Born with a soul of a mermaid who could only suffer pain since mermaids have no tears I suffered more acutely.
my heart was like a sponge, sucking up feelings and emotions, even pain.
But this is fantasy, let's come to the scientific view behind the pain.
A likely candidate in the brain area to coordinate pain modulation with goal-directed behavior is the frontal lobe. Evidence suggests that the dorsolateral prefrontal cortex, is important for continuous monitoring of the external world, maintenance of information in short-term memory, and governing efficient performance control in the presence of interfering stimuli. However, the frontal lobe may not have a unitary role in pain processing, as orbitofrontal and medial frontal lesions diminish pain-related behaviors as seen in animals. Frontal lobe activity during pain is generally related to cognitive and attentional processing of painful stimuli. Pain modulation robustly because it requires behavioral flexibility and the ability to suppress prepotent response tendencies to guarantee optimal adaptation. Hence I have adapted to pain since I was 3 years old and it was a late diagnosis that I have a mutation in the oncogene.
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.
von Hippel Lindau (VHL) disease is a rare autosomal dominant disorder characterized by the presence of hemangioblastomas in the brain, spinal cord, and retina with associated involvement of the kidneys, liver, pancreas, and adrenals. The presence of pheochromocytoma in a patient with VHL poses a considerable challenge to the anesthesiologist. This is a report of a patient with VHL and underlying pheochromocytoma who underwent emergency craniotomy for excision of a cerebellar hemangioblastomas
The only treatment is the removal of tumors, irradiation, and monitoring but unfortunately, multiple tumors formed in the liver which compressed and displaced vital vessels and I had a liver transplant leading to turning off of the immune system. Curing vHL brings us closer to curing many forms of cancer.
All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.
The complexity of their existence, the trials of maladies forced me to struggle to live.
Unfortunately, multiple tumors formed in the liver which splayed, compressed, and displaced vital vessels and I had a liver transplant leading to turning off of the immune system.
The side effect in question? These medications may increase your risk of infection.
This almost implies that if you are taking some of these medications you will fall ill every time you pass by someone with the sniffles along with the big stuff, like the flu or tuberculosis, or end up with Covid like me.
Due to an unfortunate event, I contracted Covid, acquired the contagion.
The ingredient of life had a chat with my disabled immune system
I mean, say that you figure that
Everything is senseless,
Then it can't be quite senseless
Because you are aware that it's senseless
Your awareness of senselessness
Almost makes sense.
Isn't everything absurd
Well, if you ask me, does Covid impact brain tumor treatment? I'd say yes because I got Covid myself.
The RT-PCR test was not done in my case because I have trouble swallowing food and medicines, Here I'd like to state The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII).
Hence it might be extremely hurtful as I get pain in the pharynx and larynx and often my tongue gets paralyzed. The voice becomes hoarse after speaking a bit.
Both Naso and Oropharyngeal samples are collected. If there's a problem in the nasopharyngeal then it can be done in the Oropharyngeal sample only hence I got my CRP, D-Dimer, and antibody tested.
Blood tests at times are a good marker of inflammation and they can also give you and your doctor an idea of what is going on in your body, in particular, the C-reactive protein and the D dimer. Both of them are said to be a good testing ground for understanding what is happening in your body.
But I formed antibodies after a month and Jeevan Stambh NGO loaned me an oxygen concentrator.
After getting 15 surgeries including radio surgeries I can't give up on living. With leptomeningeal hemangioblastomas and Covid with the immune system turned off due to liver transplant I am at a high risk but I love life and my mother. I don't want to leave so early.
My heart is an endless subterranean world pounding with desires to drink in the bliss called "Life"
Supratentorial HB is a rare and benign neoplasm. Very scarce literature is available regarding supratentorial HB. Supratentorial HB, which are quite rare, were first described by Bielschowsky in 1902.
They are most commonly found in the frontal lobe of the cerebrum followed by parietal and temporal lobe. Mine was in the parietal lobe.
Embolization was necessary before the prior surgery else all will end up like me.
I recall as I came, got back my consciousness in the OT during my craniotomy in 2006 and blood flowing out from under the head and the anaesthesiologist yelling I needed more blood because my hemoglobin was dropping. The doctor didn't take enough care and put me on the verge of uncertainty.
While I was pushed out of the OT in a trolley I was telling Mum there's no sense in the left side. My leg and hand were numb. I couldn't even make a fist. My recovery is always fast and with physiotherapy, I could squeeze a softball and slowly climb the stairs.
I had no idea it was unstoppable.
All patients who underwent primary surgery for HB of the CNS. The median interval from initial surgery on HB of the CNS to identification of leptomeningeal dissemination was 96 months. I was diagnosed in 60months.
It is very rare approximately from 1902-2013 only 132 cases have been globally reported. I am not sure if anyone has the same tumors in India. From 2013 I had posted to EURORDIS and Rare disease and never found any.
Currently,I am suffering from a serious multiple brain tumor. Perhaps I am the first one in India. The small tumors floating around in the fluid used for cushioning the brain and spine tend to compress all the nerves that come their way. Hence the first nerve to be compressed was the optic hypothalamic nerve which made me blind with my right eye even after killing radiation therapy.
I got a swallowing problem. The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII).
After 2017 I also have a chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.
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.
Leptomeningeal dissemination of hemangioblastomas (HB) of the central nervous system (CNS) is extremely rare. Between 1902 and 2013, approximately 132 cases were reported.
Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analyzed is small. The most common cause of death is respiratory failure due to pontomedullary or cervical cord compression.
Early detection and aggressive management can enhance the prognosis of patients with CNS leptomeningeal dissemination of HBs. Imaging surveillance, by contrast-enhanced spinal or brain MRI, should be considered in patients with a large amount of tumor bleeding during the initial surgery.
D.r Jalali gave me an estimate of 40lakhs for both brain and spine. But when the pancreas came up he said he won't charge extra
I have no income. I write for Times of India digital without honorarium and my mother who is a pensioner draws barely enough pension to feed and clothe us, leave alone pay for my medical expenses.
The mutation of the gene is confirmed in an AIIMS.
There were multiple cysts in the pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months, I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 2 days.
Pancreatic cancer is one of the most lethal malignancies in the world, with mortality rates being close to the incidence rates. The incidence rates of pancreatic cancer is 3%. Most patients with pancreatic cancer are diagnosed at the advanced stage due to the deficiency of a standard program for screening patients at a high risk of pancreatic cancer, leading to a poor prognosis with a 5-year survival rate of <7%. Therefore, it is very important to clarify the mechanisms of pancreatic cancer progression and develop novel therapeutic strategies to improve the overall survival of affected patients.
The VHL Alliance (VHLA, vhl.org) has been working for decades with cadres of research professionals and members of the medical community around the world to better understand the VHL gene and its impact on cancer development. The VHL Alliance funds research in numerous areas including work related to that of the newest Nobel Laureates.
Thanks to this research, the FDA has approved eight drugs for the treatment of kidney and breast cancers. These agents target the regulation of cellular growth factors (the downstream consequence of elevated HIF levels).
A HIF inhibitor is currently in clinical trials for VHL and metastatic kidney cancer. Due to our current understanding of HIF, there is reason to believe that this treatment may be effective in other forms of cancer, as well.
In our vulnerability,
Looking Death in the eye
Don't make me breathe a sigh
Being grateful for every day
The brief but magnificent opportunity
Life grants
Life is but a momentary glimpse of the wonder of this astonishing universe
Not a dream or spiritual fantasy
I don't worry. I am not just struggling, I am a warrior. Worrying is a full-time job, requiring 24 hour work a day. Every day, you worry when you wake up, while at work, when you eat, even while you dream. Instead of a worrier woe-man, I chose to be a Warrior Princess, yes that's who I am.
It's worth trying to think more about how you can help the truly needy
Who hast zeal so speedy,
To those who suffer wrong
Left to their own devices are never weak but always strong
If I you'd druthers
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