six weeks, one cyber-knife surgery, and kidney cancer. Resection for these numerous tumors can cause excessive bleeding and tumor cell spillage thus non-invasive procedures with little blood loss has proven to improve the quality of my life thus far in my case. Whenever any of these multiple tumors become symptomatic or starts growing they are contained by radiation. Sometimes they start shrinking little by little after some time.

All my life-saving surgeries and treatments and diagnosis happened at the nick of time. I’ve had numerous surgeries, including a thyroidectomy which led to hypocalcemia due to low parathyroid hormone levels. We get by with arranging all those expensive immunosuppressing (anti-rejection) medicines for the liver every month along with lab and radiological tests with the divine power helping us because we don’t despair.

Strangely enough, I became something of a connoisseur of the bizarre and the grotesque which led me to write the novel Midnight: A Thrilling Novel. I haven’t forgotten my past because my struggle hasn’t ended. When those fateful memories turn up, I start remembering extra but my mother channels bottomless energy and I start writing and spinning out tales. This is how I became an author. I can’t get back to my childhood where I never enjoyed the hop-skip-jump of those days.

I survived kidney cancer. One of those malicious tumors sitting atop my optic nerve in the brain makes me partially blind. Not even those killer sessions of radiation therapy could shrink it. Those tumors, especially the nasty ones popping up in my brain, makes living every day a constant fight.

A few days ago, a new chapter started in my life story. It was a warm October morning and I was in a merry mood having a good time because of the approaching Durga Pujas. I always try to make most of the time with my mother. The season is very inviting and makes us happy and less anxious. I sat down with a book, determined to enjoy it thoroughly, but suddenly out of the blue something zapped across my right eye.

The jolt of lightning appeared repeatedly. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. This continued for the next few days, but the pain was gone as abruptly as it appeared. I underwent an MRI scan. A mess of nerves was found in my brain which was causing the symptoms. I am now fighting bilateral trigeminal neuralgia, which is characterized by a sudden, recurring stabbing, electric current-like pain. Bilateral presentation is rare. It is also known that it has something to do with an artery being near a nerve.

 

To Be Continued in Part Two

 


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