Vasudev kutumbakam

Thingamajig dryad did gaze the distant moon

puzzling society madeth h'r swoon

oh! well, palmy community

with spunk did face fak'ry

dry-ey'd unruffl'd with a tra-la-la tune!

" Thou ragamuffin! Thou miserable creature!”shriek'd Mr Blessing quite out of breath t'rribly ov'r the phone.

"Vasudev kutumbakam" wast a bawbling group of cater-cousins who  hath believed " the w'rld is one family" and as those gents wend through the w'rld togeth'r, those gents'll standeth by each oth'r and ev'ryone those gents encount'r.

Th're wast a giant involv'd in the writing of an absurd comedy to exciteth the creative side of a man’s nature.  That gent wast a valorous sir who is't but did wish to holp people out of ado and 't wast his proposal to f'rm a group 'long with Madam Cloud.

The oth'rs w're pompous in their vanity icily did scream at the valiant soldi'r like a toad, ugly and venemous w'rds, m'rciless w'rds of disdain.

“Oh, indeed?” was her response. "Thou mayst not knoweth what kind of a mistress i am, i wast b'rn a princess, i am a warri'r princess".

"If thou hast strength, showeth us.  Thou art a spook, a phantom yond's wherefore fate hast hath left thee in darkness"

She  hath trusteth in the blasé lackadaisical fellow whose jointress the lady hadst holp with the doct'r f'r h'r min'r ailment

“Now, dram mite of a mistress, who is't doth thee bethink thou art? a princess?"

"I wast b'rn a princess, a warri'r princess and nobody speaks to me liketh yond, alas thee!"the lady hath said with valour.

Wheezing liketh an acc'rdion, panting f'r breath, coughing up blood because the sinist'r pathogen hadst not only invad'd h'r lungs but did travel to the base'r limbs through the lymph nodes making those folk throb liketh the soundeth of a drumbeat, the lady answ'red: "you bird brain, i am a divinity presiding ov'r f'rests and trees through which i walketh ev'ry day, walking with faith yond i am head'd f'r sunshine. "

But 't wast liketh living with bombs in h'r lungs.  The lady kneweth h'r self-w'rth, the lady hadst no conc'rn f'r mat'rial things but most wondrous inn'r pow'r and strength, the lady wand'r'd high-lone did inspire by mum's mettle without regard f'r circumstances. 

 

the lady wroteth a poem to expresseth h'r battleth,

A warri'r princess i am, 

i wage wars with headeth did hold high, 

a warri'r, nev'r afraid of wounds, 

a warri'r dies dancing that’s who is't i am. 

  

trudging hills nev'r trodden by, 

propell'd into unc'rtain t'rrit'ry, 

soul deeply wound'd by black melancholy, 

nev'r stooping to feareth 'r sentimentality, 

chasing desires, not waiting f'r fate to showeth m'rcy;

flowing f'rth with by fate delighteth in stark reality

Gloom of doom cometh what may;

did banish all w'rries, doubts, 

i hath moved onward in the track valiantly, 

imploding yet ebullient in a spree, 

compound'd difficulties, bitter cold mann'r can’t faze me,

benign friends expresseth f'rvency. 

 content with myst'rious, meaningless, contradict'ry, hostile, 

unexplainably warmeth and giving,

fearfully enclos'd minds,

i hurtl'd the absolute randomness, 

on the v'rge of unc'rtainty.  

 

 proff'r'd relations, friends, unfailing supp'rt,

 bravado, m'rcy, pity, arrogance,

a lon'r did rush f'rth in the path of life. 

 “pretty-nigh impossible!” wast toldeth ad infinitum,

equivalence did seek,

yet situations, reasons, causes remaineth distant,

the exactitude of suff'ring hast nev'r been met'd out to none 

Halt! patience!

i heareth people screameth,

but i'm at a pointeth of nay returneth.  

  

i’m brave, i rave,

grave only at which hour repressed,

cramm'd with mem'ry, hoarding much,

did endure much, weary of wounds,

feelings which hath built up in the war,

harden'd and did die inside,

soul searcheth'r i am,

reality seemeth absurdity,

kind, affectionate friends,

elevate me, eke out positivity

I still dareth to changeth the things i can,

i resuscitate ceaselessly,

i wage wars with v'rve

in a pointeth of nay returneth

aye, a warri'r princess i am. 

 

wild bouts upend'd direction, 

infallible friends f'rm'd mine own legion, 

did march with me without regression, 

did fly fearless without reasoneth, 

melancholy did replace by undying optimism,

did turn to mem'ry,

w'rries did banish, nev'r did look backeth in hist'ry.  

  

prettify, n'r falsify nay one,

those gents art but f'r a season,

gath'r'd to esc'rt the lost one,

by way of cosmic expression,

collective counsel mitigates privation

H're cometh the season

of faces blurring and fading hence

liketh a dreameth, in illusion. 

 

 life: - annus mirabilis!!

 chain'd me in an endless cycleth,

 not unfolding its myst'ry af're. 

 

life is a game of chance;

did grant once;

temp'rary stayeth wag'r'd

to expire, i thus learneth;

ent'ring the reality maketh thee standeth

in a tricky, dang'rous position,

whence, thou art in a pointeth of nay returneth. 

  

thus i welcometh changeth with open arms,

groweth and liveth vibrantly not in a trance,

soul dance​,

immense shall billow liketh a toweth'ring tsunami;

summon up the courage to liveth life once,

regression dishonour eff'rts and maketh those eff'arts undone,

thus i moveth on with fluency

friends not did attack by dubiousness;

tryeth utmost to f'rm a supp'rtive system;

don’t believeth living in ‘jocund company’

dying high-lone in ign'rance;

those gents wanteth to evolve from darkness;

tries revamping mine own life in earnestness;

those gents art not friends f'r a season, but a lifetime,

i hurtle the chaotic reality in their gl'rious presence,

i resuscitate ceaselessly,

wage wars from a pointeth of nay returneth. 

 a warri'r princess, i am

“I am not well: mine own headeth acheth badly.  at which hour the lady did seek supp'rt from the tend'rest one, madam cloud. 

 " O' God, wherefore dost thou, God giveth disease and mis'ry to thy children?" spake madam cloud.

At which hour h'r landl'rd threaten'd to turneth h'r out at which hour the greatest troubleth did creep up and did pause at h'r exit dragging h'r to death the lady did seek the holp of the giant and that gent f'rgot about his big speak of standing by oth'rs, helping those folk through rainy days.

The lady wonneth h'r battleth with canc'r of h'r kidney and brain tumour and hath left in the stipulat'd timeth given by the court but unf'rtunately, the lady's blindeth with the same eye.

The lady hadst the strength to mast'r h'r emotions and f'rge ahead.  The lady wast brave enow to believeth in h'rself and hadst nay feareth to holdeth h'r backeth.  The lady hath found positivity, excit'ment, warmth, vitality out of life while writing this st'ry.

While spending hours in front of a silvered mirror admiring my scars, all I see is a strong, wild, badass Unicorn 🦄.

Death stalks all of us upon this planet! Nevertheless, had it not been for the confusion of the struggle I would have been circumscribed by short boundaries of my pain and suffering squealing with fright. 

When I had two surgeries back to back and the doctor said, "Everything is in God's hands", and I came to unexpectedly with drainage tubes and wires hooked up onto me and were discharged from the hospital with two with drainage bags dangling on both sides I had to just switch off my mind from the physical confinement of pain, facing medical embarrassments, the humiliation of asking for financial help to pay the hospital bill for the sudden surgery because it happened during the time of demonetisation. 

Physical suffering is always there with a rare disease and especially when doctors go wrong. But I was never aware of a pain that lingers long,  very, very long.

I always thought comfort lay in the knowledge although it is hardly worth reading or knowing about if you feel fear softly following you along the darkening streets of life, you got to understand that information, awareness, understanding, depth of thought dispels fear, worry or stress. Sitting in the darkness I started seeking knowledge of the ways of nature. A dark gloomy world, it definitely seemed but I read whatever I could lay my hands on.  I have a serious condition known as "Abibliophobia" but I am not here to explain that.

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

The rarity of CNS leptomeningeal hemangioblastomas. 

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. Although brain tumours rarely metastasize outside the central nervous system (CNS), disability and death occur with brain tumours 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.

There are more than 120 types of tumours of the CNS.

Neuroepithelial tumours are the most common and feared tumours of adult life and occur most frequently as astrocytoma, oligodendroglioma, and ependymoma.

Leptomeningeal hemangioblastomas are perhaps the rarest sort.

What is a hemangioblastoma?

Hemangioblastomas (HBs) of the central nervous system (CNS) are histologically benign, slow-growing tumours, which may occur as sporadic lesions or in association with von Hippel­Lindau (VHL) disease.

What is von Hippel-Lindau or VHL?

von Hippel Lindau is a very rare disease. 

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 a possibility of neuroendocrine tumours.

What are the leptomeninges?

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.

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. 

Bakshi et al3 described a 55-year-old patient with disseminated intradural masses involving almost the entire spinal cord on magnetic resonance imaging. They reported both extramedullary intradural tumour with numerous leptomeningeal nodules and microscopic infiltration of the spinal cord and coined the term leptomeningeal hemangioblastomatosis to define this condition. 

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. 

Treatment

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

My experience with leptomeningeal hemangioblastomas for 7 years? 

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.

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.''

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 and become symptomatic. 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 an RCC ( kidney cancer) at the same time. 

Advanced radiation techniques, such as radiosurgery, are more effective than conventionally fractionated radiotherapy, but it is difficult to perform high-dose radiation therapy or radiosurgery for numerous lesions scattered throughout the brain. 

Radiosurgery appears to be safe and has prevented local recurrences in my case, with fewer sessions 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. 

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.

Proton therapy can limit the amount of normal brain tissue receiving radiation. That reduces the effects on important functions, such as vision and hearing.

Proton radiation may be less likely to damage nearby organs, such as the heart and lungs while treating areas around the spinal cord. This technique is safe and potentially effective.

Often, people with these recurrent tumours have received significant radiation doses in the past to important parts of the brain. These may include optic nerves, which are critical to vision, and the brainstem, which regulates many essential body functions, such as breathing, heart rate, and swallowing. 

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.

If only, governments or some trust or Institute sponsors the high cost of my treatment. I could have a better and longer life and my quality of life would be better. 

References

• Hemangioblastomas with leptomeningeal dissemination: case series and review of the literature in journal Acta Neurochirurgica.

• Supratentorial leptomeningeal hemangioblastoma resection after preoperative embolization Lee, Ching-Yi, Chen, Shiu-JauLanguage: English Journal: Formosan Journal of Surgery.

• Journal of Korean Medical Science, article Arch Pathol Lab Med--Vol 132, January 2008- Intradural Extramedullary Leptomeningeal Hemangioblastomatosis and Paraneoplastic Limbic Encephalitis Diagnosed at Autopsy

• Journal Neuropathology -A report of supratentorial leptomeningeal hemangioblastoma and a literature review 

• Power and Precision: Proton Therapy Can Target Brain and Spine Tumors with Fewer Side Effects

I might add a finishing touch,

" When you hear good eats think of horses not zebras" … 

This is told to medical students throughout their training. 

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, partial nephrectomy, incisional hernia repair which led to the unfortunate debridement, when I asked the brightest medical mind

 " Am I going to die?"

His rejoinder was

"We cannot let that happen, you are our precious patient." but the surgeon who was supposed to do the debridement said

" Everything is in God's hands"... I nodded and the very next morning they made arrangements for my admission and surgery. While I was hooked onto machines, punctured with needles and tubes going through them inside the operation theatre I was made to sit up and sign some sort of register. When the surgery was a success I showed an upturned thumb to the doctor because God helped him see the right path.

 So, all I see while looking at myself in the mirror, what I find is a strong, wild, badass Unicorn 🦄. 

Mermaids and unicorns are among the world's best-known mythical creatures but bats🦇 aren't. So, why such a delay in tracing the origin of the virus which spread and triggered a global pandemic creating a historical health crisis and a deeply distressing and disturbing experience for many? 

Blowing in the wind

There was once a little girl and nobody felt any compassion for her. She grew up amidst a lot of bawling and screaming and  she 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. Since mermaids have no tears she suffered more acutely.

Nobody paid any attention to her, nobody watched and cared for her. At a tender age, her delicate little feet felt like knives were being driven through them.

Nobody was concerned or cared about the trifling little spirit being engrossed in the glory of their own story setting a sharp pang which pierced her heart. 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. At school or home, she had nobody to talk to. Oh! how she desired to be sitting with other children prattling away merrily, joking and talking nonsense. 

Nobody read her charming stories and she slept heavily only to wake up in the morning after having hideous nightmares.

It is certainly a good fortune to belong to a well-to-do family but when you are the only girl child of the generation belonging to an orthodox family, it doesn't necessarily mean that they would be delighted in you and faithful to you. Parents were exactly the opposite of the family members and took care of the girl until the next child was born. They fussed over their second child because he was visibly ill with incidents of abnormal electrical activity in his brain.

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. It felt grim in the pitch darkness where you couldn't see a single object but her eyes twinkled and shone and she took tiny steps ahead holding onto whatever bush or creepers came on the way in her journey.

The embodiment of "Aum", the Creator, sat on the mountain peak at the core of creation lost in meditation but with his extra eye and wisdom, he watched her every step.

The time came when abandonment, desertion was in full swing and brought anxiety with it. Hah! Pain? Nobody cared if she lived or died because it will bring them to gain. 

Mother guarded her children and stood on the lookout for any storm as the conspiration went on a molecular level. 

In the dismal netherworld The Restrainer, Yama sat on his throne with his noose and Danda-the rod turning his moustache proudly and asking his accountant Chitragupta who is to be judged next. Chitragupta came ahead with his massive register and announced the girl's name. The two great hounds with four fiery eyes started drooling.

Mother guarded her little nestling by wrapping her wings around her while her father flew away. Standing on one leg, day-to-day she stood like a grand sentinel. She continued her task spiritedly and even in her sleep, she continued to pray earnestly to the power from which the entire universe has emerged.

She lifted her tearful eyes towards heaven and prayed,

" O' Mother of the entire universe, do thou help me! I must venture, although I have been duped, swindled, deceived, betrayed and everybody has left me, I shalt not be denied help from heaven, it's my duty to protect my children from the torrents of rain. I can not abandon them."

Heaven smiled at her courage and perseverance.

She trained her other child to face every hurdle beautifully and become self- sufficient and he developed his own morals and values and didn't wander off into the wide world while flying high.

Help preserve my daughter! She begged the apothecary.

While facing a horribly wicked malicious fate she never screamed with terror or annoyance. Her daughter faced the knife with a sweet smile and sparkling eyes, never looking like the picture of grief. 

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 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.

Then again 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 with every breath.

While tending her daughter, Mother lifted her eyes filled with vitality towards the Heaven  and asked,

' O' the God of Wind, you are vital to life, you are Prana. Why the suffering? Why the distress?Why the pain?" 

He whistled away making the windows rattle while a phenomenal "Aum" resounded from the centre of the universe.

A disembodied voice rang in her years,

"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. What she's suffering is the karma of her past lives, it depends on her reaction towards her sufferings, how she is going to cope, get along, manage."

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.

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 the ruler of the clouds and skies, the God of Thunder and Storms wielded his weapon, lightning and thunderbolt and sent electricity through her brain. She had a jabbing pain as if a live electric cable was held against her eyes, cheeks, jaw and teeth.

Her first feeling was of anger but as the pain ebbed and flowed she felt ashamed because anger, bitterness, outrage is sin and she didn't want more bad karmas in her life. God has given her lifelines because of her deeds but she didn't want her lifelines to be taken. She found the sun shining gloriously, singing birds and celebrations with mum so delightful. She understood how her mum had been exploited and overburdened by her in-laws, how she had taken care of her 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. Now she realised her pain is indescribable, unspeakable, disgusting but so is mum's life-long struggle.

As she read the headlines "Girl raped twice by father during lockdown while mother stuffs cloth in her mouth". She was filled with revulsion, nausea and felt sick in the stomach. This is Kaliyuga, how people have changed. Every day she prays for the same mother in next life, if it really exists. Perhaps in the next life, she'll be able to really care for her, as of now she is dependent on her in many ways but still, she resolved to put in her best efforts. The widespread disease has brought out the worst aspect of human character! Thinking this she switched on the radio and listening to the song went towards the window.

As Bob Dylan was singing 

"How many times can a man lookup

Before he sees the sky?

How many ears must one person have

Before he can hear people cry?

And how many deaths will it take 'til he knows

That too many people have died?

The answer, my friends, is blowing in the wind

The answer is blowing in the wind

Oh, the answer, my friends, is blowing in the wind

The answer is blowing in the wind"

She looked heavenwards and saw the God of Wind mounted on a deer held his hand up as if he was blessing and the next moment Lord Hanuman flew past carrying a mountain on his palm and looked at her winked, and dissolved into the clouds.