" Mutation is the key to our evolution. It has enabled us to evolve from a single-celled organism into the dominant species of the planet. The process is slow, normally taking 1000 and 1000 years. But every few hundred millennia evolution leaps forward"
I had never loved any character as much as I loved Wolverine with his enhanced physical capabilities, a powerful regenerative ability known as a healing factor.
The complexity of their existence, the trials of maladies forced me to struggle to live.
The will to live is an unstoppable thing. Most people live only when they are about to die.
I am not after pain medicines that will make me gain weight, damage my transplanted liver and whatever I have left of my left kidney but I am after a treatment that will make a big difference in my life.
Our country has only one proton beam therapy center. But when I first called the director I didn't get any reply. I took a nap in the afternoon but unfortunately, I forgot to mute my phone. As it rang he right away started interrogating me. He just didn't give me a moment to explain. He doubted everything or was just making it up to ignore my treatment. My brain was foggy and I couldn't reply. Such doctors are belligerent on patients whom they don't want to handle.
As luck would have it, my HCG Colaba doctor 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 disorder that causes lower than normal levels of calcium in the blood due to insufficient levels of parathyroid hormone. This condition may result from neck surgery.
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. Father cared for me so much that he celebrated his birthday by buying me an expensive book.
Few diseases of the present have little in common with the diseases of the past because of their rarity but like an owl, you have to pore over abstruse medical documents and make it your pastime with a great penchant for general science with an interest in medicine.
Being a biology topper, associated with the global population, reading research works, and books I do know a lot about my own diseases.
I think of the overwhelming despair of the medical practitioner roaring,
“You come and sit in my chair; let me go sit in your chair.”
Their impossibly bumptious opinionated ego deflates showing all the indications of superiority. He has earned his degree through remarkably well medical training going through the rigors of medical school, how can an inferior creature ask him questions?
This peculiar outbreak of blind rage and reprisal I faced in the unfunny days of my first brain tumor.
I spoke with authority because it was my body he would work upon and if he doesn't do a very careful job with his scalpel with full knowledge of what he was about to do then my fragile life bird would have flown away. I had the full right to know what was to be done to me.
After completing their medical degrees do they plunge into the world of unique diseases, keep themselves updated, keep track of all those maladies?
But for doctors a patient with knowledge is sin! Reading, and knowing is sinful because I can't do it by myself.
"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 did physics in my BSc and know about Ernest Rutherford's experiments at the subatomic level.
Nobody can call me the frog in the well
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
After my brain tumor surgery(2006),
I was diagnosed with tumors compressing and displacing hepatic veins, hemorrhaging inside so that I needed a liver transplant and my relatives thought of not giving money because they have sold the portion of the property allotted to Father to the Southy Singer popularly known as Didi, not even the money in the bank and the jewelry according in the will because they wanted to swat me out of their way. I was the Achilles heel for my parents.
"Prosperity gains friends, adversity tries them". The friends and relatives who used to drop in at odd times often to enjoy, especially the one whom father took to Manali for some refreshment went their own way. Few became busy with finding a groom, others just avoided.
Fie, I say! They only knew money.
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 for help to save his daughter's life.
How merciful God helped and bettered my life only we know through his messengers.
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. I asked the attending doctor for euthanasia.
In an escalating crisis, divine intervention gave me a new lease of life through a liver transplant but turned off my reliable troops, my immune system so that the organ isn't rejected.
The pharmaceutical marvel made my already bankrupted father take loans as his family denied paying the assets he deserved. His heart was 80% blocked, and he skipped his medicines to provide mine.
Not only we faced shocking poverty where we didn’t have money for food the next day, but I acquired MDR- TB living in lousy cramped houses and changed houses 7 times hounded by landlords.
My brain literally changed in chemical composition when I understood the monstrosity and the oddity of my disgraceful lingering illness. It has larger economic implications.
It was suggested that I get a cyberknife when 2 brain tumours appeared 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 brain 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 for an optic nerve tumor in the right eye. The tumor growth stopped but didn't shrink. The same year I had a partial nephrectomy.
There was a problem with the landlord as he tried eviction right after I was diagnosed but we couldn't leave until recovery and fought the court case with two kind pro bono lawyers.
Next time, in 2017 I was destined for radiation therapy 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 defect in the white matter.
The same year in 2017 I started getting electric shocks in the right eye.
The neurologist immediately acknowledged 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.
Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain.
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.
In 2020, on 9th January all night long I hugged my mother and cried my eyes out for 10 days and my food intake became limited as electricity passed through my teeth right to the brain.
I got the cyberknife in Mumbai HCG Khubchandani Cancer Center. I got my expensive cyberknife on 17/3/2020 and came back to Delhi within 18/3/2020.
I called the director back stating my problems and said he shouldn't be having any doubt about my Trigeminal neuralgia and my right side of my face is numb. The left side remains.
He even replied, " it feels good doesn't it?" Of course, numbness is a thousand times better than lancinating pain.
He shouldn't have doubted my leptomeningeal hemangioblastomas as 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 has been the mainstay for my leptomeningeal hemangioblastomas. A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby tumor cell spillage.
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 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.
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.''
These tumors are extremely vascular. A biopsy would make them bleed resulting tumor cells spread a stroke.
Entrepreneur and author Melissa Seymour was diagnosed with TN in 2009 and underwent microvascular decompression surgery. It wasn’t successful and having contracted ‘Bacterial Meningitis’ in the hospital.
Sometimes prognosis becomes a nightmare if you are not familiar with the disease and doctors are negligent.
Too much radiation kills healthy tissue. That's why my white matter was destroyed and I got a chronic ischemic brain which occurs when there isn’t enough blood flow to the brain. This leads to limited oxygen supply or cerebral hypoxia and leads to the death of brain tissue, ischemic stroke.
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.
But I feel horrible Nazis have started ruling the medical world. Now I director who has never seen so many tumors together expressed his desire that I procure are neurophysichian's prescription
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.
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.
The doctor tells me " you are depressed", I say this is not depression. This is oppression.
Even Dr.Russel Lonser from Ohio emailed me
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
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, single brain tumor are in position as Director and staff at Apollo---only proton beam therapy in South Asia.
Those who accept challenges are praised as winners. The liver transplant was done by a gutsy committed surgeon. 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.
Transplant hepatologist is keeping me alive with the right dosage of immunosuppressants. Applauding my efforts in writing books and in Times of India are my heroes.
. But I was born in the wrong country or on the wrong planet.
The creation of Man is supposed to be God's best job, greater than the animals with morals and principles but they have turned out to be leaders in their dominions and its authority which is supreme and impregnable.
If you keep my wish, God, to whom I pray every day shall transfer me to one of those 24 super-habitable planets discovered lately and I shall travel through a disappearing black hole. I had a chat with God that it's abominable to live in pain and suffering.
Pleasures and indulgences of life aren't everything. Humans have a natural desire to have more good things than he needs.
When life was sheer willpower hanging by two or three threads those who care little suggest, with affection, many generous people could do the duty, perform the responsibility he had sworn ardent commitment to.
Sometimes I wonder what's the purpose of life after all the suffering I endured since my birth? How do I cope with a death sentence?
Life should be embraced with passion and positivity: concepts that should be appreciated by healthcare professionals when dealing with patients with chronic or terminal illnesses.
The soul in agony desires a mercy killing because my right to live is denied for 40 years in this revered country.
WE, THE PEOPLE OF INDIA, having solemnly resolved to constitute India into a SOVEREIGN SOCIALIST SECULAR DEMOCRATIC REPUBLIC and to secure to all its citizens
JUSTICE, social, economic, and political;
LIBERTY of thought, expression, belief, faith, and worship;
EQUALITY of status and of opportunity;
and to promote among them all FRATERNITY
assuring the dignity of the individual and the unity and integrity of the Nation.
Where's the equality here? Why is there a distinction between rare diseases?
Our country doesn't follow the Constitution?
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