Saturday, August 8, 2020

Floccinaucinihilipilification

 



The most striking disclosure among the world of people is that we are connected. According to neuroscience, our brain is designed to make us sociable. The neural bridge lets us affect the brain and body of everyone we interact with and vice versa. The more strongly connected we are with someone emotionally the greater is the mutual fondness. Our most vital conversations occur with those people with whom we spend the greatest amount of time, day in and day out and those who care about us the most.

The result of the neural linkups has profound outcomes that vibrate through the core regulating our immune system and triggering the flight or fight hormone. Thus my childhood relations with cousins, school friends and family members had both favourable and unfavourable impacts on my life.


When I grew up I learnt that people who "used to be close to you...who had meals in your house, stayed over with you, enjoyed every celebration with you, travelled to the mountains with you"… gladly walk away when they see you in danger, they don't care if you live or die.


When I make a trip down the memory lane I wonder if humans have a mind to act hand-in-hand, to help others even when it requires their efforts? Or are they, in their very hearts, selfish creatures?


 I think for them life and lust are synonymous. Everyone has a similar hobby, that of collecting money. Even kinship and friendship can be pitted against the desire for large sums of money.


Money under most circumstances can't buy peace and happiness for you. Your Creator will provide just as much as you need for your own personal sustenance because that is what you deserve, asking for more is being greedy and is a punishable offence. We find everyone running after fame, prosperity, wealth and power which results in daily indigestion and therefore they have built-in gyms in their premises to work out, not just to build eight-pack abs by shedding out the extra fat but to get rid of menacing indigestion and get a peaceful night's sleep which seems to elude them always. You become a runner with extra fizz or a singer with a melodious voice without realising the timeless melody of life. There are a range of emotional traffic from sadness, anxiety to extreme joy. Mother's smile is a contagion and acts as a way to uplift the sport.


Neuroplasticity reshapes the brain with repeated experience with various relationships with the effect of either being chronically hurt or chronically angered or emotionally nourished. 


From the time we are infants, we are equipped with the survival instincts necessary to respond with fear when we sense danger or feel unsafe. But sometimes people facing constant challenges develop boldness boosted by the nourishing relations which can also buffer us from diseases. The vital nourishing relation in my life has been my mother. Mum had been exploited and overburdened by her in-laws, yet she had taken care of me and suffered herself as her own kith and kin turned their backs on her.  She had never known soundness, only struggle. With age, she too is getting tired and irritable tackling all the work single-handedly. She needs to be taken care of. She is my caregiver and she taught me to walk boldly through the terra incognita.  As you learn to control life it becomes joyful.



A Warrior Princess I am, 

I wage wars with head held high, 

A warrior, never afraid of wounds, 

A Warrior dies dancing that’s who I am.

 

Trudging hills never trodden by, 

Propelled into uncertain territory, 

Soul deeply wounded by black melancholy, 

Never stooping to fear or sentimentality, 

Chasing desires, not waiting for fate to show mercy;

Flowing forth with random delight in stark reality,

Gloom of doom come what may;

Banished all worries, doubts, 

I moved onward in the track valiantly, 

Imploding yet ebullient in a spree, 

Compounded difficulties, hiemal cold manner can’t faze me,

Benign friends express fervency.

Content with mysterious, meaningless, contradictory, hostile, 

Unexplainably warm and giving,

Fearfully enclosed minds,

I hurtled the absolute randomness, 

On the verge of uncertainty. 


 Proffered relations, friends, unfailing support,

 Bravado, mercy, pity, arrogance,

A loner rushed forth in the path of life.

Halt! Patience!

I hear people cry,

But I'm at a point of no return. 

 

I’m brave, I rave,

Grave only when repressed,

Crammed with memory, hoarding much,

Endured much, weary of wounds,

Feelings which built up in the War,

Hardened and died inside,

Soul searcher I am,

Reality seems absurdity,

Kind, affectionate friends,

Elevate me, eke out positivity. 

 

I still dare to change the things I can,

I resuscitate ceaselessly,

I wage wars with verve

In a point of no return

Yes, a Warrior Princess I am.


Wild bouts upended direction, 

Infallible friends formed my legion, 

Marched with me without regression, 

Flew fearless without reason, 

Melancholy replaced by undying optimism,

Turned to memory,

Worries banished, never looked back in history. 

 

 I welcome change with open arms,

Grow and live vibrantly not in a trance,

Soul dance,

Immense will billow like a towering tsunami;

Summon up the courage to live life once,

Regression dishonor efforts and makes them undone,

Thus I move on with fluency.

 

I hurtle the chaotic reality in Mum's glorious presence,

I resuscitate ceaselessly,

Wage wars from a point of no return.

A Warrior Princess, I am.”


There are few people who are born good, instinctively concerned with the welfare of others and they have realised my sufferings and struggles. I am blessed with a few true friends in India and across the world who encourage and help me. 

A friend is sweet when it's new,

 Sweetest when it's true.

Many thought that by helping a destitute they will use me as their portable step ladder to fame.

Prettify, nor falsify no one,

They are but for a season,

Gathered to escort the lost one,

By way of cosmic expression,

Collective train of thought mitigates privation.

 

Here comes the season

Of faces blurring and fading away

Like a dream, in illusion.


There are also a few doctors who cheer me, while some say they are proud of me others help me out with paying hospital bills or others who are very close listen to me and attend my Whatsapp messages every day. These interactions help me get along better with life. 

These actions are like grasping hands when pain and distress are tearing my soul apart and assuring that the whole world is so beautiful and smiling with me beckoning me to jump up and go watch the sun-kissed world and a spontaneous force pulls strings from within and I find my wounds healed.


 My brother's concern too helps lessen my pain and the daily struggle, his sudden bursts of positivity.


Life is a game of chance;

Granted once;

Supercalifragilisticexpialidocious! 

Life is so beautiful and precious!


I was dumbfounded to find social chameleons in my life, it was pathetic and ruthless, meanest, greediest, cruellest, backstabbing act knowing in the heights of my lancinating pain and how with my brain riddled with tumours I produced the intellectual property and taking the opportunity of the deathly silence of the pandemic earning their livelihood. I expect everything, the unexpected never happens, printing and training have become a game. " Love thy neighbour as thyself, help them with thy soul and thy mind"  is the eternal saying but days have changed. People with shabby ethics want to swamp a struggling differently-abled patient suffering continuous surgeries from her ailments but they have chosen the wrong soul war which began surely by stepping on the edge, in ‘extremis’ still continues.





Her cogs and circuits malfunctioned

She fought the war unlamented

She faces life uncomplaining, contented

A very long time ago, a lifetime before the present

A dragon came to blaze up her life, push her to perdition

She traversed Via Dolorosa holding tight

Inspired by glorious Mum's might

She fought the demon with Mum’s inspiration

With congested brain but plenty of imagination


Faced the momentous occasion

Putting her faith on Divine Providence

God's intervention

Even in unthinkable pain

She does not complain

All is but floccinaucinihilipilification

She smiles in jubilation.


Sketch by me


Monday, August 3, 2020

Turn on the sun, light up a life by organ donation.



Kings held a unique position in ancient Egyptian society, they were somewhere between human and divine.

Thus they believed that when the king died, part of his spirit (known as “ka”) remained with his body. To properly care for his spirit, the corpse was mummified, and everything the king would need in the afterlife was buried with him, including gold vessels, food, furniture and other offerings. Their riches would provide not only for him but also for the relatives, officials and priests who were buried near him.

The pyramid's smooth, angled sides symbolized the rays of the sun and were designed to help the king's soul ascend to heaven and join the gods, particularly the sun god Ra.


Likewise, do you plan to bury or burn your favourite car, washing machine and all your possessions so that you can use it after your death? If you are planning to build a mausoleum for all your favourite things you are free to try it out and see if you can use it in your afterlife, including all the wealth you have acquired.


I want to remind you of what I mentioned in my last post


"Devi Parvati sculpted a son to guard the door of her palace. When Lord Shiva tried to enter he drove him back and all the Gods. While Ganesha was involved in a duel with Lord Vishnu, Lord Shiva moved slowly from behind and cut Ganesha's head with his trident. Lord Shiva agreed to bring back Ganesha to life and grant him divinity. Lord Shiva did the first mytho-historic transplant surgery and Ganesha was brought back to life.


After the transplant surgery, Lord Shiva is believed to have given Ganesha an elixir to drink. One cannot help speculating if this was some potion containing an anti-rejection medication."


Also, how Prometheus unflinchingly bore the cruelties and the tortures inflicted by a bird of prey eternally for gifting fire to better the lives of mankind.


In every field of life, you enjoy the results of your work or suffer the results and you cannot escape it. This is your karma. You suffer or enjoy the results of your activities from time immemorial, but you can change the results of your karma and this change depends on the way you react. For every action, there is an equal and opposite reaction.

 A hug is like a boomerang, it comes back to you because if you hug someone you get hugged too. So instead of burying or burning hearts, lungs, kidneys, livers and all other organs why not pledge to donate them. 


Donate your eyes and help a soul to sense the beauty of nature. How little birds twitter on green leafy branches, the warm rays of sunshine light up the cloudless sky.


Don't say tut!tut!tut! Because lots of people need a healthy organ, today is Friendship Day and tomorrow is Rakhi, an auspicious day so why not gift a brand-new life to some struggling spirit? Your payback will be refunded.


Remember the liver is the only organ which you can donate while you are alive and kicking and even if 70% of your liver is is removed and can grow back to normal size within a few weeks provided the remaining 30 %is healthy. Thus, a living person can donate a liver out of affection and go back to normal life in a matter of days. This transplant is safe and possible due to this uniqueness.

This is also why half livers transplanted into recipients are very successful since they soon grow to normal size.



Our scriptures say


  • Do your duty, but do not concern yourself with the results.


  • The fruits of your actions are not for your enjoyment.


  • Even while working, give up the pride of doership.


  • Do not be attached to inaction.


Gift of life is the most wonderful thing on Earth. Light up the candle, the dia and make someone's life joyful and livable. No deed is greater than this. 



"Turn on the sun, turn on the sun

Open the doors, come tell everyone

Bad times are out, good times are in

Turn on the sun, let's smile again."


For more guidance on living liver donation please contact

Dr Arvinder Singh Soin

Chairman

Institute of Liver Transplantation and Regenerative Medicine


He's a wonderful person who will guide you and explain how safe it is!

Sunday, August 2, 2020

Miracles and madness of life

I had a strange childhood. In my early childhood, I masked my unique feelings and emotions and hid it from my parents.


When I started getting partial seizures doctors thought they'd do an MRI and the scan showed a tumour had grown more than five times from a tiny dot from a previous  MRI. Shouldn't they have watched the tiny spot? They neglected thinking it won't harm in any way. My father went to most hospitals across India for the symptomatic brain tumour. After fifteen days of admission,  when the doctor saw I was reading "Minority Report " in the hospital bed he denied doing the surgery and told me “Come at the last moment when the tumour grows to the size of a Deus ball” it was also added that there was a chance of getting paralyzed for life.

My father sought out a tiny nursing home in Kolkata with minimum facilities where ultimately the craniotomy was done in 2006. 


Within four months I had strange symptoms and vascular tumours were detected in my liver but due to lack of money, we didn't get treatment. Meantime, tumours grew and studded the liver in a way that transplant was the only way out. 


I always felt captivated when I heard the lines " 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 of 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 and powerful regenerative ability -- the healing factor. 

I had endured two episodes of intense pain and in the last one asked the doctor to get euthanasia done. It was so painful.


But the magic of myth guided my doctors and my life turned around.


When I read the story of Prometheus creating men, I never knew it would change my life. Initially, it was a sunless world, with land, air and sea mixed together reigned by a deity of Chaos. Prometheus was entrusted with the task of sculpting Mankind from mere clay.


 He went to make them wiser and better but was filled with grief as he found them living in caves holes shivering with the cold because there was no fire, dying of starvation, hunted by wild beasts and by one another.


In order to better the lives of his creation, he went into direct conflict with Zeus and when Zeus withheld fire he disobeyed him and stole fire from heaven as a gift to Man. Zeus, the ruler of Mount Olympus had no compassion for the man and he meted out punishment for this daring crime to Prometheus.


For this rebellious act, in his rage, Zeus chained Prometheus to the Great Caucasus Mountains where an eagle was set to feed upon his ever-regenerating liver.


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 tumours throughout their life. VHL may occur in up to 10 organs of the body with a possibility of neuroendocrine tumours.



I found hope as I remembered my maternal grandmother's words, 


Devi  Parvati sculpted a son from some clay out of a pond to guard the door of her palace. Ganesha stood as a sentry as Devi went for a bath. When Lord Shiva tried to enter he drove him back and all other Gods. Lord Shiva cut Ganesha's head with his trident. As Devi Parvati learnt of the tragedy she was ready to destroy the universe. To appease her Lord Shiva agreed to bring back Ganesha to life and grant him divinity. As the head was lost in the battle his companions went in search for a first living being they saw, it happened to be an elephant. Lord Shiva did the first mytho-historic transplant surgery and Ganesha was brought back to life.


After the transplant surgery, Lord Shiva is believed to have given Ganesha an elixir to drink. One cannot help speculating if this was some potion containing an anti-rejection medication.


In a similar way, I got a new lease of life through a landmark liver transplant with the funds acquired by donations. But then my father perished and my foxy uncle took our house from us in a cunning way and we were left penniless and homeless.



These days we are aware that the liver is the only organ in the body endowed with the power to regenerate itself after large portions of it are removed. Liver functions normally even when as much as 70% of it is removed and can grow back to normal size within a few weeks provided the remaining 30 %is healthy. Thus, a living person can donate a liver out of affection and go back to normal life in a matter of days. This transplant is safe and possible due to this uniqueness.

This is also why half livers transplanted into recipients are very successful since they soon grow to normal size.




It was then that my real tough times began and we had two choices ...death or preservation of life. 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 seven times hounded by landlords but ended up with 15 surgeries with the rarest brain tumours.




I understood the frightfulness and the oddity of my nasty lingering illness and its larger economic implications...the humiliation of asking for financial help, money concerns for food, medicines and rent as if not just physical suffering was enough.



 My brain tumours are the rarest ones. A fellow remarked after he saw the picture of the scan of numerous lesions scattered throughout my brain,


" You have more tumours in the brain than people have lice in hair.''


After I returned from a cyberknife of the right side of my bilateral Trigeminal Neuralgia I asked help from an elite lady who has already earned her name but she desired to bask in the glory of her deeds being choosy... which duty to do… which will fetch more attention of the whole country and told me she could arrange for my immunotherapy because she knows Dr Randeep Guleria, the director of AIIMS...I was speeches about how people can be narrow-minded not knowing the larger world around them.


Immunotherapy works by boosting the immune system so it works harder or smarter to find and attack cancer cells. whereas, immunosuppressants are drugs or medicines that lower the body's ability to reject a transplanted organ just like any bacteria or virus.


Also, I'd like to mention I know Dr Guleria pretty well because he diffused the bombs of MDR TB in my lungs.


These days people understand only their own troubles and see their own perspectives. Soft-brained, weak-minded, chicken-hearted people get the best attention whereas a warrior is like an elephant in the room like something everyone is aware of, but which is being ignored because everybody finds discussion about it uncomfortable. I am afraid the differentiation between diseases, comparison of lives will stop when pigs fly.


While the world wages a war against COVID 19 my war intensifies.


There is a concern that immunocompromised patients are at a greater risk of morbidity and mortality due to COVID-19 infection, although data on liver transplant patients is limited at present [6].


Immunosuppression strategy during the COVID19 pandemic 

Although there is a concern that organ transplant patients may be at a higher risk of COVID-19 infection, there is no evidence as of now to modify the immunosuppression protocol. Standard immunosuppression should be followed in the post-transplant period until further data is available.


Follow up post-transplant.


Patients should follow up with their respective centres as usual. It is strongly encouraged that the patient should avoid hospital visits for routine follow up and consult online via telemedicine.


However, those patients with post-transplant emergencies should attend hospital as usual and should be provided with necessary standard care by the transplant team.


Recipients with symptoms such as fever, cough and breathing difficulty should be evaluated for suspected COVID-19 infection as per the national guidelines.


- a message from my doctor Dr Sanjiv Saigal, Senior Director Transplant Hepatology at Medanta the Medicity.


Thus, I assume being a prisoner in your own home isn't a good idea but a sensible one until it's safe outside.


 Prometheus unflinchingly bore the cruelties and the tortures inflicted by a bird of prey eternally, but so have I. Perhaps in the face of life’s mutability, its unceasing and unforeseeable vicissitudes if I face life with spirit, courage and boldness my Creator will grant me the much-coveted healing powers of Wolverine and then I will be the saviour of mankind. If not in this life perhaps the next but I tell you I will be a superheroine doing good for the world.



Image credit: Akash Sharma. 

The picture was taken with Dr Guleria in 2013.

From:https://timesofindia.indiatimes.com/blogs/warrior-princess/miracles-and-madness-of-life/


Monday, July 27, 2020

Rarity of the central nervous system leptomeningeal hemangioblastomas

If you have the most unusual diseases known to humankind it becomes a fateful condition where you can't afford to be ignorant if you desire quality and extension of your life.

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.


When you are bombarded with heavy-duty medical words of a mysterious sickness as your diagnosis by medical men don't become trifle too dreamy and treat their words as gospels. I faced a peculiar outbreak of blind rage and reprisal in the unfunny days of my first brain tumour.


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. 

So better not stare at them with stupefaction, even the most brilliant medical mind can make mistakes and it happened with me twice… when unwary surgeons worked for hours to save a patient's life, noted a minute detail but failed to test it for any further implications... next time it was when their negligence led to the other doctor saying "Everything is in God's hands" and I ended up showing an upturned thumb because God showed them the right path. They are not omnipotent, they use their acquired knowledge and skills to save a life.






I have a very serious condition known as "Abibliophobia" but I am not here to explain that. I am not going to reveal how I deal with it. It has no cure, if you really have it, you will slowly learn how to deal with it but I must warn you there's no recovery.



Strange but true we are afloat in a broad sea anchor-less,


Fear sets in when we shed a tear in aloneness,


Ah! What a mess!


" Have no fear!" said Hope,


"When the day gets sunny,


We will have a lot of things that are very funny."




So I say never stop believing in hope because miracles can happen any moment! You never know being optimistic can make the wave of "Hope's"  magic wand turn your life! 


A lot should be shared with others from what I have learned in a simplified way, so here it goes…



Brain tumours grow within a rigid, firm bony skull. Benign, slowly growing or malignant brain tumours may produce serious neurological symptoms and signs prior to treatment or cure but rarely metastasize outside the central nervous system (CNS), disability and death occur when the intracranial contents exceed the intracranial space, causing herniation and compression of respiratory centres.



Fewer than 5% of patients with brain tumours have a predisposing genetic syndrome. The most common of these are von Recklinghausen's types I and II neurofibromatosis, tuberous sclerosis, von Hippel-Lindau disease, and the epidermal nevus syndrome. These dominantly inherited neurocutaneous syndromes are associated with an increased incidence of specific tumours.





von Hippel-Lindau or VHL which is a genetic defect that causes capillary growth to go out of control. While the tiniest blood vessels or capillaries usually branch out gracefully like trees, in VHL patients a little knot of extra capillaries forms a growth or tumour and in certain cases, it turns cancerous. It is a genetic form of cancer VHL patients battle a series of tumours throughout their life. 


VHL may occur in up to 10 organs of the body like liver, kidney, brain, spinal cord or retina, inner ear, pancreas. There is also a possibility of neuroendocrine tumours.


To know about leptomeningeal hemangioblastomas we need to know about meninges or the coverings of the brain.


Meninges are the three membranous envelopes—pia mater, arachnoid, and dura mater, that surround the brain and spinal cord. Cerebrospinal fluid fills the ventricles of the brain and the space between the pia mater and the arachnoid. The primary function of the meninges and of the cerebrospinal fluid is to protect the central nervous system.

The two innermost layers of tissue, arachnoid mater and pia mater that cover the brain and spinal cord are together called the leptomeninges.



Now we come to Leptomeningeal dissemination of Hemangioblastomas


Hemangioblastomas of the CNS are solid or cystic vascular-rich tumours, most common in the cerebellum, less frequent in the brainstem or spinal cord and rare in supratentorial locations with meningeal involvement. 



Hemangioblastomas of the central nervous system are the most common tumours seen in patients with von Hippel-Lindau (VHL) disease.


Leptomeningeal dissemination of hemangioblastomas (HB) of the central nervous system (CNS) is extremely rare. Between 1902 and 2013, approximately 132 cases were reported. Few studies have reported leptomeningeal involvement in sporadic HB or in HB associated with von Hippel­Lindau syndrome.


Diffuse infiltration of the leptomeninges is known as hemangioblastomatosis and has been observed both in VHL disease and in patients with spontaneous mutations. 


No effective therapy has been established.

Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. 


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 tumour 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 tumour cell spillage during surgery.



Prior to surgery of the initial tumour, planned embolization should be undertaken if possible to reduce blood loss. However, depending on the actual tumour structure embolization may be found not to be possible. Reducing blood loss may also help in reducing tumour cell spillage and spread.



 Looking at tumour cells in the spinal fluid under high-resolution MRI scans are all that is necessary for an accurate diagnosis. A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby cell spillage. 






I was diagnosed with supranational leptomeningeal hemangioblastomas in 2013. I have been seeking anyone experiencing the same condition but didn't find anyone till now. So I consider myself a myth, a unicorn more so because a fellow remarked after he saw the picture of the scan of numerous lesions scattered throughout my brain,


" You have more tumours 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 tumour is different and the number of cases is so small means that an accurate comparison of surgeons is impossible. 



I get stereotactic radio-surgery before the growing tumours start putting pressure on the brain. I have lost vision of my right eye for not being able to avail radiation therapy at the right time because of financial reasons and also because  I was diagnosed with kidney cancer at the same time. 



Advanced radiation techniques, such as radiosurgery, are more effective than conventionally fractionated radiotherapy. 



Radiosurgery appears to be safe and has prevented local recurrences in my case, than conventional radiation which caused white matter changes representing chronic ischemic changes. I couldn't afford a cyberknife and underwent conventional radiation therapy in 2017 after which this happened. 



Sometimes tumours treated with radiation, on follow-up MRI imaging scans, appear stable without evidence of growth even mildly shrinking every time. 




I would like to add a little bit about an unexplored safe technology


It is a new exciting technology which may help people trying to minimise collateral damage which with radiation treatments has always been the challenge. 



The precision of proton therapy can be critical for protecting the brain’s delicate tissues. 


To treat more people with proton therapy is by making the technology even more accessible. Currently, this technology is available only in Apollo Chennai and expensive enough to cost an arm and leg. But in my case, they are totally confused, "It is not a straight-forward case" they remarked hence they need a fresh MRI to decide and talk to my previous doctors.



I keep myself well-informed so that I don't fall into the wrong hands. I love learning and gaining knowledge which brought in understanding, comprehension, a better grasp of my bizarre diseases, not to be afraid of death or lead an unlived life like a zombie.  Because in the end we only regret the chances we didn't take. Live life to the fullest and try bringing colour to my life. I feel alive, not just breathing. 


My only wish is that next World Brain Day will be dedicated to Leptomeningeal hemangioblastomas.


Sketch by Rishabh Khushwaha and Picture by Akash Sharma  Amish Masarani

From: https://timesofindia.indiatimes.com/blogs/warrior-princess/the-rarity-of-the-central-nervous-system-leptomeningeal-hemangioblastomas/

Saturday, July 25, 2020

Imagine



Once upon a time, there was a Queen with the power of love and determination bestowed upon her. She had a daughter and when the daughter asked her 

 "What will I be?" She replied,

 "The future's not ours to see, but whatever comes your way face it, never be a dreamer, be a doer."


She belonged to a large royal family of proud descent but nobody thought her the joy of the family and had any compassion for her. Mother was the supreme nurturer and protector but the others ruled over her.


She was a nice, bright, lonely, unhappy girl who sat alone and silent without any playfellow thinking,

 

" If only I had someone who would kiss me and  understand my pain."


But her heart was like a sponge, sucking up feelings and emotions, even pain. She was born with the soul of a mermaid who could only suffer pain. She couldn't even confide in her mother.


Nobody was concerned or cared about the trifling little spirit being engrossed in the glory of their own story. She found herself sorrowful and alone but she couldn't mourn or weep or express her suffering although her heart shrieked and howled, she never uttered a word.


She was never very sociable and children used to make fun of her and refused to play. She had nobody to talk to. Oh! how she desired to be sitting with other children prattling away merrily, joking and talking nonsense. She had to turn to her mother who was her source of all love, nourishment, comfort.


This made the little girl terribly lonely as she needed some solicitude against the deluge of solitude rising from below as she was condemned to live in loneliness, never known before. Black heavy clouds covered her life, thunder rolled and amidst the bustle and noise of existence, she found herself lonesome, by herself. 

In her loneliness riding the wings of time thingummy, dryads and vivid colorful fairies appeared and whispered in her ears

“Don't feel sad, we are all princesses in God's kingdom”.

 

They played and danced with her and made her happy and laugh and told,

 

“Someday you will come out of your loneliness and meet the greater world, wage wars and win them! You'll be the warrior princess!”



The time came when she was rejected at the highest level and brought anxiety with it. Hah! Pain? Nobody cared if she lived or died because it will bring them to gain. King of Darkness tried his utmost that she dies.


Her father, the White King perished suddenly and left his family in difficult pecuniary circumstances which was a devastating blow to mother and daughter but all-powerful mother guarded her daughter with patience and fortitude.



In the dismal netherworld The Restrainer, Yama sat on his throne with his noose turning his moustache proudly and asking his accountant Chitragupta who is to be judged next. Somnolent Chitragupta came yawning ahead with his massive register and announced the girl's name. 


Yama was standing beside the procedure bed ready to toss his noose to get the soul of the girl. He is famous due to his responsibility for good decision-making based on records of a person’s deeds. But looking at the bold and daring guiltless face whistling a tune while the stretcher was pushed to the operation theatre he got flabbergasted and called his scribe Chitragupta, who fetched his logbook to check if the name was really there or not. Yama is also known as Dharmaraja, King of Justice, he is the punisher of the wicked but couldn't find any wickedness, vice, immorality in the girl's deeds or her parents. Scratching his chin he returned to his palace in the netherworld.




Help preserve my daughter! Mother begged the apothecary. While facing a horribly wicked malicious fate she never screamed with terror or annoyance.


In the midst of hunger, worry, for medicine and struggle, staying in a strange house, the girl was ambushed by a pathogen, a bug who came blowing in the wind and made the host suffer from every breath.


Wheezing like an accordion, panting for breath, coughing up blood because the sinister pathogen had not only invaded her lungs but travelled to the lower limbs through the lymph nodes making them throb like the sound of a drumbeat, she answered walked through the dark path every day, walking with faith that she was headed for sunshine.

As she made it through one ailment, another became ready to charge ahead. Once again in an extremely confusing situation, Chitragupta, the bookkeeper of the God of death, Yama made her sign the logbook when she was hooked onto machines, punctured with needles and tubes were going through them inside the operation theatre and Yama was standing behind nodding his head. She sat up, mustered up all her strength, saw her mother's face in front of her eyes and signed. Then when she laid down she showed an upturned thumb to them for luck. Yama covered his face, the Oh, no! It was a sure catch but he missed this time too! The way she was sneaking out he wouldn't ever capture her it seemed. This time too Yama could hear she was whistling inside her mind



Then again a fierce situation came and her heart stopped jumping with joy, enjoying the elixir of life and she learnt to shed tears of wicked pain hugging her mother at night when she felt her soul screaming out with the agony and howling in pain. She hugged her mother and muttered and cried as electricity went through her brain. She had a lancinating pain as if a live electric cable was held against her eyes, cheeks, jaw and teeth.

 Battling the darkness of pain and intolerance through the thorns of adversity, with her creativity she triumphed over the deepest fears of the subconscious. 

The creation of Man is supposed to be God's best job, greater than the animals with morals and principals but they have turned out to be leaders in their dominions and its authority which is supreme and impregnable. They practice killing weaker animals and are selfish by nature. They are the most miserable creation who only care about themselves. While travelling to road from childhood to adulthood she has witnessed that.  The widespread disease has brought out the worst aspect of human character!

She turned on the radio and found a station and enchanting music floated in John Lennon's voice.

Picture credits : Amish Masarani

From : https://timesofindia.indiatimes.com/blogs/warrior-princess/imagine-2/


Wednesday, July 22, 2020

A strong, fearless, badass unicorn




In my childhood when I read the story of Prometheus creating men, I never knew it would change my life. 


Prometheus was entrusted with the task of sculpting Mankind from clay to populate the Earth.  He was filled with grief as he found them living in caves in miserable conditions because there was no fire.

He went into direct conflict with Zeus and when Zeus withheld fire he disobeyed him and stole fire from heaven as a gift to Man. Zeus, the ruler of Mount Olympus had no compassion for Man and he meted out punishment for this daring crime to Prometheus.


Prometheus was chained to the Great Caucasus Mountains where an eagle was set to feed upon his ever-regenerating liver.  It made me realise the regenerative capacity of the liver later in life.  



My story is from riches to rags. Those heartless relatives...when I needed them most…the foxy ones conspired and deprived me and the rabbits turned tail and fled, fearing I might ask them to help me or stand by me. Family is not about blood bond, it's about willing to hold your hands when you need them most. 


We are all familiar with the phrase “Pandora’s box”. Out of his fury, Zeus ordered the creation of “Pandora” who opened a coffer bringing into the world pain, diseases, misfortune and all hurtful things and closed it leaving hope inside.


Within four months of a brain surgery for which my father ran across India in search of a suitable hospital, I had strange symptoms and vascular tumours were detected in my liver but due to lack of money, they were left untreated. The tumours grew and studded the liver in a way that transplant was the only way out. 


Devi Parvati sculpted a son to guard the door of her palace. When Lord Shiva tried to enter he drove him back and all the Gods. While Ganesha was involved in a duel with Lord Vishnu, Lord Shiva moved slowly from behind and cut Ganesha's head with his trident. Lord Shiva agreed to bring back Ganesha to life and grant him divinity. Lord Shiva did the first mytho-historic transplant surgery and Ganesha was brought back to life.


After the transplant surgery, Lord Shiva is believed to have given Ganesha an elixir to drink. One cannot help speculating if this was some potion containing an anti-rejection medication.



But I didn’t despair and kept looking for hope and I found hope amongst mankind not tied to me by any blood bond. I survived a landmark liver transplant with the funds acquired by donations. 


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 tumours throughout their life. VHL may occur in up to 10 organs of the body also there is a possibility of neuroendocrine tumours.



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.


Today we are aware, the liver is the most active organ in the body with the power to regenerate itself after large portions of it are removed. Liver functions normally even after seventy per cent of it is removed and can grow back to normal size within a few weeks provided the remaining thirty per cent is healthy. Thus, a living person can donate a liver out of affection and go back to normal life in a matter of days. This saves the lives of patients with chronic liver disease. Liver transplant is safe and possible due to this uniqueness


My father perished soon after the transplant and my foxy uncle took our house from us and we were left penniless and homeless. It was then that my real tough times began and we had two choices ...death or preservation of life.


Not only we faced shocking poverty where we didn’t have money for food the next day, but I acquired MDR- TB living in shabby houses and changed houses seven times hounded by landlords. 


My brain literally changed in chemical composition when I understood the frightfulness and the oddity of my nasty lingering illness and its larger economic implications.


 When in poverty, you face medical embarrassments, the humiliation of asking for financial help, physical suffering which is always there money concerns for food, medicines and rent.


Living in a lousy cramped house I faced many acts of kindness,  many acts of madness but didn't flop down to the bottom. Itching or scratching diseases have solid attention from the government and the public but in my case, many vociferous suggestions, whispering advice came to me disapproving my smiling visage.


 My brain tumours are the rarest ones from 1902-2013 only 132 cases have been reported globally. A fellow remarked after he saw the picture of the scan of my brain tumours

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


I was told I can't live beyond a few months. Soon as the countless tumours would continue to spread would put pressure on the brain and spinal cord and cause herniation and compression of respiratory centres. For the past seven years, I have tried to search for anyone with my kind of brain tumours but till now I have been unsuccessful. 


One of those tumours sitting atop my optic nerve in the brain makes me partially blind.  

It was a warm October morning when in a merry mood I sat down with a book when out of the blue something zapped across my right eye. There was a lancinating pain as if a live electric cable was held against my eyes, cheeks, jaw and teeth. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. I underwent an MRI scan and was diagnosed with bilateral trigeminal neuralgia also known as " suicide disease" because it is the most excruciating pain known to humankind.

I was lucky enough to get a cyberknife with the help of crowdfunding just before the lockdown. It reduced the pain but I have it on the left side too which is pending. 



In the absence of government policy, the court has stepped in to develop a law and provide treatment for a rare disease, only lysosomal storage disorder patients get support from the government.

Somewhere in the Constitution, I have been given the right to live but I am being denied that.


I live with my sixty-seven-year-old mother and she is my caregiver. Our only income is her seven thousand rupees pension and in this crisis of the pandemic we are facing a lot of hurdles: not getting my treatment in proper time, proper food and also with rent, electricity and water bills but I believe God has made me with some good end in mind and is watching over me and the wreckage of my life will be sorted out by him. 


 I want my tangible trace existing after I am gone.


There's really a good chance of getting old with silver hairs if my venerable disease gets an opportunity for good treatment, my potentials are realized and my battle with the selfish people ends.


 I got a new lease of life after my liver transplant and every year I celebrate the day as my survival day. After fifteen surgeries including two cyberknife, and two radiation therapy I feel life is delightful. I was given a one-way ticket to this world but I could have got the life of a vermin- a mere bug being crushed under the feet or not having enough intellect to enjoy the sun poking its adorable head from behind a cloud…the star-studded clear blue night sky… or the grand sound of the thunder and with it the soul waking up or watch the iridescent play of colours of the rainbow.


I might add a finishing touch,


" When you hear hoofbeats think of horses, not zebras" … 


In medicine, the term "zebra" is used in reference to a rare disease or condition. Physicians are taught to assume that the simplest explanation is usually the best so as not to go around diagnosing patients with all sorts of unfamiliar illnesses that are highly unlikely. Common diseases are what doctors should expect to encounter.


Many medics seem to forget" zebras" exist and so getting diagnosis and treatment is difficult for those who have a rare disease.


While spending hours in front of the silvered mirror admiring the scars of a liver transplant, kidney cancer, incisional hernia repair which led to the unfortunate debridement, all I see while looking at myself in the mirror is a strong, fearless, badass Unicorn.


 When life was sliding out of me 

Hope roused the warrior inside me

 And I started my journey


From https://timesofindia.indiatimes.com/blogs/warrior-princess/a-strong-fearless-badass-unicorn/