Story of my struggle with multiple rare diseases – Part 2

Here I not only faced challenges in my childhood days because I never looked like I was sick, but I also looked cheerful, with big observant eyes filled with curiosity but everything was wrong internally. 

When the money-minded, relatives ditched us after my father perished, Mum with her neat and orderly mind kept her struggle with survival moving forward.

 The early years were toughest: we had no money and no idea what to eat the next day. The relations with a twisted mentality are still fighting and trying to swat me out of the way.

The challenge was thrown down our way has been quite an adventure, setbacks with hard work and luck involved.

Going down memory lane, how I survived so many surgeries including my landmark liver transplant, kidney cancer, MDR TB, and obviously fighting brain tumors more than folksies have lice on their head, is indeed a marvel, a wonder indicating God’s intervention. As mountains rose on my way it couldn’t startle and I didn’t quiver with fear.

I live in a realm where with Mum’s support I can move the mountains with determination and resolve.

I have parathyroid insufficiency or HypoPara causing Hypocalcemia and attacks of tetany.

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.

Read: Story of my struggle with multiple rare diseases – Part 1

Rare disease patients and caregivers often shoulder a considerable burden for their disease and find it necessary to educate physicians about their condition and serve as becoming their own advocates.

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 will make a big difference in my life. Doctor’s response is just a shrug.

If you don’t have enough knowledge you can’t survive such nefarious tumors. 

Once you go for surgery the blood-filled tumors would bleed spreading tumor cells throughout the brain and spine and they, in turn, would travel with the fluid inside the brain which acts as a cushion for the brain. There’s also a risk of bacterial meningitis due to the absence of an immune system.

I was told I have 3-6 months in 2013 after diagnosis… if I had gone for surgery but I was clever not to choose surgery.

I used radiation therapy for stopping the growth or mildly shrinking of the tumors. I had 2 cyberknife and 2 radiation therapy.

But the 2017 radiation therapy went wrong, my ‘ little grey cells’ are working and I became an author but my white matter was damaged.

As I was exposed to a lot of radiation in the brain, the consequences of which are white matter damage, I got chronic ischemic brain leading to 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.

But another thing happened the nerves started getting damaged and then it is assumed that the dislodged have started traveling. 

My 5th nerve has been destroyed. Other nerves too look like they are on the path of destruction. We have 12 cranial nerves right inside the neck region. If the tumors in their journey travel to the nerve controlling the lungs or heart, I will take off from the world bidding adieu to all. 

These tumors are extremely vascular. A biopsy would make them bleed resulting in tumor cells spread and 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.

I have 3-6 months now to beat the nuisance tumors. I need your help.

Perhaps I have glossopharyngeal neuralgia.Glossopharyngeal neuralgia is believed to be caused by irritation of the ninth cranial nerve, although in most cases, the source of irritation is never found.

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.

I am not afraid of death. Life has to end once you are born but I think of my 68-year-old mother. After her first miscarriage during my birth, there were problems but she wanted me and for 41 years she has cared for me as nobody would.  She is not just my caregiver but my only companion, the diamond of my life.

Animals care for their offspring for some time and teach them to eat, walk, how to get food or fly. But at one point in time, they leave them to make their way in life but that’s why my mother is unique.

“An’ why? Because…because I got you to look after me, and you got me to look after you, and that’s why.” -John Steinbeck

She has no one apart from me. She’ll be shattered and I honestly worry about her. Only her care has kept me alive and now the hell will break loose and she won’t be able to tolerate it…we have a great bonding… My appeal kindly contribute…




Views expressed above are the author’s own.


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