Burning Brain Diary @rohit-blog - Tumblr Blog

And Life Goes On...

Its been a bit of anti-climax I must admit.

Around a month back, when this whole thing started, after the initial shock, I was actually in a bit of super excited mode. This seemed to be the chance to really take stock of my life and correct things - all under some sort of a timeline imposed on me (situation when I work best).

And yes, life did seemed like taking that new meaning for a few weeks. I became purposeful, and thoughtful in everything I did. My relationships improved in general - atleast partly because M seemed to care about my situation and sympathized with me. For a little while, I did think that a Brain Lesion was perhaps not all bad.

Fast forward a few weeks, and things are (annoyingly) getting back into autopilot mode. M could not really baby me too long after the initial novelty wore off. Not that I blame her - I am glad she did what she did for me when she did it. I don’t really have much right to expect anyways! Anyways, without going into too many details, we are where we started.

Personally as well, once the symptoms wore off, I have also started to get back in the old mode. I did make a few plans, but haven’t acted on them much (travel et al).

One thing did change for good though - I am way more aware of the fallacy of chasing material things than I was ever before. I was always more on the happy side in that respect, but this experience has really reinforced that in me. I don’t really care about earning more, getting promoted in my job or any buying a better car anymore. All I care about is to spend lotta time with R, and doing things that make me happy and not doing things that dont;.

That wont happen though unless I do something! Time to do stuff.

Another Doctor Visit, Another Scare

This is getting old now... I visit the doctor, and they tell me something new explaining my condition!

So I had this 3 week followup with Dr F and Dr N today. Incidentally its been a month since that MRI that started it all.

Anyways, apparently my CT scan of the chest has shown a non solid lump in my right upper lobe of lungs. That may potentially mean lung cancer and it may explain (in a round about way) the lesion. Apparently, the human body for all its sophistication can be easily tricked into attacking the brain when presented with a cancerous tumor in some other part of the body.

So, that's the bad news. I need to meet a Pulmanologist - that's the doctor who takes care of lung cancer and stuff. To be clear, the size of my nodule is very small - 0.7 cm. So its only 15% likely to be something malignant. So, that’s the good news :-)

Beyond that, nothing specific really came up in the recent tests. there are things here and there, but nothing that makes a diagnosis to jump out. The overall hypothesis is still that its a sort of autoimmune incident. My symptoms are better now, so that’s a promising sign that the steroid treatment helped to reduce the inflammation.

The doctors want to continue the same line to treatment and also put me on a Immunoglobin Therapy to push some good antibodies in my blood plasma along with all the bad ones that my body seems to be producing. That therapy will take 6 hours every-time I do it, and I will need that every week.

Also I need a full body PET Scan to rule out similar nodules in other part of the body. So there is one more test to take. Not too worried about that though - PET scan is way easier than MRIs.

More later.

#immunoglobulin #igg therapy #lung nodule #Dr F #Dr N #ct scan

Another Sleepless Night

11/15/2015

its 5 AM now, and I have been up since 1 PM. 3 Madmen episodes is all my brain can take in a night!

Spent some time researching on solo travel. Travel is one of my big to-dos going forward, and it seems like solo is going to be the way given Mamta is not really interested. Not that I mind - I am excited as solo travel brings in a lot of new possibilities and challenges. Though, I wonder if its selfish to spend the time/money on solo travel when I could be using that on them.

Maybe not... I think I will be happier if I travel. And I will make them happier if I am. So there!

Let me try to get some sleep now,

Here’s the skinny - My Possibilities

Here’s a quick summary of my possibilities - more for my own reconciliation than anything else.

1. Tumor - It may be a tumor in the brain stem. As Doctors said, such tumors are typically slow growing and I can still have a reasonably long time-frame (10-20 years). The danger is that once it grows to a certain size, I will be paralyzed unable to do anything - even move my eyes. That’s not what I have in mind for myself. If I have tumor, I will need to figure out a way to get out just in time to not suffer that terrible situation.

2. Multiple Sclerosis - Just the mention of MS was sufficient to make me super nervous a couple of months back. Now, I am actually hoping its MS and not a tumor. The good part is, with some management, I can still have a reasonable quality of life till I grow old. Bad news is, my quality of life will be uncertain and I will lose my bodily functions one at a time suddenly. And my old age will be pathetic, and expensive. If I am diagnosed with MS, I will need to do my best to manage it well.

3. Some other Auto-Immune disease: Other options include Lupus (that I know nothing about) and tens of other less known options. All those diseases have one thing in common - my body attacking the brain cells once the brain-blood-barrier is breached. None of those options are what one will like to have, but given where I am, I will take them before a tumor or MS. If diagnosed, its likely that the treatment plans will work well enough to allow me a good quality of life.

4. Cancer: This is a more recent one. Apparently, cancer in any part of the body can trigger a series of events that may cause body to attack the brain (don’t ask me why). My CT Scan shows some stuff in my right lung that needs to be checked out. If this the cause, I might be onto an extended treatment for lung cancer. I don’t like that thought - particularly because I never smoked, I don’t deserve that!

5. Nothing: This will be super awesome, and the stuff my wet dreams are made up of nowadays :-). Maybe, just maybe, I don’t really have anything. Maybe the MRI showed a one off infection that will heal by itself. Maybe I was just being paranoid and went to the doctors when it would have just passed on its own.

Please please please please!

Dreams

Last night, I had a very vivid dream - infact, a series of very vivid dreams. I think it lasted through the night in a series of 7-8 different episodes with a common theme.

I was losing my body functions one at a time - I guess it started with left arm going limp (I could feel it, really), then left leg, then my ability to talk (I tried calling for my wife who was sleeping with the kid in another room, but could not make sound), then a general blackout with no ability to think.... I just lied there with a blank head, unable to do anything and move anything. I was aware of what I was feeling, and had a sense that it was not real.. but then, I was not sure and that was (very) disconcerting.

I guess it was just a dream after-all as I did wake up fine. But it was scary... if that happens to me, I’d not lie to live that through. Amen!

My Hall of Shame - My Dad’s Stroke, and What I Did (not) Do.

Since I got diagnosed with my lesion, I have spent good time learning more about the brain, and the common brain conditions. That’s me - always trying to be in control of things (and never end up being).. but I just wanted to know everything I could so that I could make sense of what’s happening to me.

And I ended up learning a lot about stroke - the #1 brain condition impacting people. What I learnt made me sad. Very sad because my dad had a stroke 4 years back and if I had known then what I know now, I could have helped him feel so much better, and maybe even helped him recover more than he did.

The Stroke

My dad had a stroke in Nov 2012. I remember it was precisely the time when I was running my maiden Tough Mudder race in Jersey, that my father collapsed with a stroke in India. Apparently (and its a shame that I still do not know what happened) he had a blockage in the artery supplying blood to his brain.

That was the worst possible timing as my body was totally battered with the 12 miles I ran that day (most ever in my life till that point) and was looking forward to a few days of recuperation. Anyways, needless to say I started immediately and landed up next to my dad in about 24 hours.

My hall of shame

Now to me, Stroke was just about the physical manifestation of the condition - I was sympathetic about the physical disabilities that the stroke caused - impaired movement in the left body, weakness, no/little control on the limbs etc. I remember seeing him in the drab hospital looking barely like the dad I knew.

If I had known better, I would have known that besides the physical/kinetic disabilities the stroke caused, he was suffering with much bulkier cognitive disability. Simple tasks like making sense of sound, vision, letters, numbers and terms that we all take for granted, become a jumble of random chaos to a stroke survivor. Some of us treated him like he was stupid, and not like what he was - just injured.

I remember him complaining that he cannot understand the newspapers, that he cannot read, or comprehend. He seemed distant and wanting to just sleep all the time. To all of us, including yours truly, I just took it as a sign of depression and never really thought that that was a logical impact of a brain injury.

Had I known what I know now, I would have helped him getting through that and not let him suffer the cognitive recovery on his own. I intend to correct it from now on. Though nothing will bring him back the time immediately after the stroke and I feel deeply ashamed of leaving him in his cognitive abyss all alone.. he deserved better. :-(

On that note - I highly recommend the book “My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor”. Read it if you know a stroke survivor, or want to understand more about this disease.

Timeline

This is the running record of my condition. The ideas is to document my condition so that I have a record instead of recalling from my memory

It may also help someone else seeing the similar patterns, and maybe get a step up on the course to follow.

Most of this post is factual and boring. Unless you are really intrested on what’s happening to me, skip!

Here we go:

Before June 2015: Everything normal. Ongoing medical conditions include - Asthma, High Cholesterol, Psoriasis, Lichen-Plenus, Marginal blood pressure, Marginal color blindness

June - Aug 2015: Noticed a more frequent urge to go to toilet in the night. Did not think much about that.

1st Week September 2015: Discomfort around penis tip, painful urination. Lots of tests - no infection detected, no UTI, no STD, no medication. It resolved itself after about 4 days. Started feeling fatigued, and tired. Saw urologist who checked everything and could not identify any cause for my symptoms. Anyways, it seemed to have resolved.

2nd Week September 2015: Sudden pain in the lower back, going down the thighs. Feeling fatigued and sleepy. X-Ray showed bone spurring in L4-L5 which may cause such pain. Advised physiotherapy

3rd Week September 2015: Started feeling pins/needles sensation on the left side of the body - including head, face, arms, trunk, legs and genitals. This was unusual and not explained by L4-L5. Saw Neurologist (Dr. I) out of suspicion that something was not right. Dr I did a few tests in her clinic - everything came back normal showing that the nerve functions were fine. Only thing that remained was the MRI

Oct 16, 2015: The fateful MRI scan came back with the brain lesion. Admitted inpatient for 11/16-11/19. Discharged on 11/19. Waited for seeing Doc F and Doc N again on 10/27.

Oct 27, 2015: Met Doc F and Doc N. Apparently all tests came out as negative - means they dont know if its a simple infection yet. CSF shows some signs of inflammation. Decided to put me on Steroid course to reduce inflammation. More blood tests done to rule out other infections.

Week of October 26: The symptoms went away for most part. No pins/needles sensation, no crawling feeling, no fatigue.

Nov 3rd, 2015: Started 1 Mg Solu Medrol IV course for 5 days. No perceptible change. No symptoms. Feeling good, almost back to normal!

Nov 7th, 2015: Started Prednisone tapering. Also took the PET scan of abdomen and chest for which I had to drink lot of contrast liquid.

Nov 8th, 2015: The symptoms seem to have come back. Not much of pin/needles, but more of numbness on left arm. Frequent urination, fatigue, pain in right leg, Also swelling in face, and hands - Doc F says that is OK.

Nov 14th 2015: Symptoms seems to be stable - I get numbness in legs if I sit for some time in the same position. The left arm has a dull ache through the day - nothing super inconvenient, just annoying. A bigger worry I have is that the symptoms perhaps mean that the inflammation is not healing up with the steroids. I don’t want to think what that means.

Nov 22nd 2015: Frustratingly, it keeps coming back. Not as severe as before - but have been feeling burning pins in the feet, as well as crawling on the left face since 2 days. Also, sensations on the head (both sides). Hopefully it aint’ much and just the effects of Prednisone taper.

Nov 25th 2015: New symptoms - had couple of cramps in my fingers while driving. Pretty scary as I thought for a moment that I was having a paralytic attack! Also getting double vision, especially in the evenings. I am hoping its because of tapering prednisone instead of inflammation. Only time will tell. The pins/needles sensations come and go and are primarily in my legs which is less worrisome than the entire left side of the body.

Nov 27th 2015: Did the full body PET scan. Incidentally, the radiology lab wasd the same one that did my first brain MRI. I don’t have happy memories of this place! Hopefully the PET scan changes that bit :-)

What I Think About When I Think About My brain Lesion?

I wont lie. Thinking about my condition generates so many threads in my brain. Like everything, there are goods and bads:

Goods:

1. I always hated the idea of growing up old and die because of slipping down the bath tub. To be fair, a brain lesion is way more glamorous than that :-)

2. A brain lesion is way better than being run over by a drunk driver on the busy streets of NYC. You cannot really plan all the afterlife issues, and say all the good byes as you can do in case of a finite life expectation.

However, the truth is - I am nervous. Not because I am afraid of dying (which I of-course am, but that’s not the point here), but for other reasons:

Bads:

1. I am pretty cool, and deserve a full life. Life cut out at 38 will be pretty sad..more specifically for my loved ones.

2, There is so much I wanted to do in the life, always thinking that i still have a few decades to do all of them at a more opportune time. turns out, that I might not have. That’s not good too.

3. Then, there is a question of finances. I have not made many financially prudent decisions, always assuming that I’d have more time to set things up. That means I am not going to leave my family in a as great a financial situation as I would like. I need more time to get that in order - maybe 5 more years.

4. it will just be sad - especially for the parents and the kid. I am sure everyone else will get over it quickly, but these two will probably miss me for a long time. That breaks my heart. I need to prepare them well.

I can now either cry myself buckets on the possibilities, or do something between now and when the time eventually comes to get into a better place. I decide to do the latter. Let me get to that.

The MRI scan that caused all this trouble!

We can't believe you are still walking

My doctor after seeing my MRI

16 October 2015: The MRI that changed things

Rewinding about 3 weeks back.. that's when it started!

So, I walk into the MRI place - Union Square Diagnostic Imaging to get a brain MRI. Now, for context sake - this is about a gazillionth diagnostic test I am taking in the last 2 weeks. More on that in another post. However, all of those came back normal, so I am not terribly concerned about this one.

Anyways, I walk into the place. My appointment is at 9:30 AM - so I walked it at 9:00 AM. That gives you some idea about me - extra punctual, extra cautious, extra nice to people I don’t know (and not too nice to people I do/should-be.. but that’s a separate topic).

I took of my clothes, got into a gown that immediately made me feel terminally sick and off started the MRI process. Not sure if you ever had the misfortune of having one, but take it from me - you don’t ever want to get close to that thing!

The MRI lasted for about an hour - 40 minutes without contrast, and another 20 with contrast. And I had to be still for the entire time, listening to severely irritating noises from the machine (on that note - isn;t there a technology available that can do all this without the noise?)

After the MRI, the radiologist showed me the way out, and wished me “Good Luck”... did not make much of that at that point. Pro tip - if your radiologist says “good luck” at the end, its not good!

Anyways, after the MRI, I took a short trip to the Whole Foods on Union Square to grab a bite. Got some salad and some organic drink (I can be hyper healthy eater at times). And then the phone rang - and that changed everything.

Caller: Hello, I am calling from Dr. Anna Iones office, Is this Rohit?

Me: Yes, its him

Caller: “Mr Rohit - are you close to the MRI place”?

Me (Confused): yeah, why?

Caller: "I need you to take the CD from the MRI place and call me back”

Me (Still Confused): sure, why?

Caller: "please call back”

hung up

I assumed that the doctor wanted me to pick up the CD so that she can see the full picture and not just the radiologists comments. So I went back tot he MRI center and got the CD, and called the doctor back.

Me: “I got the CD, do you want me to take this to you”?

Dr. Assistant: “No, I want you to take this CD, and go to the ER at Lennox Hill Hospital on 77 street”

Me (Super Confused): Why?

Dr. Assistant: “Please go to Lenox hill.. they will tell you more. They knwo you will be coming. Please call me once you are there”

Me (scared, confused, and I dont know what): “sure”

So ladies and gentlemen - this is how it started. Or this is at-least when I came to know that it has started.

Here it starts

Its 1:53 PM on 4th Nov 2015 and I have decided to capture how I am thinking about my days during what may turn out to be my last few days. But then, it might not and I may just laugh about these and (hopefully) remember how lucky I am to be alive.

Why I am up at this ungodly hour (for records I am an early sleeper, 10:00 PM for me is like 2 AM for most people)?

Today, I started my first dose of Solu Medrol IV, apparently a high potency steroid administered intravenous. I will probably cover why in a later post, but one of the side effects is insomnia. I cannot sleep, so there.

Why? I mean why this blog?

Honestly, I don’t know. I am an unfamiliar mix of scared, confused, excited, thankful and rage. I guess I need an outlet to say/feel I want to, without being judged or thinking about what others are thinking.

But then, secretly I am also hoping that this becomes bigger than my rambling on suck weeknights when I cannot sleep. I guess I will find the true purpose of this blog later on.. as it has happened to me a few times, most of the times, I don’t really know what I am doing till I know.

For now, if you happen to read this blog... wish me luck. At the minimum avoid being mean!

The ER: Things Went Crazy Here

So, if you read the post on how it all started, you know how I ended up at Lenox Hill Hospital ER. If not, read that first.. its dramatic!

Alright, so I am in the ER.. I reached there expecting a flurry of worried nurses putting me on a stretcher and taking me somewhere important.

Well, what happened was this - the attendant asked me to fill a form with my name and pointed me to sit in a corner till I was called. i tried to convince him that I was more critical than others in the room - some of whom were there for a bruised finger! Afterall, my brain doctor sent me to ER after an MRI.. what can be a bigger emergency? Pro tip: Nobody cares!

I did wish I had someone (er... like Mamta) to be on their case. She’d have gotten me in the minute I walked in.

Anyways, that did not happen. I waited for about 15 minutes with increasing anxiety. And then they called me in. This is how the exchange went:

Nurse: “Why are you here”

Me: “My neurologist asked me”

Nurse: “Why?”

Me: “I don’t know”

Nurse (in a hushed voice to her companion): I hate it when they walk in without knowing whats wrong

Me (making it obvious I heard her): Look, I don’t know because my doctor said she spoke to your doctors and they know. its urgent because my MRI showed something that needs to be addressed. I can call my doctor and she can explain

Nurse (a bit embarrassed): Ok, that will help

So, they talked and apparently they thought I had some sort of brain veins enlargement due to excessive fluid. The medical term being <I forgot.. to be replaced>.

Anyways, they took me in, plugged me with bunch of monitoring devices and on started a parade of nurse and doctors looking extremely worried and asking the same questions over an over:

Whats the date?

Who’s the president?

Touch your nose with left hand

Take out your tongue

...

It got tiring after a while and I asked one of the doctors on what exactly is wrong. Pro Tip - the concentration of unusually good looking people is supre high at NYC ER. Not that I mind, but such good looking people should be seen in more soothing settings.. just sayin.

I digress. The doctor told me that my MRI shows a lesion in my brain. A lesion, she explained was an abnormal texture of the brain which can mean multiple things - including a tumor, an infection, or an auto-immune disease (MS being the most well known, but HIV too). The doctor told me “With a scan like yours, I did not expect you to be walking at all”.

I will be honest - I almost pissed my pants then and there (no, I did not.. but that was entirely possible).

It was too much of information to take in there.. I felt fine physically, except for minor sensations in my left side (the reason I went to the doctor in first place). It was unfathomable for me to even imagine that could be something serious.

My brain (no pun intended) went numb there. I understood everything people told me, but did not comprehend much. Pro Tip - No matter how many bolly/hollywood movies you have watched with the hero having a fatal disease, YOU ARE NOT HIM. Don’f flatter yourself.

At about 7 PM, they decided to take me inpatient - i.e. I was spending the night there. I did not mind that - too tired to do anything but be thankful that I will be out of ER.

Mamta and Rishon came around that time... and boy, I haven’t ever been happier to see any body ever.

Tired, confused, enraged and scared.. I went to bed around 3 PM after requesting a change in room because the person next to me was way to noisy.

More later.

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