Tag Archives: Post-op

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

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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.

I Get By With A Little Help From My Friends

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From the day that I was diagnosed to the weeks after the shunt insertion and still to this day, my family and friends played such a huge role in my recovery.  I think we too often take for granted how important having a reliable support group can be – but they are so much more than that.  Having someone to laugh with or who can take your mind off things can go a long way during a period like this.

For the first time in three months, I had consecutive weekends filled with socializing and excitement.  On Sunday, September 14, 2008, the Giants were playing the St. Louis Rams.  I was downstairs watching the pregame show when the doorbell rang.  My mom yelled down to me: “Chris…there’s someone here to see you.”  All I wanted to do was the watch the game!  Well when I went upstairs, at the door was my friend with a tray of food.  I looked at him and then looked back at my parents – did I miss something?  One by one, all my friends came over to the house to watch the game with me. Surprise! I was in shock but elated nonetheless.  I just couldn’t believe that everyone had come by just to spend the afternoon with me and hang out like we had grown so accustomed to doing.  I had not been in a social setting with so many people in a long time and was uneasy at first.

My scars were still not healed, so I put on my baseball cap backwards to cover them up and I was ready for a great afternoon.  The last time I had seen everyone all in one place was the afternoon prior to the emergency surgery to remove the hematoma that almost took my life.  On that day, I was a shell of the person I was on game day.  My friends looked at me in amazement – it was awesome.  We joked, laughed, ate everything in sight and as if that day weren’t bittersweet enough, watched the Giants were victorious.  And speaking of joking, out of nowhere, I heard a couple of friends doing impressions of Arnold Schwarzenegger, but what do you think the quote was?  None other than “It’s not a tuuuuumor!” from Kindergarten Cop.   Some things just never change….

I was so excited that they came by to break the ice and hang out with me, but what I remember most of all is that they did not let it bother them that I was still not 100% and looked somewhat like Frankenstein.  They all could’ve gone to the sports bar to watch the game but instead they came over to watch the game with me.  Those are true friends and a sure way to make anyone feel good about themselves, no matter the situation.

The game ended too soon but I was already busy looking for plans for the following weekend.  I talked to Ashley almost every free chance I had the following week and practically invited myself up to Rhode Island for the upcoming weekend.  I had been cleared to drive but Ashley, being the nervous Nellie that she is, pleaded that she come down to Connecticut to pick me up.  Believe it or not – I turned down her offer and drove.  This was such a liberating feeling and something I had to do in order to regain my confidence with everyday tasks.  To this day though, she still shakes her head when I remind her about that decision.

Driving across the Newport Bridge and headed north towards Bristol, I had flashbacks to the last time I was in Newport – the afternoon walking the town with my mom searching for apartments to rent for the upcoming year.  As I was having these thoughts, I quickly realized how fortunate I was after living through such a harrowing life experience.  I then crossed over the Mt. Hope Bridge and felt like I was back where I belonged.  Coming over the bridge, I could see the red, white and blue painted lines on the street.  Over to my left, there was the law school.  I took a good long look at it. I told it that I’d be back, but not yet.  First things first – visit Ashley and the rest of my law school friends.

The last time that I had been with everyone all in the same place in this setting was the day of our last final.  If you’re unfamiliar with law school, you enter as a 1L and spend the duration of your 1L year with the same group of people.  I found this to be beneficial because many of our classmates became very close friends with each other.  We got each other through the many ups and downs.  And on the day of our very last final, after all appellate briefs had been written and argued and final exams completed, it was time for a proper send off at one of the local pubs.  So when I saw everyone together for the first time since that day, it was bittersweet.

I was still wearing my hat backwards to cover the scars and somewhat nervous to be around such brilliant people.  I had just spent my summer reading Dr. Seuss books and memorizing farm animals on flash cards while everyone else spent their summer in law offices.  “What was this going to be like?” I wondered.  But then I realized – I’m a warrior and though I was nowhere near as smart as those I associated with, I was now mentally tougher.  There was a “Section C” party at one our classmate’s house and there I was – laughing, talking and having a good time just as I had done months earlier.

Friends are always there to pick you up when you’re down and help you through the tough times.  For me, I was quickly shown two weekends in a row how important friends and support groups are and can be.  And that’s one of the reasons I’ve decided to now give back.

I recently reached out to the Connecticut Brain Tumor Alliance to discuss ways in which I can pay forward the gift that I have been given.  While I can never provide a medical miracle, I am able to be there to listen to those who are undergoing what I went through and show them that through their adversity, things can and will get better. But for those friends, I would be a shell of the person I am today.

To them all – thank you.  You each played a profound role in my recovery and showed me the power of friendship…and for that, I am forever grateful.

Blinded By The Light

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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.