Tag Archives: brain surgery

Father and Son

As Father’s Day approaches, I decided to change things up a bit and celebrate my dad in the best way I know how – and that is to dedicate this post to him.  You may recall A Man’s Best Friend.  That post, written by my dad, reflects on my first surgery and the turmoil my family faced during that time.  Now, I return the favor and share some happier memories.

For those of you who have the privilege of knowing him, you likely think that his favorite thing is food.  I’m not going to lie, he enjoys it.  After all, he has taken the snack food industry by storm and has done some remarkable things with various companies.  However, I can tell you, as his son and growing up under his roof, that his favorite things are his wife, kids and grandson, trusty dog Chip, son-in-law, daughter-in-law and extended family.  A true family man.

There are countless memories that I can share with you, but there is one memory which I will always treasure and I know that he agrees.

The year was 1999 and the UConn men’s basketball team had just advanced to its first ever Final Four.  I was just a freshman in high school, but already had my sights set on UConn as my college of choice.  My dad is an avid fan as well and enjoys watching the games, so when UConn secured its ticket to the final four, the decision was easy – off to Tampa Bay we would go.

Going into the weekend, I remember being so confident and optimistic of the team’s chances.  I knew in my heart that they would return to Connecticut as champions.  My dad was hopeful, but not as confident.

In the national semifinals that Saturday, UConn defeated Ohio State and Duke beat Michigan State.  The final game of the season was set – UConn would play Duke for the National Championship.

On Sunday, excitement, anticipation and worry sank in.  There was a buzz around Tampa Bay, basically crowning Duke as the champions.  UConn entered the game as 9.5 point underdogs – that was quite the spread for a championship game.  After all, this was UConn’s first ever final four appearance and Duke played the 1999 season like a seasoned professional.  Regardless of the odds though, I was probably the only person who actually believed they would win.  As my dad was saying “I hope they win and think they have a shot, but they need to play their best game of the season and I think they are capable, so we’ll see.”

My dad and I spent that day talking about basketball and acting as if we were analysts.  The atmosphere was electric – on the beach, there were artists drawing the two school’s logos in the sand; television and media coverage everywhere you looked; pep bands playing the school’s fight songs; and just an overall great feeling.  As the time continued to pass and the sun set, Monday was shaping up to be a pretty special day.

When the game began, there was an overwhelming sense in the crowd, other than by UConn fans, that this game would be a blowout win for Duke.  I had Duke fans to my immediate left and we exchanged cheers and excitement throughout the game.  At halftime, UConn trailed by 2 points and nerves were settling in.  But they kept pace and as my dad said to me “it’ll come down to the final minute and whoever has the ball last will win this game.”  Sure enough, it did.

I can remember it like yesterday: with nine seconds left, UConn was up 75-74 and Trajan Langdan of Duke was driving to the basket and was whistled for traveling.  At the other end, the inbound went to Khalid El-Amin.   He was immediately fouled and stood at the free throw line to shoot two free throws – he hit the first and the second, which left Duke about 5 seconds to get down the floor and tie the game.  In what felt like the longest five seconds of my life, I nervously watched as Duke rushed down the court and with seconds to spare, Trajan Langdan approached the three point arch and then tripped and failed to get a shot off.   With that, the final buzzer sounded and UConn had done it!  As El-Amin shouted into the camera “we shocked the world!”  IMG_1714UConn was the national champion, ending Duke’s 32-game win streak.

The Trop turned into pandamonium.  The Duke fans were stunned and the UConn fans were jubilant.  The excitement of that game never wore off and brought my dad and I closer as father and son.  We talked about it for days and months, and still do.

For my thirtieth birthday, he handed me this card, along with a wrapped box:
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In 1999, my dad received one of the championship rings that the team received for his support of the university and I had always admired it.  Inside of the wrapped box was a UConn themed jewelry box which plays the UConn fight song and the ring.  I wear it on special occasions only, and when I do, I am instantly brought back to that weekend.  Those memories will will live with me forever, also.

That weekend is the epitome of who my father is.  The rock of our family and the person that my family and I can always turn to for support.  When my mother was diagnosed with cancer, he asked God for a sign and a maple leaf fell into his hand; when I was brought back to Yale in the midst of my misery for neurospychological testing, he again asked for a sign that I would get through this and the ladybug appeared and stayed with him for hours.  He will do anything for his family and children and I know that I speak for my family when I say how lucky we are.

When I think back on those results of the neuropsych tests, I find similarities to the 1999 Final Four weekend.  Just as he was uncertain, but hopeful that UConn would win, when we learned the results of my testing and contemplated the shunt surgery, he was again cautious, yet optimistic.   In both cases, he certainly could not have expected the miracle that occurred.  Yet, he and the ladybug assured my family and I that I would show improvement.  He knew I had a fighting chance that I could regain my cognitive functions, but was not making any guarantees as to when. Talk about “shocking the world”!

Happy Father’s Day, Dad!  Thanks for everything!

Love,
Chris

We All Need Somebody To Lean On

Tomorrow is the beginning of a new chapter.  Along with other brain tumor survivors, caregivers and the CTBTA, we are having our first Patient and Caregiver Outreach meeting.  This is my moment, my opportunity to give back and aid those in need.

As I was browsing the web earlier, I read about Ethan Couch, an 11-year old who had a dream.  As some background, when he was 9 years old, Ethan’s mother began to notice irregular behaviors from her son such as trembling, having sore feet, poor balance and struggling to put on his pants and tie his shoes.  Tests showed that Ethan had a brain tumor which was blocking his body’s ability to circulate spinal fluid, causing hydrocephalus.  I know this feeling all too well and my heart sank for Ethan.  Unfortunately, his tumor was inoperable and doctors are unable to do anything other than monitor him on a regular basis.  But Ethan had a wish – to attend the Masters this week.masters-flag

This story is truly heartwarming and special and I hope you all can find the time to read it: http://espn.go.com/golf/masters15/story/_/id/12638216/masters-wish-comes-true

Streelman got it right.  Like him, I want to open the door for someone else and give them the hope and fight they need.  Now is my opportunity for giving back and using what happened to me in my quest to help others.

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.