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.

Hanging Tough, Staying Hungry

I turned over and looked over at the alarm clock – it was 4:59 a.m.  My faulty brain knew that, in one minute’s time, the alarm would sound signaling it was time to be operated on.  When I arrived at the hospital, I was ushered to the triage where I was given my identification bracelet, gown, hair cap and socks – lucky me.   photo 3As the neuro-residents came over to check in on me, I waited in anticipation for them to roll me down the long corridor and into the operating room.  I waited, answered another slew of questions about my health history and waited some more.  Finally, in walked my surgeon.  He came over to reassure my family and I of his confidences and to answer any last-minute questions, but also to “mark” me. “The tumor” he said “is in my left frontal lobe.”  He then marked my left ear with an X.  Umm, why did he just mark my ear with a Sharpie?  So in typical Chris fashion, I said “Doc, I think I need my ear, don’t I?”  Everyone got a good, much-needed laugh.

Of course though, because I am Chris Cusano, nothing in my life comes easily or without issue.  Just as I was about to head into the OR, one of the techs came out and apologized as he informed me that the operating table was broken and they were just waiting for the part to fix it.  Again, I just smiled and laughed because at this point, what more can I do?

Finally, word came that the table was fixed and it was time for this monster to come out for once and for all.  I took a minute to say “see you later” and “I love you” to Ashley, my mom and dad and saw the resolve in each of their eyes.  I know they were hurting and scared on the inside, but they showed me true strength and determination as we parted ways.

As I drifted into a deep sleep, I did so with happy thoughts in mind.  I was happily woken up to my name being called and seeing smiling faces looking at me.  At the foot of my bed, there stood my surgeon giving me a thumbs up!  “We got it Chris, you did great!”  Unfortunately, the anesthesia had made me sick and I did not hear anything else that he had to say at the time.  But I felt great otherwise, all things considered.

By the time my family came in, I was alert and oriented.  photo 2Ashley and I had joked prior to the surgery that we both wondered what the tumor looked and felt like.  I had suggested to her that she ask my surgeon if she can see it and touch it.  Not a second after I saw her, I asked “so, was it soft and squishy?”  She instantly got it, laughed and told me I was still there.  My parents and the nurse were not so quick to follow.  Adults!  I have said it all along – a sense of humor and a positive outlook goes a long way.  Despite the fact that Ashley and my parents teased that I looked like a conehead, a smurf and a q-tip, I was in good spirits and knew the prayers had worked.  As I laid in the bed, I looked ahead.  I was eager to move – eager to get out of bed, walk, test my motor skills and resume my life.  To show the world and myself that I had not missed a beat.  I knew I hadn’t.

Today, fourteen days removed from surgery, I find myself thinking about the ladybug again.  After hearing that this operation was needed, my family and I felt as though she did not leave a sign, but was just there for comfort.  Yet, in the days that have passed, I believe that she appeared again to let my family and I know that all would be alright.

There are signs all around us.  Sometimes, we don’t even need to search for them.

Went The Distance Now I’m Back On My Feet, Just A Man And His Will To Survive

As I parted ways with my parents and Ashley, who were escorted to the waiting room, and I was wheeled into the operating room, only one thought came to mind – I will persevere and see you all soon.

But, I was not without emotion.  The operating room is cold and sterile.  The bright lights are reminiscent of a movie scene and the scalpels and doctors’ tools set the scene for a gruesome horror flick.  But then, somehow, there was a feeling of peace and serenity.  As I laid down on the operating table, the nurses and technicians propped my body and moved my limbs where they wanted them.  I heard my surgeon’s voice in the background and then everyone in the room came over to the operating table to run through everyone’s duties for the operation.  And then, with that, the IVs were started and into a deep sleep I went.

However, before writing about my latest triumph, I opted to write a “thank you” dedicated to the following individuals:

First and foremost, my surgeon, Dr. Piepmeier.  I do not have enough time or space to thank you for all that you have done and continue to do for my family and I, but let me say everything is noticed.  The confidence that you carry and the assurances that you provide me have given me such great trust, belief and confidence in you.  Your calming demeanor and persona are what get me through the day when I see you.  As I have said before, ever since I was introduced to you on July 1, 2008, I was confident and knew that I would win this battle because you are my surgeon.  Thank you for everything.

To my nurses at Yale-New Haven Hospital: Tina, Max, Caroline, Maebel and Shanea.  I want to thank each of you for your help and support in nursing me back to health.  And Barb, for getting me out of bed and walking me around the hallways, I thank you.

To the CT Brain Tumor Alliance, thank you for your support, messages and keeping me in your thoughts and prayers.  Connecting with you has been one of the greatest things to happen to me in a long time and am so relieved to know that I have an army of support behind me.  KC, you have welcomed Ashley and I into your family and I am so fortunate that this connection was made.

To Aunt Linda for the never-ending love and support you have shown me.  From the text messages, to the cards and the prayers, I cannot thank you enough.  Your outlook on life and situations is inspiring and I cannot help but to think where I would be without you.  Thank you for believing in me.

And to my extended family and friends who took the time to send me a message of encouragement, support, to let me know your thoughts are with me or just to say hi, thank you.  The love that I feel from you all is incredible and I am grateful beyond words.

To Jackie, Stephen, Wayne and Greyson – you guys are the best.  I don’t know where I’d be without you, but know that I’m still here because of you.  You all keep the fight in me and give me the resolve to carry on and plow forward.  Thank you for all that you do and know that I am forever grateful.

Mom and Dad – I am so happy that you are my parents!  From being with me every step of the way to nursing me back to health and checking on me all day, I appreciate it more than you may ever know.  You have watched me grow into an adult and have seen my best and worst days but never wavered and never pushed me toward anything.  I love you both very much and can only hope that none of us will ever have to go through such a tumultuous situation again.

Finally, to Ashley, my loving, caring wife.  You are amazing and I owe you so much more than I can ever repay you for what you’ve given me the past six years.  When you heard that an operation was necessary, I shared your disappointment and nervous reaction, but you never outwardly showed that to me.  Instead, you stood beside me with your head held high and were prepared to take down this monster with me and for that, I am so grateful.  I love spending every day with you and am hopeful that now, with this behind me, we will have many many more days to celebrate life and enjoy each other every single day.

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.

Hey Pretty Lady Won’t You Give Me a Sign [Reprise]

As I sat at my desk today, fleeting thoughts ran through my mind about what tomorrow will bring.  But then, I refocused myself and got back to the task at hand.  However, something interesting happened along the way.  Better yet, I’ll go out on a limb and say my family and I got a sign.

Do you remember this post?  Well, as luck would have it, it happened  again.

As I sat at my desk, my phone began to buzz.  “Another group message about Christmas cookies from Jackie?” I thought.  No, the constant buzzing concerned something far more important.  When I picked up my phone, there were messages and this picture from my dad:

FullSizeRender

My dad shared with my family and I that when he returned to his office, this pretty lady was sitting on his wall, just waiting to be seen, to let him know that all would be well tomorrow.

If that’s not a sign, then I don’t know what is!

Follow

Get every new post delivered to your Inbox.

Join 300 other followers

%d bloggers like this: