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.

A Man’s Best Friend

As we all know, brain tumors, and any other devastating disease, affect not only the patient, but also everyone around them.  Doctors are of course the first line of defense for any illness, but I am of the firm belief that there are so many other heroes that have helped in this journey.  For that reason, I have decided to share parts of my story from the point of view of others who were involved all along the way.

This entry was written by my father.  He has been there for me throughout the entire ordeal spanning over the past five years.  As I was in a fog for much of the time I spent in the hospital, I am not in the position to write about the first surgery and the story behind it all.  Here is the story from a parent’s perspective.

I could not sleep on July 1st, the evening prior to Chris’ surgery. I wandered into Chris’ bedroom at about 4 AM and there on his bed was a perfectly wrapped bag of birthday presents for Chip. Chip is our “other” son…a handsome Cavalier King Charles Spaniel, who happened to be Chris’ best friend and coincidentally (or just strangely), July 1st was his birthday. Chris never liked dogs and did not want a dog when our other son Stephen came home in the fall of 2001 and announced that “every boy should have a pet dog”…but Chris and Chip became best friends. Chris would sit down in the evening and Chip would immediately jump on the sofa to cuddle with him…they were inseparable.  When I saw his forgotten birthday gift sitting on Chris’ bed that morning, I had an overwhelming feeling that everything was going to be all right.

My wife and I got to the hospital at 7:00 that morning and were greeted by teams of doctors, anesthesiologists, nurses, and support staff.  There sat Chris…anxious, but at peace and confident. Dr. Joseph Piepmeier was the neurosurgeon who was going to perform the surgery, and as confidently as you could possibly imagine, he described in depth how the delicate procedure was going to be performed.  Dr. Piepmeier is the Nixdorff-German Chair in Neurosurgery and Professor of Neurosurgery at Yale University, and my wife and I had the utmost respect for his plan of action.  At 8:00a.m., it was time to prep Chris for his 9:00a.m. surgery, so we said our emotional goodbyes with Chris being the most confident of all of us.  My wife and I immediately went to the chapel, where we prayed, hugged each other for support, and cried for the first time.

The surgery began on time and throughout the day we had family members join us in the waiting area as the time moved at a snail’s pace.  At 1:30p.m., Dr. Piepmeier came out of surgery to speak with us and thinking the worst, my heart almost exploded out of my chest. The tumor was much larger than the MRI indicated and was also more invasive. The tumor had actually pushed his brain to both sides of Chris’ head and Dr. Piepmeier was having difficulty in his efforts to remove it as cleanly as he had hoped, the surgery was going to take much longer then he had anticipated. At 5:35p.m., 9 hours and 35 minutes after the surgery began, we were summoned into the consultation room where Dr. Piepmeier was waiting for us. He laid out the facts for us…the tumor was almost the size of a grapefruit, it was spread out all over his brain area, it was estimated that the tumor was between 3-6 years old, the main area of tumor’s inception was in his ventricles, he believed that he got it all out but there were no guarantees on that, and most importantly the biopsy was benign.

We hugged each other, and then hugged Dr. Piepmeier and I think I saw a tear well up in his eye. We were told that Chris would be in the recovery area for about 2 hours and when we finally saw him in the ICU, we were shocked by his appearance. Tubes, electrodes, monitors were everywhere, and this very strange meter that was imbedded into his head, that protruded from all of the bandages and beeped every time his cranial pressure began to build up…but facially he looked beautiful.

My wife stayed with him in the hospital that evening and I went home with Stephen. Chip was anxiously waiting for us and when he did not see Chris he immediately jumped on his spot on the sofa, whimpered, and kept looking for his buddy. Little did we know at that moment, Chris’ descent into hell was just about to begin.

Send In The Clowns

Any one who has gone through an emergency procedure knows the whirlwind it becomes.  Upon hearing the information I had long suspected I would hear, I was immediately rushed to Yale-New Haven Hospital where Dr. Joseph Piepmeier, head of Neuro-oncology, and his staff would be waiting.   Once I arrived, life was moving at an alarmingly fast pace.  There were questionnaires to fill out, identification bracelets to put on and doctors coming in and out of the examination room.

As Yale-New Haven is a teaching hospital, there were many graduate students that came into the room at the direction of the neurosurgeons and each asked the same questions over and over and over.  My favorite one of all was “What kind of pain are you in?  Any headaches?”  Seriously?!?  I first hoped that maybe this was all a bad dream and I was merely guest starring in an episode of Grey’s Anatomy.  Once that hopeful thought fled, I felt like replying, “no, I’m here because I like the hospital food.”  Once that barrage was over, in comes Dr. Piepmeier.  He was followed into the room by his chief resident, fellow neurosurgeons and the clinical care coordinator.  There was something about Dr. Piepmeier that calmed me – he had this glow to him, almost as if the moment I saw him I’d knew he would be able to help me.

I was then briefed on the situation – I had a tumor sitting in the ventricular system that displaced the septum pellucidum.  The procedure was described to me and I was told where the incision would be made.  Now, I’m a fairly bright kid.  I graduated UConn cum laude and had one year of law school under my belt so, I had heard my fair share of crazy latin terms.  But “ventricular system”, “cortical incision” and septum pellucidum?  He looked at me and said “any questions so far?”  I shook my head no, but if I were really on top of my game, I probably should have said “yes, do you have a medical dictionary?”  Between all the doctors in and out, the questions and medical jargon, I felt like I was at the circus – not quite Barnum & Bailey’s though – more like a creepy, frightening Cirque de Soleil.

I was then informed that emergency surgery was scheduled the next morning and it was my doctor’s hope that the entire tumor could be removed.  I signed the consent…as if I had any other option…and with that, a few questions were asked and the doctor was on his way and told me he’d see me in the morning.

Stunned and scared, I did not know what to do or what to say.  Shortly after, a nun from the hospital Chapel came into my room and asked whether she could pray with my family and I.  This is the moment that “it” all became very real to me and I knew that I needed God in this time of trouble.  I cannot even describe the thoughts that were going through my head at the time because I honestly do not even remember.  I was in such shock that this was happening to me.  The only question I remember asking the nun and my parents was “why me?” and nobody had the answer.

No Disguise For That Double Vision

Here I am yet again – Yale-New Haven Hospital.  The stale, sterilized smell of hospital hallways and plastic identification bracelets has become second nature to me over the last five years.  I am about to enter an entirely new realm of brain tumor treatment – gamma knife surgery.   My doctors are confident that this could be the final step to curing my tumor.  As I await my treatment with a monstrous metal helmet drilled into my head (yes, straight out of Silence of the Lambs – just call me Dr. Lecter – fava beans, anyone?), I think about how far I have come and look ahead to the struggles I will always face.

Prior to my diagnosis in the summer of 2008, I had been experiencing double vision for two years on and off.  I made an appointment with my optometrist, who was not concerned and concluded I had an inflamed optic nerve.  Prism glasses were prescribed to me and within two weeks, I was no longer seeing twins everywhere I went.

I started law school that fall and quickly realized that it lived up to everything I had heard – reading, analyzing and then more reading.  In that first year of law school, I scored average in all of my classes, though I struggled through my turn when I was called on in classes to “brief” the case.  It was something I could not understand at the time – I had read the case, took copious notes and talked about the case with my friends.  Luckily for me, I made some great friends and met the girl I would wind up marrying, and together, we all helped each other get through the first year with great success.

Upon returning home in May of 2008, the problem I experienced the previous summer re-appeared, but this time, it was much worse.  In addition to constant headaches, I was waking up and going to bed with the double vision, whereas in 2007, it was not until halfway through the day that the double vision would ensue.  I went back to my optometrist in hopes of him investigating this further, but he dismissed the problem and said it was common to have your eyes “eat up the prism”.  The remedy?   A stronger prescription!   Thankfully for me, after reading way too many medical cases gone wrong in school, I decided to challenge this diagnosis and demanded to be seen by an expert.  A neuro-ophthalmologist agreed to consult with me.  Within days, I was seen and after a quick evaluation, he immediately noted that something was drastically wrong – a large mass was pressing up against my optic nerve.  However, to be certain, he sent me straight to Yale-New Haven Hospital to have an MRI.

On July 1, 2008, I was notified that the results of my MRI were in and that an immediate consultation was necessary.  My parents and I returned to the neuro-ophthalmologist where the devastating news was provided to us that my MRI showed a large mass the size of a grapefruit sitting at the center of my brain.  I was to be transferred immediately to Yale-New Haven Hospital where Dr. Joseph Piepmeier, head of Neuro-oncology, and his staff would be waiting for me.

No one could have prepared me for this news and the obstacle I was about to face.  At the time, the medical staff at Yale was amazed that I was able to walk, talk, or even function.  For me, I would have never imagined how quickly I would need to grow up at the age of 24.

Five years later, here I am, back where I began and I am more hopeful than ever.  All things considered, I have been lucky – and this is why I have decided to start this blog.  To share my experiences, to educate, to inspire, to hopefully reach out to even just that one person who needs it…because after all, grey matters.

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