Death with dignity

Since I didn't get any happiness

 Neither in the start

 nor in the middle

 So let's end it.

Tells my stinging, smarting, thumping heart!

I appeal to Prime Minister Modi, Chief Minister Arvind Kejriwal, and Atishi Marlena, Chief Justice to either provide me with proper treatment so that I get back my strength or as Nazis have started ruling the medical world, kindly do a Mercy Killing. I am not going to be without treatment in bed with headaches and the inability to swallow and other problems for more than a week.

I, who swam the seas with vigor, without any complain, felt the warmth of sunshine in the emptiness of my life, from the quest for knowledge turned to the quest for eternal rest. 

So I urge you on this day to read through and understand why my vivacity has dissolved in the blankness and I want death with dignity, mercy killing, euthanasia because the monster tortures me and eats my soul but as I try to shriek but get smothered and asphyxiated.

I loved life but now in silence as I am driven here, to know more what matters in life, and in the end, kindly read till the climax to comprehend my change of focus. How from being happy, carefree laughing I learned to cry. 

The pressure builds upon the nerves and various problems build-up as proper treatment is denied by certain doctors who are nothing but a leech. It exhausts my energy as with the approach of boldness as always and it feels like abandoning life in deep trouble, let alone the loneliness. 

Who am I? A mere nobody? Nobody has named me… I have named myself, I have named myself as 'Warrior Princess' because I have chosen to fight and not sigh and not cry. But the urge to fight has died down. 

Why did it happen? I was the one who always lauded life and believed in it? The existential terror of living in poverty and constantly being denied treatment brought in the change. 

"You can't just play doctor." To hell with it. I was supposed to sit for my JEE when due to seizures my father was called and he stopped my studies but I never lost the urge to acquire knowledge and because of my special interest in biology and English I constantly read and keep myself updated particularly on my rare diseases. 

I am not after pain medicines that will make me gain weight but I am after a treatment that will make a big difference in my life.

Since I am the only case in India and such cases are few, radiation oncologist says " let neurosurgeon recommend" neurosurgeon says " this is the job of the radiation oncologist and I become a scapegoat as my life hangs in a balance.

My father performed a bold act and everyone became concerned, when I needed a liver transplant, heaving, and gasping for air after a massive heart attack, with 80% of his heart blocked he approached everyone and everywhere. 

Why did he have to forego his treatment and save his daughter?

‘Money’ and ‘Power’ are the root causes in every act

of a felony, every crime, every treachery committed since time immemorial. Money, gold, holds allure because it gives power, a lavish lifestyle and many are ready to harm a life for its powerful charisma. Money tempts most people to wrongdoing. Crime is as old as humanity. Thus, it is since ancient times that brothers are

slaughtering brothers for the power of the throne and the wealth it brings along. Slaughtering, poisoning, strangling, asphyxiating, backstabbing, but achieving money and power and destroying every life in the way. Such is the queer nature of the human race. A son instead of being dutiful towards his parents desires the end of

the ailing, helpless parents and shoves them out of the way, a raving egomaniac parent drunk with the influence of wealth, affluence, power withholds what the offspring truly deserves, thus strangling the life out bit by bit.

Standing on the balcony I often think about how my uncle,  aunt, and the Southy singer popularly known as Didi

 tried to swat me out of the way like a fly sitting on the wall that can be easily swatted with a rolled-up magazine. 

They made a cunning plan to shove me out of the way after the suspicious death of my middle uncle who loved and cared for me. This attempt was made so that without me the family won't claim the inheritance which belongs to the family because I was  Achilles heel and without me, my parents would be shattered. They won't survive without me and they could easily take over the family estate. My father didn't have sufficient money for her daughter's liver transplant when they hatched the wretched plan.

How merciful God helped and bettered my life only we know.

I had a liver transplant owing to several tumors in the liver which could not be taken out individually causing excruciating pain due to frequent hemorrhages in 2008. The largest lesion caused splaying of the portal vein around the lesion. Hepatic veins were compressed and displaced by the segment 4&8 mass lesion. I had two episodes of bleeding in the hemangioblastomas and required hospitalization. Just before the transplant due to the pain of hemorrhaging hemangioblastomas I asked the attending doctor for euthanasia. 

The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like any pathogen. Immunosuppressants are expensive life-saving medicines. I am on immunosuppressive medicines for life.

I was diagnosed with a rare disease von Hippel-Lindau or VHL. It is a genetic form of cancer VHL patients battle a series of tumors throughout their life. VHL may occur in up to 10 organs of the body also there is a possibility of neuroendocrine tumors.

In general, however, the medication causes all or part of your immune system to “turn off” so that your body doesn’t go into attack mode, waging war against whatever it sees as a foreign invader. 

It dawned on my father after my first viral infection that a liver transplant doesn't end after the successful completion of the transplant, but the transplanted liver needs the immune system to be suppressed so that it isn't rejected like bacteria and viruses.

 Getting infections and requiring medicines to cure them are costly. Getting regular clinical and radiological tests are expensive. VHL and an organ transplant both require constant attention and a strict radiological and lab testing schedule to identify new tumors or those that have re-grown. Besides, you need to constantly check if the transplanted organ is working perfectly. VHL requires surgeries or treatment for symptomatic relief of tumors, benign or malignant. Regular monitoring by a doctor is required to control the plethora of illnesses that an organ transplant and VHL affliction bring. My father was at a loss as to how to manage. The very thought of how he will arrange my immunosuppressive (anti-rejection medicines) and other medicines and the plethora of illness that an organ transplant and VHL affliction brings... brought my father out in a cold sweat.

What are the side effects of immunosuppressants?

Fortunately, in most cases, an actual bubble won’t be necessary. Unless there's a pandemic going on and you are ill-fated that the army to protect you is disarmed. However, it is extremely important to understand the outcomes of living with a compromised immune system so you can protect yourself.

Side effects of immunosuppressant medications may include gastrointestinal problems like diarrhea, nausea, and vomiting. However, the most serious side effect of taking an immunosuppressant is the risk of infection. I have suffered plenty of infections throughout my life.

Father skipped his medicines to provide for my medicines. This continued for some time then the time came when he left us to the other world and we became homeless, penniless.

My mother and I had two choices ...death or preservation of life. We thought-- He who has given us life and has created us with care definitely has something in mind. Especially when Ma brought me to the world with so much trouble. Her first child was a miscarriage. When I was in her womb, just a foetus there was bleeding and my mother had trouble but my parents wanted to bring me to the planet.

 I became the apple of their eye. After my father's untimely death she took care of me and I am surviving because of good doctors like Dr. Randeep Guleria who cured me of MDR-TB, and Dr. Arvinder Singh Soin gave me a new lease of life through a liver transplant.

Then I got new tumors and it occurred in my mind and I sighed at the grim reality of my father’s massive cardiac arrest which blocked eighty percent of his heart, was because he was apprehensive of my brain surgery. Could he have thought that I will face the same situation again?

“I'm a goose, 

With an irksome noose, 

Round my neck, 

Zinging the tatty track 

With a woooooosh,

 Volubly yet I say, 

Wondrous abbreviated time,

Acrid stress, 

The drag race, 

‘live forever or die in the attempt’... says my selfish gene.”

I visited Dr. Ajaya Jha and he 

suggested I get a cyberknife by  Dr. Adirya Gupta and just six months after the cyberknife on my birthday it was discovered in my MRI that I have leptomeningeal hemangioblastomas. They are very rare tumors. 

Then it happened with the precise diagnosis of Late Dr.R.K.Sharma my kidney cancer and hypothalamic optic nerve tumor were diagnosed.

My next accomplishment in 2015, I had radiation therapy by Dr. Tejinder Kataria for an optic nerve tumor in the right eye. The tumor growth stopped but didn't shrink. 

The same year I had been diagnosed with kidney cancer for which I had to run around in hospitals while there was H1N1 raging in Delhi. I couldn't agree with Dr. N.P.Gupta to do a biopsy before taking the tumor out as it would cause seeding thereby metastasis. Ultimately Dr. Sanjay Gogoi did a partial nephrectomy and saved me in time because the running around made me get a fever and cough which abated and I recovered with Dr. Guleria's medicines. The tumor was 2.8 cms and I was going near the 3 cm rule, hence the partial nephrectomy happened at the nick of time.

But there was a problem with the landlord as he tried eviction but we couldn't leave until recovery. Thus, we had to change 7 houses.

At the end of 2016, I had to get an incisional hernia repaired and Dr.Soin helped do that surgery but due to negligence perhaps during the closure of the wound by the juniors, I got full-depth necrosis during the demonetization period.

Hence there was a back-to-back surgery of debridement done by Dr. Sanjay Mahendroo who saved my life.

 

Next time I was destined for radiation therapy by Dr.Tejinder Kataria for growing leptomeningeal hemangioblastomas.  During the procedure, I lost a lock of my hair. 

I was told hair grows back within 3 months but a bald patch remained. I was told by Late Dr. R.K Sharma, the tumor has minutely shrunk but there is a mild defect in the white matter.

The same year in 2017  just before Durga puja I started getting electric shocks in the right eye. Being confused I visited my ophthalmologist if the optic nerve tumor had gone wrong but he said to visit my neurologist. He could immediately say it may be Trigeminal neuralgia.

The neurologist immediately recognized the symptoms of trigeminal neuralgia and asked for an MRI. I underwent an MRI scan the next day and it confirmed the diagnosis of trigeminal neuralgia...“ Thin vascular loop of superior cerebellar artery (SCA) abutting cranial aspect of the right trigeminal nerve at the root entry zone is noted.”

Trigeminal neuralgia (TN), also known as tic douloureux, is a disorder of the fifth cranial nerve (trigeminal nerve). It is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and other areas on one side of the face. Sometimes there's a constant dull aching or burning pain. Both types of pain can occur in the same individual, even at the same time. In some cases, the pain can be excruciating and disabling. If untreated, TN can have a profound effect on a person’s quality of life. In most cases, TN develops due to a blood vessel pressing against the trigeminal nerve, but sometimes no underlying cause can be identified (idiopathic). It can also be idiopathic, due to compression of the trigeminal nerve, or can occur due to a known underlying cause such as a tumor or multiple sclerosis. TN can usually be managed through medications, surgery or injections, or stereotactic radiosurgery.

Entrepreneur and author Melissa Seymour was diagnosed with TN in 2009 and underwent microvascular decompression surgery.

I was diagnosed with a condition called ‘Trigeminal Neuralgia’ and soon after underwent Neurosurgery to try and fix it. There is a very long story here but suffice to say, it wasn’t successful, and having contracted ‘Bacterial Meningitis’ in the hospital, well, you could say that things didn’t quite go according to plan and so a nightmare couple of years ensued (Brad –my husband – and I call those the Black Years.) About 18 months after that first surgery, I finally underwent another Neurosurgery operation, which was a great success, and after the three-month recovery phase, went about rebuilding my very broken-down life...she wrote 

Branches of Trigeminal nerve

The mandibular branch( bottom) of the trigeminal nerve serves the lower jaw, including the lower teeth, lower lip, side, and front of the tongue, lower gums.

part of the ear. 

The middle or maxillary branch serves the 

the upper jaw, upper teeth, and gums, upper lip,

cheeks

 palate

 sinuses

 temples, and most of the nose.

The upper or ophthalmic branch serves 

the forehead, eyes

bridge of the nose.

There can be some overlap, especially in the eye itself.

The trigeminal nerves are responsible for the sensations of touch, temperature, and pain in most of the face. A separate branch of the trigeminal nerve also controls the muscles used in chewing.

It is also known as"suicide disease” as a result of those who killed themselves to escape the pain.

One or both of the trigeminal nerves are misfiring, sending pain signals when they should not. It is the loss of or damage to the nerve's protective coating, the myelin, that is somehow related to the problem.

I thought I got the right doctor in Mumbai HCG Khubchandani Cancer Center who said he could definitely treat me by cyberknife radiosurgery. Hence I got my expensive cyberknife on 17/3/2020 and came back to Delhi within 18/3/2020.

Not making the facts lengthy because you will lose interest coming to the point...

My current problems are

• I feel unsteady on my legs and can't stand and for a long time and my 68 years old loving mother helps me in the house. ( who takes the sparse meal to enthuse me and provide me the power)

• Seizures

• Headaches in the temples

• Nausea

• The pain in the forehead

• Sudden dizziness

• I vomit suddenly

• I have neck pain and headaches

• Swallowing problem. I got choked on rice and coughed my lungs out. I need to take mostly semi-solid food losing 12 kgs since May 2020. 

• I bite my tongue while eating or speaking and the dentist said to use lidocaine, an anesthetic (local)

• A metallic sound in my ear. 

• I can't hold things properly and drop them.

• I have to crush my medicines even Sirolimus to take them. Mycept ( Cellcept)has been changed to an oral solution.

• Losing bladder control

• Menstruation continues throughout the month making me even weaker.

• Slight problem with talking

All my life my treatment has been fulfilled through crowd-funding, public contributions but not much help from the government except the liver transplant.

Our country has only one proton beam therapy center. But when I first asked Dr. Rakesh Jalali, the director, interrogated me during the afternoon when I was taking a nap. He just didn't give me a moment to explain. 

According to him, he'd like a biopsy of my leptomeningeal hemangioblastomas like all surgeons in Delhi wanted prior to my right trigeminal neuralgia cyberknife in Bombay, 

His questions were like a jailor cross-examines a perpetrator.

• How many surgeries did I have?

• What were the biopsies?

• You can't get trigeminal neuralgia with VHL- I doubt it.

• I doubt your tumors.

• I doubt everything

Well, as luck would have it, Dr. Shankar Vangipuram changed his institution to Apollo Chennai. So now he can't have doubts about a second disease coexisting with the other one like my post-operative HypoPara.

Hypoparathyroidism is a rare endocrine condition in which insufficient or inactive levels of parathyroid hormone (PTH) are produced by the four tiny parathyroid glands in your neck.

Insufficient PTH leads to low calcium levels in the blood, or hypocalcemia. It causes electrolyte imbalance and can be a life-threatening condition if untreated. 

Why is calcium so important? Calcium is vital to life and affects every cell in the body. Most people know about teeth and nails in connection with calcium but its effects are on the whole body - nerves, muscles, and organs. It helps blood to clot and is important in energy production. Calcium is crucial to us which is why the body has special mechanisms like the parathyroid glands to keep calcium levels constant. 

Treatment with vitamin D analogs and calcium supplements is not ideal and can lead to long term renal problems. Calcium levels fluctuate but home calcium testers are not available so monitoring this condition can be challenging. Until 2015, HypoPara was the only endocrine condition without its own replacement hormone. Injectable parathyroid hormone is now licensed for use in the treatment of HypoPara in the USA but is not yet available elsewhere.

I called him back the other day and said he shouldn't be having any doubt about my Trigeminal neuralgia and my right side of my face is numb. 

I lost 12 kgs from May 2020 due to my swallowing problem.

A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby tumor cell spillage. 

Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome associated hemangioblastomas frequently express SSTR

I also have a chronic ischemic brain since the 2017 radiation therapy and trigeminal neuralgia started right after that so proton beam therapy can save me, extend my life and its quality.

Radiation therapy has been the mainstay for my leptomeningeal hemangioblastomas because

 "Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analyzed is small. Patients may have other underlying health issues that may affect the data.

Because no case of de novo development of disseminated HB without previous surgery has been reported, it is strongly suggested that the spillage and spread of tumor cells through the CSF space may be an origin of hemangioblastomatosis in patients with a genetic predisposition to the condition, Care should be taken to avoid tumor cell spillage during surgery."

A fellow remarked after he saw the picture of the scan of my brain tumors

" you have more tumors in the brain than people have lice in hair.''

There is no data on the competence of the surgeons and equipment used in the initial CNS surgery so trying to determine if cell spread was caused by any incompetence during my brain surgery (craniotomy) in 2006 would be extremely difficult if not impossible to prove beyond a reasonable doubt. The fact that the physiology of each tumor is different and the number of cases is so small means that an accurate comparison of surgeons is impossible. 

These tumors are extremely vascular. A biopsy would make them bleed resulting in a stroke. After my first brain tumor surgery, done in 2006 I woke up with paralysis on the left side. After the craniotomy ( open brain surgery) I experienced total numbness in my arms and hands and I couldn't close my fingers and make a fist. But this was sorted out by proper physiotherapy and exercise and I got back control of my limbs but even now I don't have sensations in my fingertips.

Dr. Robert Wilson described the rationale for using proton beam therapy for the treatment of cancer as early as 1946. The early proton facilities were mainly physics research laboratories that seldom treated patients with cancer.

Too much radiation kills healthy tissue. That's why my white matter was destroyed and I got a chronic ischemic brain.

Cerebral ischemia or brain ischemia is a condition that occurs when there isn’t enough blood flow to the brain to meet metabolic demand. This leads to limited oxygen supply or cerebral hypoxia and leads to the death of brain tissue, cerebral infarction, or ischemic stroke. It is a sub-type of stroke along with subarachnoid hemorrhage and intracerebral hemorrhage.

Beneficial effects of radiation therapy occur when a lethal dose of radiation is deposited in the area of the tumor and the harmful effects of radiation therapy occur when healthy tissue is inadvertently irradiated while trying to treat the tumor.

The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumor but also the healthy tissue that the beam encounters on its way towards the tumor and beyond the tumor. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.

A proton beam directed at a tumor travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumor. 

Hence, only proton beam therapy can deal with my countless leptomeningeal hemangioblastomas.

Proton vs Photon positivity vs negativity. Knowledge expands life and its quality.

Stung by a jewel

Piercing the head

Clinging against the lump

Stung by a jewel

The point deep into the head

Driven in and allowed

Other jewels rain-down on my head

My grief and pain are dead

Into the ground, they spread

Now I called and spoke to the director who has never seen so many tumors together. He asked me for my neurophysichian's prescription. 

Dr.Col J.D Mukherjee has always commanded militarily. 

Doctor tells "me you are depressed", I say this is not depression. This is oppression.

Even Dr.Russel Lonser from Ohio emailed me "I have encountered the problem that you describe below.  We have used craniospinal radiation in some cases and/or adjuvant chemotherapy for leptomeningeal hemangioblatomatosis. Unfortunately, I can not open your film files.  Russ"

Now Dr.Shankar Vangipuram asks for a certificate from a neurosurgeon as per Dr. Jalali's instructions.

Don't they understand how they are putting me in peril by denying treatment? New MRI, haha! As if I am going out in Coronavirus and with my low immunity get it and mucormycosis the rare fatal diseases and 

"If you missed the train I'm on

You will know that I am gone

You can hear the whistle blow a hundred miles"

I will be sleeping but don't offer any condolences because you left me and I am now gone and never desire to see such atrocities. 

I am not going to surgery. It would be like plucking berries and I won't survive. I want my life back. I am denied treatment thereby my right to live and looking at my agony my mother cries in front of God every day. God is not punishious but I am denied life by selfish humans with a vested interest.

Doctors who want a welcome addition to their account for easy tasks like trigeminal neuralgia or prostate cancer are posted as Director and staff at Apollo. Taking a challenging surgery or job mmmm it's lethargy speaking why do so much when I can fill my pockets with easy ones? 

Those who accept challenges are praised as winners.  Dr. Soin did it during my liver transplant. He told DNA over the phone: “It was like any other liver transplant, but the challenge was removing the rather large tumors without bursting them." He even said I am a precious patient during debridement.

Dr.Sanjiv Saigal who is  keeping me alive with the right dosage of immunosuppressants. Applauding my efforts in writing books and in Times of India are heroes.

Dr.Harsh Mahajan, Dr. Ishita B Sen hasn't forgotten humanity but can't help for the treatment any. 

" Being a biology topper, associated with the global population, reading research and books I do know a lot about my own diseases."

But for doctors a patient with knowledge is sin! Reading is sinful because I can't do it by myself , by myself.

I write everything down in my blog as a diary to whom I can tell every detail, including my love for science. But I was born in a wrong country or a wrong planet.

If you keep my wish God, to whom I pray every day shall transfer me to a good one where there is harmony . One of those planets discovered lately and I shall travel through a disappearing black hole.

 There are many such Doctors and people who help. Few block you on WhatsApp from Apollo proton beam therapy centre. They are not humans but androids.

I had a chat with God that it's abdominal to live in pain and suffering.

I had written 3 books and an article for Sahitya Akademi with my one-eyed vision.

 People taking opportunities, stealing my book written in the peak of pain and using in her 3 schools as the syllabus for classes 8,9,10, and earning from it. 

A legal notice has been sent which remains I replied and two letters being sent to Noida police station but one denied to accept.

Since I can't create a life, I can't take my own. Hence the soul in agony desires a mercy killing because my right to live is denied for 40 years in this revered country.

Weariness of life

Bright sea of faces-

Fatigue, suffering, silence-

Pall of aloneness

Solitude walks alongside;

Mum's care alleviate the ennui

https://www.practiceupdate.com/content/proton-craniospinal-irradiation-for-leptomeningeal-disease/92973