Tag Archives: brain surgery

Thank You For Being A Friend

“In sickness and in health.”  Little did I know, a year-and-a-half later, the impact that this phrase would have on my life.  As I headed back to work this morning, I was emotional – overcome with emotion that I had been nursed back to health and able to resume living my life as I had previously.   I am grateful beyond words for all of my caregivers, but especially Ashley.  Over the past month, you have shown me the true meaning of love and what marriage is all about and I could not ask for anything more.   Thank you for all of your support, guidance and encouragement – I love you!

“3 Soldiers Attacked with a Knife in France”, “100 Bodies Found in Police Station”, and “Taking Selfies Likely Caused Plane Crash”; three real-life news headlines from this evening.  If it bleeds, it leads and if you pay too much attention to the ever-present media, the world can seem like a dark and dangerous place.  In today’s world, it’s easy to fall prey to a negative outlook.

When Chris’ surgeon walked in the room to advise us that he would need yet another brain surgery, my heart sank.  While it could always be worse, my anxious self jumped to the worst possible headlines: “Chris Unable to Speak or Function After Brain Surgery” or  “Surgeon Finds Cancerous Tumor Cells After All”.  As humans, we try to remain positive when life throws obstacles in our way.  As caretakers for someone suffering from an illness, we attempt to remain strong, but it’s difficult to not feel defeated or consider the what-ifs.

Despite all the negativity, anxiousness and downright scares that Chris’ new surgery brought, one positive theme emerged: human kindness.  The minute people found out the news, I was overwhelmed with hugs and true concern in the eyes of family, friends and co-workers.  Dinners were prepared for us, visits were made, care packages and cards with inspiring quotes were sent.  photo 1(2)During the surgery, at my most vulnerable, I received countless messages sending love, encouragement and all the luck I could accept.  I was simply uplifted.

While I believe it is important to stay strong and tough on your own, it’s in others’ compassion that we find strength when we need it most.  As a person who needed to be someone else’s rock, it was you that helped me persevere.

photo 2(1)So thank you – all of you – for reminding me to ignore the headlines and to remember that good in the world truly does exist.

If You’re Lost And Alone, Or You’re Sinking Like A Stone, Carry On

I am suffering from cabin fever.  Sitting home, recovering from a brain tumor is painful.  Literally and figuratively speaking.  Time seems to move at an unbearably slow pace and you find yourself reaching for painkillers throughout the day.  So, I decided to offer-up some tips and advice if you’re gearing up for surgery or are home recovering:

  1. Take it slow and easy – it takes a long time to feel better.  You’re probably thinking “Duh, no kidding.”  But if you’re like I was before my first surgery, you may not know what to expect and will find yourself afterwards asking “why me” and “how did this happen?” repeatedly.  Over time though, you will feel better and some days will be better than others.  Stay patient, stay hungry but do not try to push yourself.
  2. Your head will most definitely hurt.  Though the headaches and feelings of discomfort subside within a few days, you will feel as though your scalp is being pulled in every direction for weeks (or even months – so I hear).  This is normal and will get better with time, I swear.
  3. Speaking of your head and pain – take the prescriptions provided to you.  You’ll go home with prescriptions such as painkillers, steroids, acid reflux, not to be gross but digestion problems (thanks anesthesia!) and blood thinners.  Between your hospital stay and when you are discharged, you’ll be on more medications than you probably have ever been on but put your fears aside and take them as prescribed.
  4. Watch out Barry Bonds and Mark McGwire – I’m on steroids too.  Okay, so that’s an exaggeration.  The steroids you’ll be on won’t turn you into a homerun-slugging monster, but they will make you a raging food-frenzied, sometimes angry monster.  After my first craniotomy in 2008, I was prescribed such a high dosage of steroids that I just wanted to eat everything in sight and developed an aggressive personality at times.  Yet, the food tastes so good!  In a steroid induced rage one night in the hospital, I devoured a dish of pasta carbonara in a matter of minutes and had cheese and pasta hanging off my mouth and down my chin.  I imagine it was not the prettiest of sights but I didn’t have to witness it.
  5. You’re not a fire-breathing dragon.  Yes, you read that correctly and here is what I mean.  After major surgery, you will wake up feeling as though your throat is on fire and any time you open your mouth, flames will come out.  This is just an effect of the breathing tube that is inserted during surgery but within a few days, the feeling will subside.
  6. Water is good.  Once you wake up from the anesthesia, one of the first things you’ll want to do is chug a giant glass of ice-cold water.  So long as you’re not water or fluid restricted, your nurse should provide you water.  My advice though – take it slow.  If you drink that icy-cold water too quickly, you could get nauseous.  Heed caution.
  7. You will probably wake up from surgery with all your memories intact.  I was startled by this.  However, this depends on where the tumor was and the manner in which your surgeon operated.  Due to the location of my tumor and with each my five brain surgeries, I woke up from each feeling no different.  A recent study claims that the brain can reboot itself after surgery and the administration of anesthesia.  The brain is, simply put, amazing.
  8. It takes a long time for your nerves to regrow.  Let me be honest – when your surgeon drills your skull open, your nerves are severed and the surrounding tissue is damaged.  But with time,things will begin to feel “normal” again and you’ll start to feel better.  Your life will return to normal and you’ll feel like your old self again.
  9. Rehabilitation may become your new daily routine.  Following my first surgery, I could not talk, form sentences, recite the alphabet, read, tie my shoes, etc.  I needed intense rehab and even still, came up short on living.  Take it day-by-day and do not expect a whole lot out of yourself, especially at first.  Recovery is a process and not an overnight fix.
  10. Treat every trip out of the place that you’re in like a field trip.  Seriously.  Whether it was going to the grocery store, the post office, outside to test my arm strength, a restaurant or any other place, I was elated.  Last week, Ashley got me out of the house and went to Starbucks!  I was psyched.  If you’re worried like I am that someone will see your scars and look at you differently, grab a hat or ski cap to cover your head and live!  You’ll be happy that you did.

Accomplishing these ten things will not only give you a sense of achievement, but it will also provide you a sense of pride and victory.  Recovery can be a dark, lonely place but if you’re able to make the best of the days, you’ll find that it isn’t so bad.

It’s The Eye of the Tiger, It’s The Thrill Of The Fight

Well, here I go.  Finally, twenty-two days removed from hearing that there has been a regrowth of the tumor and that an operation is necessary, I will be in surgery in less than 48 hours.

While I have a myriad of emotions running through my mind, I am overall in good spirits and feeling extremely optimistic about the operation.  I have the best team of doctors that someone in my position could possibly ask for and would not alter a thing.  I have the BEST family anyone could ever ask for and am surrounded by a wonderful group of friends, coworkers and acquaintances.  Nervous though?  Sure; I’d be lying if I said I wasn’t.  But I have faith.  I have been told that there are a lot of people who are praying for me and I can feel the positive energy.

But there is an additional motivating factor.  This past week, the sports world mourned the death of ESPN anchor, Stuart Scott.  Stuart passed away after a long battle with cancer but showed true strength and perseverance in the way that he fought.  On July 16, 2014, Stuart accepted the Jimmy V Award for Perseverance and gave a speech which resonated with me and millions of other warriors:  “You beat cancer by how you live, why you live, and in the manner in which you live.”  Though I do not have cancer, that statement is spot on.

A brain tumor, or any other disease for that matter, is no different.  From day one of this battle, I have not allowed my tumor to get the best of me.  Rather, I have stayed determined to battle back, punch for punch.  After all, I know that so long as I remain optimistic and stare down this adversity which life continues to throw at me, I will persevere.  The past six years have presented the darkest, most trying and most difficult of days but I will absolutely tell you that my tumor has taught me invaluable lessons about life and the way we should live.  Every day is a miracle and nothing should be taken for granted.

And with that, I’ll enjoy the next day with my head held high, confident that this is the close of this arduous journey in my young life.

Keep those prayers and good vibes coming.

So tumor, as I prepare to bid you good riddance, I do so by borrowing a phrase that Stuart made so popular on SportsCenter:  “Booyah!”

Better Things

As fast as the Christmas season came and the day itself went by, the season is now over and everyone is looking to the next big day – we’re all coming to grips.  New York City is preparing for its New Year’s Eve celebrations, students and teachers are enjoying their breaks and stores are disassembling their Christmas displays and putting up Valentine’s Day displays.  Me?  With each passing day, I’m preparing myself for surgery on January 8th and it begins with my pre-admission appointment on Friday.

Since finding out two weeks ago, I’ve remained in good spirits but find my thoughts drifting off from time to time.  No matter how hard I try not to think about it and remain focused on whatever task I’m doing, I constantly get reminded that this is really happening again;  whether it’s going to work and trying to get through the day without getting lost in my thoughts and completing short-term disability paperwork or trying to enjoy Christmas day, a day that typically brings so much joy and serenity.  At least I received plenty of gifts to occupy my time while I’m home recovering.  Yes, looking forward.

2015 brings new hope and promise and I am excited to see where life takes me next.  With a new position at work…to vacations with Ashley…to a clean bill of health.  But there is something else that I am very excited about – I was recently elected to serve on the Board of Directors of the CT Brain Tumor Alliance.

When I reached out to the CTBTA earlier this year, I did so because I wanted to help.  Over the past couple of years, I’ve felt that my true purpose in this life is to provide support, hope and help to those affected by a brain tumor.  I served on the first annual “Path of Hope: A 5K Journey for the Connecticut Brain Tumor Alliance” executive committee and assisted in the planning and successful execution of the day.  I’ve also brainstormed with the Executive Director and board members regarding implementing a patient-caregiver connection so that nobody has to go through this alone.   However, at no point in time did I expect this honor.  When I accepted, I notified the Board that I was honored and humbled and cannot wait to get started – and that’s exactly how I feel.  Unfortunately, I need to wait.   The first meeting is one week after my surgery and I will likely be unable to attend.  But then come February, I’ll be ready to go and eagerly awaiting my opportunity to share some ideas that I have with the Board and hope for their approval.

So until then, I’ll wait and keep positive.  I fully believe that the procedure will go well and the tumor will at long last be 100% gone. So I’m going to ring in 2015 as the beginning of the rest of my life.  I’ll get rid of the monster in my head for once and for all, I’ll return to the office in my new position and I’ll also be an integral part of the CTBTA.  Great things are on the horizon.

As The Kinks sang and which is my motto at the moment “forget what happened yesterday, I know that better things are on the way.”

Ain’t Nothing Gonna Hold Me Down

I waited in anticipation.  I warded off all of those negative thoughts running through my mind thinking it would result in something positive.  Finally, after a long day of sitting and waiting, the door opened and in he walked:

“You’re going to need an operation, Chris.”

I stood there speechless and in shock – how is this happening again?  Did he really just say that?  Haven’t I already been through enough?  Why me?

My MRI showed further growth of the spot we have been watching since day one in 2008 and which was radiated last year.  The tumor is the size of a grape and is sitting in the “front lateral horn” of the brain.  Thankfully, this is a benign tumor but is acting “atypically”.  The typical neurocytoma, once removed and blasted with high dosages of radiation dies off and never grows back.  In all of his years, my surgeon has never seen a leftover piece of neurocytoma like mine grow in size after radiation.  For whatever reason, likely because this is the story of my life, my tumor did not respond to the gamma knife surgery and is persistent.

In the blink of an eye, I went from being in good spirits and thinking of which restaurant Ashley and I would celebrate at, to looking at my calendar to determine when the surgery would be scheduled for.  An exact date has not yet been decided upon but it will be sometime in early January.  I’ll have to go down to Yale for my pre-op appointment and go through the rigors of surgery all over again.  As I sat there listening and absorbing it all, I thought about myself but also the effect this has on Ashley and my family.  I am not worried about what will happen in the operating room as I have the utmost and complete faith in my neurosurgeon and doctors.  I am not however looking forward to the process of being operated on again and the days/weeks needed to recover.  And for my family, I’m sure this is not easy.   But together, we will all get through this and have a happy remainder of 2015.

As I gather more information, I’ll update you.  But if you’re on the other side of this post, do me a favor and enjoy every moment of every day because we don’t know when our fortunes may change.  Enjoy this holiday season with family and friends and give thanks and blessings for the everyday gifts we have.

Like my family said to me, for a reason that we are all still searching for, I was given this cross to bear and someday/somehow, I will understand why.  And you know what, I’m okay with it.  I’m not going to stop living or let today’s news bring me down.  530e9c97ed7a3e96831b5a77bd3ca664

UPDATE:

My surgery has been scheduled for January 8th.  For the past few days and in the midst of enjoying the holiday season, I’ve been reviewing my employer’s short-term disability insurance policy to make sure everything can still be provided for.   Then, to top it all off, our company has changed health insurance once again and for the fourth time in four years.  Fortunately, my surgeon participates in the plan.   As if worrying about my health and the procedure isn’t enough, all of the other stresses that inevitably come along with it hit you like a bullet train…a topic for another day.  At least it’s almost Christmas and hopefully I’ll forget about all of this for a day.

If I Had A $1,000,000

Let me just get this out there – having a brain tumor is life-changing. No, I don’t mean in terms of how I look at life now.  Rather, I am talking about the unintended consequences that we don’t think about when we are faced with this type of situation unless we are in it.

From what I’ve been told, recovery after brain surgery can vary from: having a quick and seamless recovery, to being in the fight of your life like I faced or you may never recover and remain in a diminished capacity.  And if that’s not enough to think about, the cost and toll of living as a brain tumor survivor can wear you down pretty easily.  Let’s talk about cost…

As kids, we are told that if we do well in school and pursue our dreams, we’ll make lots of money and live a happy life.  But what our teachers did not tell us as innocent students in elementary school is that sometimes, life throws us twists that come out of left field and blind side us – and leave us scrambling for solutions on how to solve them.  Growing up, I at least assumed that nothing could stop me if I did well in school and graduated college, let alone graduating law school.  After all, we work to make money to pay for all of life’s wants and needs.  Until you are admitted to the hospital, that is, and your money can no longer be spent on your wants.

When I returned home from a wonderful vacation in Nantucket two weeks ago, my wallet was thin.  Yet, it was well spent.  However, within the first few hours that I was home, the mailman delivered another bill for my MRI this past March that I currently pay on a payment plan and CVS called because my Keppra is ready to be picked up.  This leads me to my rant – the absurd costs of health care and health insurance.

For an MRI, my insurance company bills the hospital $4,900.  Yes, you read that correctly – approximately $5,000. I for one am extremely grateful that MRI machines exist.  But for the forty-five minutes, sometimes an hour, that I am in there, I find it hard to believe that that machine actually requires $4,900 to run, notwithstanding the plethora of MRI machines on site.  And I understand that the machine produces images but they are all viewable on a computer.

The next item on the bill: the cost billed by the technicians to read that MRI – $450.00.

Then there’s an associated cost for my doctor’s visit.  A measly $245.00.  For me, and I’d imagine others in my position, the doctor’s visit is the most important part of the entire process.  I get to hear progress from my own doctor’s mouth and view the images so that I can see the news for myself.

As for surgery, well I hope you’re sitting down because I don’t want to be the cause of any unintended fainting spells.  You’ll recall that I had gamma knife surgery last December.  The total amount billed from that one-day procedure alone was $92,000.  That’s for one day.  For my extended stay in July 2008 when I had the tumor removed and the surgery for the subdural hematoma, the hospital billed the insurance company $297,000.00.

Okay, so once the tumor was removed and my head was mended back together, I needed to rehab and did so at Gaylord Hospital.  For each day that I was there, our insurance was billed $2,600.00.  This was for my therapists, pens and paper, flash cards, alphabet charts, balancing beams and workout equipment.

The scary bottom line is this: If I didn’t have health insurance at the time, I would not be here because the procedure would not have been performed.  I am grateful for health insurance, however it continues to remain a problem for so many Americans today.

Fortunately, I am offered health insurance through my employer but for someone like me, even the insurance plan is costly.  For my co-pay to kick in this past year, I had to put up the first $4,000 of medical expenses.   When I called to make my payment on my account last week, I was informed that my “other” balance was going to be sent to collections soon if I did not pay the entire sum or apply to pay the balance on a payment plan.  After all said and done, this “other” balance was my procedure in 2012.  At the time my procedure was performed, I had not yet hit my deductible, so my portion of coverage was in excess of $2,000.  Add that to my 2013 balance and my total responsibility is $2,530.67.  Well, I guess my payment plan was just extended.

Some people go to work to provide for a family, pay their mortgage and have nice things.  What you cannot plan for is your health – you can only hope that you stay healthy each year.  If you don’t, not only will your personal world spin around, but your financial health will too.  Who is not going to try their best to afford to pay for their life?  And while I know hospitals are running businesses too, quite frankly, the extent of the costs seem somewhat criminal.

Changes In Latitudes

At the time that my shunt was inserted, the doctors cautioned me that I should prepare myself for the day that it would need to be replaced.  Little did I know that that day would come just four years later.  While nothing in life is certain, nor should anything be taken for granted, the actual expectation was that the shunt would only need to be replaced every 10 years or so.

I’ll admit, I do not profess to understand all of the complexities and technicalities of the brain, though I wish I did.  Ever since my diagnosis, I have become fascinated with the brain, how it works and controls every part of the body.  I soak in everything I can possibly learn about it.  My doctors informed me of the signs and warnings that I should be on the lookout for that would signal a need to replace my shunt: redness or swelling along the path of the shunt, headaches, confusion, memory problems or any other symptom I experienced prior to having the shunt inserted would indicate there could be an infection or malfunction.

Knowing everything I had learned about my shunt made the results from my six-month follow up MRI in September of 2012 surprising.  I was feeling great and functioning normally – none of the signs my doctors warned me about were ever present.  Low and behold though, diagnostic imaging showed a buildup of cerebro-spinal fluid in the ventricles and a malfunction with the shunt.  But why wasn’t I manifesting the symptoms I had previously, such as trouble with my speech, confusion and aphasia?  Had I been so entangled with the bar exam that I lost sight of how I was feeling and lost my ability to assess myself?  Despite my optimism that all was well, my surgeon decided that it was already time for a shunt revision.

Emotionally, this was a major blow to my recovery process.  I had come such a long way in the span of 4 years and now I had to face the prospect of starting all over.  I feared that the shunt might not be as effective as the first one or that complications which I did not experience the first time around might arise.  I had finally found my groove and was comfortable with my new robotic mind – and now this.  Why couldn’t something, just anything, go right for me for a change?  But hey, nothing good comes out of complaining.  Glad I can find a sense of humor in these things now530e9c97ed7a3e96831b5a77bd3ca664.

On October 1, 2012, I headed back to Yale.  As I was wheeled into the OR and instructed to lie down on the cold metal slab for the surgery, I was again faced with the question of “what if?”  But in my head, I knew everything would be okay and I’d be as good as new in no time.  Before Ashley and my parents had the chance to enjoy the spread of food that the hospital serves them while I’m having my head drilled open, the surgery was done and I was back in my room sleeping off the anesthesia.  Sorry to them all that they were unable to finish their chocolate chip muffins…

This hospital stay was different from my previous stay, however.  Rather than being a complete invalid, I was conscious and alert of my surroundings and life around me.  Then again though, how could I not be?  I was woken up every hour by the nurse and resident neurosurgeon to take my temperature, make sure that I was sleeping, asking me questions such as “do you know what day it is” or “can you tell me where you are?”  My favorite one of that night though was “Chris, have you been walking around?”  I thought to myself, “seriously, at 4:30 in the morning?”  My response: “no doctor, I’m just trying to sleep.”  I had returned to my quick and sarcastic self in no time.

I wrote a text message to my parents at 4:30 that morning to share with them the latest updates.  I felt like my life had become a daytime soap opera.  img_ynhh_tab1Rather than General Hospital, I’d call it “Yale-New Haven – Against All Odds”.

How did my life come to this, I wondered.  But it did and I have learned to accept it because after all, life is full of adversity and I had learned to readjust the sails to go with the direction of the wind.

Brainstorm – Part Two

Will I wake up normal?  Is there a chance that this surgery could lead to unintended consequences?  What if they can’t get the shunt in place and find that there is no plausible way for me to have the device inserted – does that mean this is my life forever?  Wait, what about my song?

Within a matter of minutes of being taken into the OR, Dr. Piepmeier greeted me on the cold slab of metal and said the team of doctors was ready to get started and that he’d see me in a little while.

Now, before I go any further, I have a request.  Think of a moment in your life where your hopes for something completely outweighed the realistic expectations of it happening.  Once you have that moment, you can continue reading.  See if yours measures up to mine…

Great, here we go again. 10…9…8… Sweet dreams…and knocked out I was yet again.

Once I was out of surgery, I was wheeled down the hall back to the ICU to sleep off the anesthesia.  Now, you have to understand that nobody in my family ever conveyed the odds and percentages of the surgery to me so I did not know what to expect coming out of this.  Regardless of the odds, I knew it could certainly help me. In the midst of being woken up by the doctors and nurses, I recall feeling “different” somehow; I was able to recognize that the thoughts in my head were clearer and I was better able to understand the conversations that were taking place around me.  However, it was still too early in the recovery process for me to test myself but I had a fleeting thought that perhaps my progress would now move along much quicker.  But then again, I was still in such a fog that I was not able to fully appreciate what had actually taken place and knew I was being delusional.  I was in and out from the anesthesia so I took the time to sleep, heal and recover.  Still though – there was this nagging feeling that maybe I was back to my old self.

When I had finally fully woken up and come to my senses, I again felt like I was in a dream.  Things around me suddenly made sense and I was able to put 2 and 2 together to understand that I was now a bionic man with a valve system in his brain to help me function in society.

Come to find out, my dream was no dream – it was reality.  I felt just as I had prior to the time when all of this began.  I was alert.  I was watching TV and playing on my phone.  Yes, you read that right – I was using my phone to read the mass of emails and text messages that had piled up from family and friends the past two months.  And then the moment that I had been waiting for had come – my family had arrived.

I heard my parents’ voices as they were talking with the doctors and nurses outside of my room before coming in to see me…I eagerly awaited their arrival.  My dad entered the room first (here comes my moment):

I greeted him with an enthusiastic “good morning, Dad!”  Then my mom came in and I said “good morning, Mom! How are ya?!”

The looks on their faces were priceless…faces that I’ll never forget.  I found that the moment was beyond satisfying.  What an absolute whirlwind.  Not less than 12 hours ago, I couldn’t say my own name, let alone say “hi” to my parents.  They continued to engage me in conversation and I was actually doing it!  Though my response time was slow, I understood all the questions being asked and was able to respond.  The sound of my own voice had never sounded so good.  I had shown my family and myself what I knew in my head – I was still in there and simply needed some manipulation to break free.

And when the entourage of doctors rolled in, they bombarded me with the usual questions.  This time I was able to tell them my level of pain in a comprehensible tone, replied that “yes, I do have a headache” and “three” in response to “how many fingers am I holding up?”  Once they left, in came Dr. Piepmeier and Betsey.  He looked at me in awe, but nonetheless asked me how I was feeling.  I replied “great!” I remember him just looking at me, almost as if he thought he was dreaming but nope – this was no dream.  When my sister and brother came to see me, I greeted them all as well.  Overnight, I had gone from a shell of my old self to almost as good as new.

Walking around the hospital hallways with my mother that day, we walked past a diagram of the brain and I stopped there with her to show her what had been done to me during the surgery.  As I was explaining where the valve was inserted and where it was draining to, a voice behind chimed in and said “very impressive Chris.”  It was Dr. Piepmeier.  That moment is also one I’ll never forget.

Two days later, my paperwork was being prepared and I was released – free to go home.  When I got home, one of the first things I wanted to do was sit down at my piano and play.  I was hesitant at first, but it was something that I had to do.

I sat there, placed my fingers on the keyboard and I started to play.  Without even thinking about it, that beautiful sound was coming out.  Like it was yesterday, I began playing my composition and it was if I never stopped playing.  I played the first few bars of the song and into it I went – remarkably, I had played everything I had written previously, but this time it sounded really good.  Over the next few days, my determination to finish my song was completed and all I needed was a title.  And then it hit me.  With all that had just taken place in my brain and the further brainstorming I was doing to find a title, I titled the piece, very simply “Brainstorm”.

Foreigner’s “Double Vision”…Barbara Streisand’s “Send in the Clowns”…Ice Cube’s “A Man’s Best Friend”…Manfred Mann’s “Blinded by the Light”…Louis Armstrong’s (or my preferred version sung by Stacey Kent and the song my mom and I danced to at my wedding) “What A Wonderful World”….Ben Folds’ “I Am The Luckiest”…Patrick Watson’s ”The Great Escape”…Billy Joel’s “Keeping the Faith” and “Movin’ Out (Anthony’s Song)”…Michael Jackson’s “ABC”…John Michael Montgomery’s “Sold” (Hey Pretty Lady Won’t You Give Me A Sign)…”Take Me Out To The Ballgame”…”Somewhere Over The Rainbow”…Pearl Jam’s “Come Back”…Jack Johnson’s “Sitting, Wishing, Waiting”…Josh Groban’s “You Raise Me Up”…Avicii’s “Hey Brother”

“Brainstorm”

All of my posts’ titles have been these songs or lyrics borrowed from them.  They express the chapters of my life and relay the emotions of my story.  For me, music is everything – it is one of my passions.  And miraculously, I had it back.

Without more, here it is.  Brainstorm © 2011

chris cd cover v3_1

 

Brainstorm – Part One

By now, I hope you have noticed one common theme in all of my entries – if you haven’t yet, you’ll have to wait until part two of this post for the revelation…

At the age of 8, I began playing the piano and taking lessons. I grew up with the piano that my mother took piano lessons on and which I learned to play. Those of you who know me, you can attest to the fact that when I put my mind to something, I am determined to do it and do it well; it was the same way with my piano lessons.

After returning home from Rhode Island in May of 2008, I began writing an original composition. When I played the song, my parents asked me what it was and I replied that it was a song I was writing but that needed an ending. My family proposed some names and ideas, but none of them were what I was looking for – I needed to brainstorm.

As Stephen touched upon in his toast at my wedding, one day in late August, the doorbell rang and it was our good family friend, Caryl. Sadly I say that I do not recall much else about Caryl’s visit other than me playing the piano for her. But looking back at it, I am beyond grateful she asked. Up to that point, I had not played too much as I grew far too frustrated with myself and my inability to play. But she did not care – she knew I had it in me and just believed in me. With Caryl and Stephen watching and waiting for me to do something, I sat down at the piano and took a deep breath and began to play. I managed to play as much of the song as I had written. I’m sure it was chock full of wrong notes and whatnot, but I had done it. A major accomplishment? No. But an accomplishment for me? Absolutely.

The date was sometime in late August 2008 and things were still going downhill for me. I was making absolutely no progress in my recovery. My ventricles were still clogged from debris where the tumor sat and the hydrocephalus was acting as a crux in my quest to recover.  After all, that’s what hydrocephalus is – a condition in which cerebrospinal fluid (CSF) builds up in the ventricles. Thus, the time had come to decide whether we would pursue the implantation of a shunt.

If you’re wondering what a VP shunt is, fret no more. The easiest way that I can describe it is as a device that allows excess CSF built-up inside the skull to drain into the abdomen.  One incision is made in the back of the skull to insert the reservoir and valve deep within the brain and then one incision is made in the abdomen to place the drain where the CSF would release. Tubing was implanted under my skin to connect the valve to the drain. So, to connect the dots…when the pressure of CSF builds inside the brain, the valve opens, the excess fluid flows down the drain through my head, into my neck and eventually drains down into my abdomen. Brain juice!UntitledDecision Time

Up to this point, my biggest decisions were what I would eat and which couch I would lay on for the day.  When it came time to ultimately decide whether to pursue the shunt operation, I made my voice heard. I was yearning to break free. I knew this was my only hope and the best option.  However, my parents had some remaining questions….

On the Saturday before Labor Day, I had a call with Dr. Piepmeier.  Karen and I were debating back and forth the pros and cons of the potential shunt surgery, which had been whispered about since the initial surgery.  The concern was that when Chris was initially admitted to Yale almost 8 weeks ago, he was already suffering from hydrocephalus.  This was the most puzzling part of the situation to the medical staff…how was he even functioning?  After 6 weeks of rehabilitation, almost no progress was made and the latest MRI showed that the ventricles were blocked and swollen, and the hydrocephalus was still present.  Dr. Piepmeier and I then discussed the options, which were: (1) stay on course to see if the healing process would correct the situation or (2) to have the shunt inserted.

We then talked about odds and percentages.  After insertion of the shunt, approximately 80% of the patients will see improvement in their cognitive function within 6 months to up to 2 years…15-20% regain total cognitive function within 6 months…and a very small percentage, 1-2%, has an immediate cure overnight.

We also discussed the potential risks.  We were advised that there was potential for the development of a blood clot in the brain, swelling in the brain, infections and seizures. In addition, we were also told that there is a risk that the shunt could malfunction at some point and also that the shunt system would need to be replaced once, twice or even three times throughout Chris’ life.  But just what if, in a miracle circumstance, Chris was the 1-2% case and the procedure worked without any unintended consequences and aided his recovery process?

I then asked him what I still believe was the right question: “if Chris was his son, would he do the surgery?”  His answer was an immediate yes.  My vote was now to do the surgery.

With all that I had been through up to this point, I felt that I had nothing to lose. I considered this to be the easiest decision I had been asked to make up to this point. I understood all of the risks and was realistic that even if the procedure went without any issues, it would still be a long road ahead. I knew that it was likely that no results would be seen for quite some time, but I knew my body better than anyone. The flash cards, ABC chart, workbooks full of addition and subtraction problems, the paper we all used in 2nd grade to practice writing in between the lines, etc. were simply not working. But more importantly, I was getting tired of being trapped inside my own body.

It’s Go Time!

On September 8, 2008, I underwent surgery for the implantation of the VP shunt. The surgery was scheduled to take place early in the day which meant prep for the surgery began very early and which also meant I had to begin fasting the night before. As luck would have it, the procedure continually got bumped as other cases had taken priority over mine…I was getting restless…anxious…and extremely hungry. Finally, around 4:30 in the afternoon, I was wheeled into the OR…

 

Blinded By The Light

Freezing and bright.  That is what I remember the operating room being like right before being put out for my surgery to remove my tumor.  Sort of reminiscent of an alien abduction – or what I imagine it would be like.  I’m not sure which I would prefer – the abduction or the surgery, but I do remember trying not to look around too much in fear that I would see the tools and instrumentation that would be used to rip into my skull and remove the tumor.  I was greeted by smiling faces from the doctors and neurosurgeons, giving me reassurances that all was going to be okay.  Within minutes of being there, the anesthesiologist was ready to get started and I was instructed to begin counting backwards…

“10, 9, 8” is all I can remember.  I was confident going into the operation, but I would be lying if I said I was not scared that I would not wake up, so when I opened my eyes and saw my family by the bed, it was exhilarating. Everyone can relate to that moment where they wake up from a deep sleep and you have someone talking to you, but waking up from anesthesia after nine hours of brain surgery was overwhelming.  Despite my joy that I actually woke up, it did not take me long to understand what a hurdle this was going to be.

Within a matter of a month, I had gone from taking law school final exams to trying to string together a coherent sentence in response to the hospital’s favorite question: “are you in any pain?” I felt like responding, “No, no pain at all.  I just had my head cracked open and rummaged in.  I have tubes and a catheter protruding from my head, but no, no pain.”  Normally, I would whip out this sarcastic response in a heartbeat, but even attempting to actually verbalize this response was impossible.  I remained confident and did my best to mutter something, anything.   My naming (ability to identify people and objects) was intact and my strength was average.  However, my speech was minimal and it was clear that I was suffering from hydrocephalus, also known as “water on the brain”, a condition in which the cerebrospinal fluid builds up within the ventricles.

It’s crazy – to me, everything that I said to my family and the doctors at that time made perfect sense to me, but I was later told that what I was saying was not making any sense whatsoever.  I can relate a lot to someone who suffers from locked-in-syndrome.  But I’ll save that for another day.

On the morning of July 6, 2008, four days after the tumor was removed, my father came to the hospital early in the morning to check in on me, just as he had done the previous three days.  One day earlier, the drain that was put in to drain the CSF fluid and the catheter were removed and I was progressing better than expected. The doctors were so pleased with my progress and everything was on schedule for me to go home within a day or two.  And to top things off, my uncle came to visit and brought breakfast – yes, Italian pastries.  I watched as my father and uncle devoured them.  I could only watch.

As I sat in bed reading words that I recognized in the sports section of the newspaper, things suddenly began to deteriorate.  I started having trouble conversing and began having severe headaches, nausea and vomiting, and my heart was racing as if it was going to beat out of my chest.  The room was spinning and I was sweating bullets.  I suddenly could not move the right side of my body.  Thoughts were racing through my mind at such an alarming pace that I cannot even begin to spell them out, but I knew something was drastically wrong.  I heard my father shouting for the nurses and the sound of the brain activity machine was beeping manically.  Within a span of a few minutes, I had lost all of my motors skills and was manifesting the symptoms of a stroke.

At this point, my mom had arrived at the hospital along with my sister and brother.  I saw everyone crying and yelling as I lay in the bed with my body seizing and unable to communicate or express myself in any meaningful way to let them know I would be okay.  I had only wished I had a way to tell them not to worry, even if I did not believe that myself.

As I was wheeled out of my hospital room, my brother and sister said their goodbyes to me because they were afraid they would never see me again.  Both my mom and dad were running down the hall next to my bed as I was wheeled into the OR.  Just as we parted ways, my mom gave me a kiss and told me she loved me and my father took my hand, squeezed it and asked me to squeeze his hand if I understood.  Pathetically, I squeezed his hand and it was at that moment that we all knew I was going to make it out of this procedure and live to tell this story.