Tag Archives: rehabilitation

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.

Give Thanks and Praises

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And just like that, in the blink of an eye, the holiday season is upon us.  But before you sit down tomorrow to enjoy that glorious feast, take a moment to give thanks to those around you and for the plentiful gifts bestowed upon you.  Have you ever wondered why we celebrate on one day as opposed to every day?  I  know I have.  Just some food for thought.

Yesterday, I had the pleasure of listening to Army Sergeant First Class Joe Kapacziewski speak at the Middlesex County Chamber Breakfast as he was honored as the Role Model of the Year by the Chamber.  His story is eye-opening and truly inspirational.   As he shared in his remarks, Joe was injured by an enemy grenade when he and his men were ambushed in Iraq on October 3, 2005.  The ambush resulted in severe injuries to Joe’s leg, hip, artery and nerves.  He spent seven months at a rehabilitation facility relearning daily tasks that we all take for granted.  As he stated during his remarks and in during his Q and A, family, friends and his support group often got him through these difficult times.  However,  after more than 40 surgeries and countless hours of rehab, Joe made the difficult decision to have his leg amputated and then went for intense physical therapy to relearn how to walk.   Through hard work and determination, Joe was the first Ranger to return to the line with a prosthetic and was deployed to Afghanistan six times.  Furthermore, Joe was deployed eleven times in support of the Global War on Terrorism.   However, Joe shared that his return came with naysayers and those who doubted his ability and cautioned him in his quest to return.  Yet, he stared adversity in the face and is the true epitome of an American hero and someone who we can all look up to.

So this Thanksgiving, I have plenty to be thankful for.  Like Joe, I live for every day and count my blessings.

  1. My rock, my best friend – Ashley
  2. Family and friends
  3. My continued good health
  4. My job and generous co-workers
  5. The simple joys of life
  6. My dog, Coddington
  7. The setbacks endured this past year that have made me stronger and given me character
  8. The freedom of life and ability to live
  9. The ability to find hope and laughter even in bleak situations
  10. Great and lasting connections made with the wonderful people from the CTBTA

This list comprises just a small sample of all that I have to be thankful for.   I hope and believe that next year, at this time, I’ll be in a similar situation and counting my blessings and giving thanks for the wonderful gifts I recognize everyday.  However, I cannot but help to think of what my MRI next month will show.  Was the brightness just an aberration or was it tumor activity?  Time will tell.  But until that day, let’s give thanks and be grateful for the everyday gifts we receive.

So while you are enjoying that turkey and gravy, be thankful that you’re able to do so with your family and in-laws and say a prayer for me.

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Back to School. Back to School…

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…to show my dad I’m not a fool.  Ohhhhhh, back to school.

Tap tap tap tap tap tap.  Tick tick tick tick tick.  The sounds of an auditorium style room full of anxiety-filled, Type A law students taking a final exam, typing away at their laptops and checking their watches.  Before my surgery, there was nothing quite like that atmosphere to send me into my own personal hell… but obviously a lot changed after my 1st year.  No longer did a measly exam send me into panic – my brush with death had a way of knocking out those testing butterflies.  Sitting in this room now gave me a sense of pride. I was actually completing a law school final exam only months after being told I may never achieve a mental capacity greater than a second grader.  Submitting the exam when the time was up was akin to what I’m sure a marathon runner feels like after crossing the finish line.

This was one exam that I would forever remember.  A few weeks later, I eagerly checked my grades, and next to that particular class, I saw a “NS”.  What the hell did that mean, I wondered?  I asked Ashley but she had no idea either.

Let’s back up…

As you can probably surmise, I decided it was time to try heading back to law school.  There was only so much research I could conduct, hearings that I could sit in on and reports that I could write to prove to myself that I was ready.  My effort, dedication and work product continued to impress my employers – they too, knew I should head back.  I knew it was going to be tough and unlike anything I had ever experienced during any of my schooling.  But with my one semester leave-of-absence nearing its end, there was one critical obstacle in my way.  At yet another follow-up MRI and appointment with my neurosurgeon, I was informed that there was no further growth and that the shunt was working very well.  My progress had continued to amaze the Yale medical community and without more, I was granted clearance to return to school.

And just like that, I was back into the routine.  I received my registration date and time to pick my classes and off I went.  Being ambitious as always and not wanting to fall behind any more than I already had, I registered for 15 credits.  Call me crazy, insane or even stupid for doing that – but guess what? I did it. Well – sort of.

Those five classes required me more to work harder than ever before and resulted in greater angst in a five-month period than I had ever experienced.  The assigned reading was overkill at times.  As I was still in a rehabilitation state of sorts, I was unable to easily read material the first time and comprehend it.  And to further complicate matters, these were judicial opinions, many of which were chock full of legalese and acronyms galore – thank God for the law school spark notes!  I got called on multiple times and just stared blankly or made up some incomprehensible response.  It was awkward at times.  Again, I was around classmates who I held in high regard.  I wonder what they thought when I was called on?  Then again, after what I just beat, I didn’t really care what they thought.

Despite everything, my friends still stood by me.  Early on in the semester, Ashley and my friends threw me a surprise welcome back party.  photo(5)photo 2It was awesome to see all my friends in one place and to know that they cared. Like law school, this too was a test for me as I was forced to be in a social setting, and like school, I managed.  I was completely surprised and happy to know that everyone came out and showed their support.

The rest of the semester was such a blur.  About halfway through, I was mentally done.  But I dug deep and found the extra energy needed to get through the rest of the semester.  Finally, the last day of classes had arrived and then reading week to prepare for exams. For me, that was crisis mode.  How was I to retain all of this information under the rigorous time constraints?  Even despite what I had just been through, my exams were still administered in a rigorous three-hour window. It was an experiment for me, but it was the only way for me to assess myself.

There were certain classes that I did really well in, far exceeding my expectations.  And there were others, well, let’s get back to that “NS”.

Shortly after seeing my bewildering grade, the emails rolled in and the phone rang. It was the law school calling to tell me that my exam was so poor, incomprehensible and confused that I had earned an F. Earned.  That’s nice.  But seriously, was it that poor?

My professor and the school were willing to work with me.  But there were those who I could hear whispering “I told you so…” Nonetheless, as ashamed and embarrassed as I was, I arrived at the school to meet with the members in Administration and my professor to review the exam.  A quick explanation of law school exams – you are given an extremely long story, with multiple “characters” and events (Think Murphy’s Law style – everything possible can and does go wrong in these scenarios).  You then need to write a coherent essay explaining all the legal issues involved in the story.  Where I went wrong was as clear as day to my professor and perhaps and interesting anecdote for any neurologists out there – all of the legal principles I identified were correct, but I had simply mixed up which “character” did what.

The school and my professor recognized that my exam was not a true indicator of my work throughout the semester and I was given the opportunity to retake the exam over the summer.  Otherwise, all of my hard work, the time that I spent with the professor during office hours, outlining and re-outlining my notes, taking practice exams and reviewing them my professor…not to mention losing thousands of dollars on this course would be gone.  Fortunately for me however, my professor recognized all of this and fought hard.  I recall him telling the school and I that he had previous students with traumatic brain injuries who had manifested the exact same problems on exams.  My professor suggested that I be allowed to retake the exam that was being given during the summer course. After much back and forth, I was notified that I was permitted to retake the exam that was to be administered during the summer session.

The legal concepts and theories were still fresh in my head but I still put in many hours of preparation as before because I refused to squander this opportunity.  I was so determined and prepared to nail it.  After it was all said and done, I received word from the law school that I had earned a B.  What followed was a congratulatory message from my professor commending me on my hard work and persistence.

So like you Billy Madison, I proved to my dad and my family that I’m not a fool.  I knew it all along but there were plenty of doubters.  Again though, through adversity and persistence, we can all achieve whatever we set out minds out to do.  The human brain is an amazing, resilient organ.  To think that a tumor the size of a grapefruit was in there which in turn lead me to having to differentiate between a red fish and a green turtle to taking and passing law school exams is, well, mind boggling.  After getting through that first semester back, I was more than happy to bring on more tap tap tapping and clock-watching.

Take It Easy

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Following the shunt insertion surgery, I had to find myself in the world again.  As I touched upon in a previous post, I was released from my cognitive and physical therapy programs immediately, but I was not prepared for a return to law school just yet.

I needed to work on myself.  Beginning on July 1st and continuing through September 7th, my days were spent in emergency rooms, operating rooms, the ICU, rehabilitation centers and in my house.  At all times of the day, I was trapped in my mind and head.  In a previous entry, I mentioned  that my therapists said my story was reminiscent of Jean-Dominique Bauby and The Diving Bell and the Butterfly.

For those of you unfamiliar with the story of Jean-Dominique Bauby, it is a fascinating and moving story and I recommend reading the book (or even watching the movie) if you are interested in learning more. Imagine waking up in a hospital after suffering a massive stroke only to find that you can think and reason but you cannot communicate with the outside world.  You are now paralyzed.  Yet, you can still hear sounds, smell, taste and feel emotion.  Essentially, you are a prisoner inside your own body.  Bauby was left only with the ability to move his left eye.  Blinking was now the way he communicated with the world.  Nevertheless, even though his body was immovable, his mind and spirit to think were free.

I too, was locked inside my own body until September 9th.  As miraculous as my recovery was, there was still much work to be done.

Now, I know what you are thinking – I obviously recovered because I’m writing about my story . But it wasn’t that simple.  As I mentioned above, I had gone over two months without doing anything of any importance and if I wanted to pick up where I had left off and move forward with my life, I would need to put in some serious work.  My surgeon and medical staff, while in amazement over what taken place, could not predict what my recovery process would be like, nor could they predict how I would function in everyday life.  If they could not make any assessments, you can rest assured that I too had no idea what was in store.

Could I comprehend what I read?  Write a brief?  Advocate for a position?  Sometimes my ambition and drive gets the best of me, so of course I felt the need to start testing myself immediately.

“Immediately” is the key word here.

Not less than a week after getting back from my Rhode Island adventure where I felt I was destined to soon return, I went straight back to working for a law firm.  Too FastOn September 21st, I walked into the office and headed up the stairs.  The last time that I was walking up these stairs was on June 26th – the day that I knew I was not okay.

At that point of the summer, my parents were driving me to and from work because of the double vision and in fear that something was not right.  However, their fears did not stop me from wanting to work and so they agreed to drive me with an understanding that I would call them if something were wrong.  No later than the time I had gotten up the stairs, I got on the phone and called.   As I walked up the stairs, I felt extremely dizzy, light headed and queasy.  I stopped on the landing halfway up the staircase and leaned up against the window.  After mustering up the energy, I slowly climbed the rest of the stairs, sat down and called home – and you know the story from here.

Let’s try this again, shall we?  On September 21st, I returned to the office and headed up the stairs.  This time, I made it up with no trouble whatsoever and was feeling great.  My employers were thrilled to see me back and doing well.  I was eager and willing to do whatever task needed to be done, even if it meant standing at the copier machine all day pressing “start” or typing out a word document for an attorney.  Over the course of the next three months, my progress improved greatly and I was being assigned more meaningful tasks. With each task that I had completed, I was beaming in confidence and eager to see how I would perform in the classroom.

Life was still moving nonstop for me and I was on the go 24/7 doing some task to help me resume my life as it had left off prior to my diagnosis and surgeries.  I’m thrilled I was able to get right back into my life.  I wanted it all back immediately and to erase from my memory what had happened to me.

At that point in my life, I did not want to remember any of this but rather, to carry on and move forward with my life.  I never stopped to reflect on the severity of the situation; the pain and emotion that I had felt during the previous months; the impact this all had on my family or just what a total roller-coaster ride my life had turned into since May.

Ashley often told me, and still to this day has to remind me, I never took a minute to grieve over what happened to me and express my emotions.  Six years removed from my diagnosis and years of battling to get to where I am today, I can look back and realize that at that time, the best way for me to deal with what life had thrown at me was to continue life as nothing ever happened.   But hindsight is 20/20.   My situation has matured me beyond my years, and I have now learned that there is nothing wrong with that.  Nothing in life should be taken for granted.  Life is precious and can go by in an instant.   I learned.  I grew up.  But that didn’t mean that I needed to push myself too hard too fast.

For you readers who are undergoing a similar experience, let loose and express yourself.  Don’t let it consume you, but it is okay to acknowledge that something bad has happened to you.  Do not try to be a hero and pretend that everything is okay if it’s really not.  As I said in a previous post, family and friends got me through my battle and you can rest assured that they have your back as well.  Trust me.

How to Save a Life

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In our lives, we all have someone that we can rely on to lift our spirits and make us smile.  In the summer of 2008, I realized how lucky I was to have more than someone – I had an entire army of support and caregivers.  So without more, I dedicate this post to my guardian angels.

Dr. Piepmeier, Director of Neuro-Oncology, Yale New Haven Hospital – I do not even know where to begin to thank you and tell you what you mean to me.  From the moment you stepped into the consultation room and we met for the first time, I knew you were going to get the job done.  Your professionalism and courtesy to my family and I during such a tumultuous summer is never forgotten.  I often think of what it would have been like had another surgeon handled my case; fortunately, I never need to think about that.  My family can attest to the fact that, upon receiving the diagnosis, I was scared of the unknown, but after meeting you and hearing the plan of action prior to the procedure, I was at peace and prepared for battle.   Then and now, you provide me with a reassuring sense of confidence that I could not give myself.

Betsey, Clinical Care Coordinator, Department of Neuro-Oncology – When I received my diagnosis and spoke with you for the first time, you had a calming effect on me. I instantly knew that, as bad as the diagnosis was, the team of doctors who were assigned to my case were going to get me through this and back on my feet and doing all that I planned to do in this life.  I feel so fortunate to be able to rely on you as my go-to person to have questions answered.  But more importantly, you provided me the hope that I needed to assure me that things would get better and to keep the faith.  Your smile and positive outlook has had a profound effect on me and for that, I am forever grateful.

Aunt Linda – Thank you. You have truly played such an important role in getting me back to the point where I am at now in my life. Your patience and grace in working with me never goes forgotten. As a 24 year old, trying to re-establish the connection between what I saw and was thinking and trying to verbalize those thoughts was demoralizing.  As you were showing me those flash cards, you never lost the patience and willingness to continue to work with me even as I struggled.  Your emails made me smile and your cards with words of wisdom resonate.  You are a wonderful person and I feel extremely fortunate to have you a part of my family.

Dr. Quagliarello (Dr. Q), MD – Not only are you a great family friend, a father of one of my great friends I met in elementary school and baseball coach of Famous Foods, but you have been a great source of support, care and guidance.  I often flash back to the day I was admitted to the hospital after receiving the diagnosis…knowing my mom called Joyce, who in turn contacted you and you rushed down to the room where I was waiting to see the doctors just so that you could be there with my parents and I.  You were able to provide comfort to me in a time that I needed it the most, but I know that for my parents, you provided them with a sense of hope that I was in good hands at Yale and with Dr. P.  Thank you for always checking in on me during daily visits to Yale and the house, as well as providing support to my family during a tough time.

Ellen, Speech Pathologist at Gaylord Hospital – When we first met, I was in complete disbelief that my life had taken such a drastic turn that I was in need of speech and cognitive therapy but I am happy to have been referred to you.  The alphabet board; the flash cards; the exercises to restore my strength – what was I to do with those, I wondered?  You laid out a plan for me, never grew tired of watching me struggle and never lost faith in my ability – you knew I was in there somewhere and kept prodding and encouraging me to keep trying and practicing.  Sure enough, I did it and I owe a great deal of my recovery to you.  Thank you.

To all the nurses who kept guarded watch of me in the NICU: though I do not remember you by name, I know each and everyone of you cared greatly about me during that summer and I owe a great deal of gratitude to you.

Last but not least – to my tremendously supportive family.  Where would I be without your love, support, faith and comedic relief.  I was but a shell of the person I am today and I owe it all to you – you never gave up on me and continually encouraged me to strive to get better and persevere.

Here I Go Again On My Own

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So you’re probably wondering whether the story is over now.  Well, fortunately for you but unfortunately for me, it’s not.

Once I was released home with the shunt in place, I was in a “wait and see” holding pattern.  Sure, things were going really well immediately after the procedure but everyone, myself included, was curious what the following weeks and months would bring.  Just as quickly as I had my cognitive functions restored, my life was placed back on hold some more.  Nevertheless, I was not deterred and was prepared to move onward in this fight.

Good riddance to the powder I used to have to add to my liquids due to this cough thing I developed at some point.  Goodbye Dr. Seuss, thanks for the memories!  “Red fish, blue fish”– how about “no more fish”?  And how could I forget to say goodbye and thanks for the torment from those daily quizzes about news stories I’d have to read and try to write about.  It was all quite easy to push this off to the side and focus on getting back where I had left off.

There was plenty of stuff to do to occupy my time.  I had to close the doors on certain things but also needed to regain my independence with various tasks.  I knew that the road back would not be easy by any means, but I had to be optimistic and hopeful.  I wanted so badly to return to Rhode Island and rejoin my classmates and be a 24-year-old kid again, but I grew up immensely in that two-month span.  One thing at a time…

To start, the rehabilitation center wanted to see me again so they could conduct an independent evaluation and “close their file” on me if they determined there was nothing more for them to do.

For once, I was excited to go to rehab.  I’m not typically one to boast, but I was chomping at the bit to go there as I continually recalled the conversations between the therapists and my family where it was doubted that I would ever recover.

I’ve said it a lot, and I’m saying it again – I knew all along that I was in there.  So on the day that I returned to Gaylord, I could not wait to walk in there and show them the “real” me.  When I stepped off the elevator, amidst the buzz in the common area with patients coming and going, I saw my speech pathologist wrapping up her session with a fellow speech therapy patient.  When she saw me, she eagerly waved and indicated that she would be right with me.  I raised my chin proudly and exclaimed, “Take your time, no problem!” Yea, this was going to be a great day.

During our one-on-one time, she asked the typical questions – this time however, I answered each with ease. Her face said it all.   “Go ahead, pinch yourself” I felt like saying, “but this is no dream.”  I proclaimed that a medical miracle had occurred.  In all my years of living, I have never seen someone look at me in such awe.  But that’s the reason I’m sharing my story – to exemplify the beauty and amazement of the brain.  As I said a few paragraphs ago, my ability to recover was doubted.  I have grown accustomed to hearing people doubt the ability of the human brain.

There was still one last thing she wanted me to do before signing off on my release from therapy.   As part of my homework during the months of July and August, I had been keeping a folder of worksheets and journal entries detailing my daily activities to submit it to her (looking back on that folder now, it was full of nonsensical and illegible papers).   This was her method of tracking my ability to find the words to express myself, but also to see where I was on a cognitive scale. I had become accustomed to hearing her say what the assignment was and then having forgotten it completely by the time I even arrived home. This time though, the assignment was to write the story of my recovery.

My eyes lit up and I said in my head “a ha! A theme!”  Though I hate to borrow from “A Christmas Story” again, I must.  I was having flashbacks of the many moments from the past two months, just as Ralphie had of Old Bart and his Red Ryder BB gun when Mrs. Shields asked her class to write “a theme – what I want for Christmas”.   It’s sick, I know…but I love that movie! But I digress…

I could not wait to get writing.  For the first time in a long time, letters had meaning to me again and the words just poured out onto that paper.  The picture on the top was an assignment I completed prior to the surgery…the one below is my essay I wrote days  surgery.  Note the dates on each…unnamedphoto(8)

I couldn’t wait to hand-deliver it to her and when I did, she read it there and then.  She smiled, shook her head in shock and awe and said there was nothing further for her to do.

Things went very similarly with the physical therapist.  Not only did I regain my cognitive functions but I also regained strength on the right side of my body.  The facial droop had diminished, my handwriting drastically improved, I was able to walk on the balance beam again and could lift the five-pound weight ball with my right arm.

Did I ever think I’d be freed from own brain?  At times, no.  But with hard work and persistence, the brain can adapt to any set of circumstances and overcome even the toughest of obstacles.  Even still, while I was able to write a short story and converse, as well as use my mental energy to think, I needed to put all this to practical everyday use before I could even attempt to get back to law school.

Challenge accepted.

Brainstorm – Part One

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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…

 

You Raise Me Up

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One of the joys for me in sharing my story with you is allowing those who have been there with me, through the ups and downs, to share their own story – from their point of view.  As I alluded to a few posts back, my inspiration through my own personal battle was my mom. 

A breast cancer survivor herself, she never missed a beat and always had the most positive outlook on life.  While always keeping a positive attitude and outlook on life, she never stopped being an amazing mother to her three children and wife to her husband.  When I was diagnosed, I could not help but to relate to her and use her positivity as my own inspiration.  I can never say it enough – thanks Mom, I love you. 

As Chris’ mom, I cannot write my version of the story from one moment.  All of the moms out there know that we pretty much all live in the moment or the day that we are in.  So my story and memories are spread out over almost 6 years, and there is not a day that goes by that I do not remember what Chris had to endure through those years.   Actually, I should re-phrase that – it is not only what he has been through, but also what he must go through for the rest of his life (Moms never stop worrying). When we are blessed to have children they are truly in our hearts and our thoughts forever.  From the time they are born to when they are fully grown, we coddle them, protect them, guide and support them, reinforcing the positives, avoiding the negative – as my husband always said “trying to never put them in a position for failure”.  But then, life throws you a curve ball you didn’t see coming, a health problem, a large one, and you realize that you can do nothing to help your child other then pray.

I am so thankful that Chris’ DNA make-up is how it is…he has been through so much adversity and yet with every new issue and problem, he handles it with such a calmness, patience, and confidence that the end result will be fine. 

I could write many different entries in detail about Chris, beginning with the initial symptoms, to being diagnosed, being hospitalized, surgery, rehabilitation, home care, more surgery…here are a few memories that I would like to share.  

Chris began to have headaches around Memorial Day 2008.  As June rolled forward, he began to experience double vision.  After numerous eye exams with doctors who were not concerned, he continued to work throughout the month.  One week prior to his diagnosis, Chris and I drove to Newport to meet with realtors to look for apartments for him to rent while attending law school.  We saw 4 apartments, walked around the town, talked, laughed, and contemplated what we saw…all the while, I knew he had double vision and was not feeling that good.  When I continued to ask him how he felt, he said, “I’m fine, let’s keep looking.”  

Just one week later, the staff at the emergency room at Yale could not understand how he was even functioning.  Their thoughts were that he had an unbelievable tolerance for pain and that his body and brain had compensated for the tumor…the crooked smile, the slight lean to the right when he walked, the double vision…in retrospect, this was the way his body compensated and allowed him to push on and never miss a beat until that scary day of the diagnosis.   The morning of the initial surgery as he hopped up on the stretcher that was going to take him to surgery he showed no fear, just confidence.  “I have to do what I have to do”.  He smiled and said “I’ll see you later “…strength, courage, and determination.  He makes me proud that I am his Mom.

After two weeks spent in the hospital following the two surgeries, Chris was released from the hospital with strict medical procedures that had to be followed at home.  If I did not agree to them, he would have been in the hospital for at least 2 more weeks.  Chris had developed a very serious, potentially deadly, infection and he needed powerful antibiotics that had to be administered 3 times per day intravenously.  The visiting nurse came to the house the first day to show me how to administer the medication.  My routine began at 7:00 AM, then again at 3:00 and finally at 11:00, for 30 minutes each dose.  The medication regimen was supposed to be for 2 weeks, but again the curse of the summer of 2008 kicked in and his blood counts were not good.  Two weeks became four. Per usual, Chris never complained.  He went along with it all. 

A Tuesday in August – it was going to be a good day.  Our visiting nurse from the Veterans’ Nurse Association came to the house in the morning as she always did once a week to check his IV port and change the bandages.  Once complete, she initialed and dated the new bandages.  That evening we had plans to go to our town green for the weekly concert.  It would be perfect for Chris – we could bring dinner, sit back in our lawn chairs and enjoy the music.  We were going to attempt to do something not medically-related for the first time in 6 weeks.  How we were all looking forward to this!  But before we could do that we had to take Chris to his scheduled MRI.  This was the first MRI done since being released from the hospital.  There were forms to be filled out and as he was in no condition to answer this questionnaire, I filled it out for him.  I signed my name as his guardian to whom questions should be asked.  My husband took a conference call in the lobby as I waited patiently for him to come out to the waiting area after his MRI.   I will never forget the way he was smiling as he entered the room (not sure how after another long head-banging MRI).  I rose from my seat and started walking towards him when I noticed his arm and asked “where’s your IV!?”  He calmly replied “She asked me if I needed it anymore, and I told her NO, so she took it out.”  I’m a pretty calm person, but at that moment I lost it.  How could the nurse ask him that question when she knew his state of mind, not to mention that we were there waiting for him?  I immediately marched back in with Chris only to be told that they were sorry for their mistake.  We were instructed to go across the street to the hospital emergency room where the doctor would meet him and replace the IV Port.  I actually thought that although it would be close, we could possibly make the concert, but in the summer of 2008, not much went the way we expected.  Once again, Chris had to be admitted to the hospital and stay the night, where the next day a surgical team in yet another sterile operating room re-inserted the IV Port back in his arm.

Another night in the hospital, the follow up MRIs, the constant questions, rehabilitation, steroids (that made him want to eat non -stop) and then the round the clock intravenous medications, all of this became our life.  I was no longer just his Mom, I was his caregiver, his nurse, his watchful guardian, and in the state that he was in it was as if he was again my little boy of 6 years old.

One of the joys that summer for Chris was to take a shower, as this was just a simple task that he was actually able to do on his own.  “It’s time Mom, wrap my arm up!”  Indeed I did.  He loved it and I dreaded it, but this was truly one of the joys of his day!  I would wrap up his IV Port in gauze bandages, saran wrap, then plastic baggies.  I feared water would get in.  My wrapping routine paid off as I guess I did a good job – no problems!  But, who would ever think that I could be a nurse?  I’ve always said, “What we will do for our children!”

This was the most difficult period in my life.  Watching my intelligent, well-rounded, happy and most determined son who at this time should have been in law school pursuing his dream, and instead I would watch and listen to him as he sat on the front porch with my husband trying to read 1st grade level books.  I would give him spelling tests for simple words, Stephen would attempt to help him find the middle C note on his beloved piano, I would try to help him as he would struggle with the keyboard on the computer to simply find the letter ‘a’ as he was so determined to write to Ashley.  His speech and words came fumbled and slow.  When I would pick him up in the afternoon from rehabilitation, he could never remember what he had for lunch that day.  I would say some possible choices and his answer was always, ”Yeah, I think that’s what I had.”  Yet, through all that frustration and the private tears shed, there was something about him that I knew, somehow, someday he would be back to my Chris again. Maybe it was his determination, struggling every day trying to re-learn and get better.  But for me, my sign was one afternoon as I was preparing to give him his medicine – he looked right into my eyes and said, “Could you please hurry this up today!”   WOW.   That was my Chris.  So clear, so quick, so witty. 

He was definitely coming back.

Me and Mom“While we try to teach our children all about life, our children teach us what life is all about.”  Angela Schwindt

ABC, Easy As One, Two, Three

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So I had my purpose and with that, I tried to find myself again.  I knew that my old self was locked in my body somewhere and it was my hope that the physical and mental rehabilitation would help.  But my steps were baby steps.  I was physically and mentally unable to do anything on my own.  The initial meeting with my therapists did not go well at all and I wanted to permanently escape from the therapy center.  I had nowhere to go though – I was stuck in this world and my regimen was three times per week from 9:00-3:00.  I was to alternate between cognitive therapy to relearn to speak, read, write and think and physical therapy to regain the strength I lost on the right side of my body.  My face was distorted and the entire right side of my body was practically useless.

Walking into the group room and meeting the group I had been placed into was absolutely terrifying and jaw-dropping.   I was the youngest patient by, I’d guess, 20 years.  I was with other brain tumor and stroke patients.  As the new kid in the group, I was asked to introduce myself.  As you can probably guess, I was unable to do it.  Well, maybe I’d be able to tell the group a little bit about myself, such as how I just finished my first year of law school and my career goals.  Couldn’t do that either.  And that’s when it hit me.  Within a matter of a month, I had lost all that I worked so hard for over 24 years of my life.  Gone from my life was socializing with my family and friends, aspirations of earning my JD and practicing law and rekindling my relationship with Ashley.  Defeated and in search of hope, I optimistically looked at the therapist and thought to myself “you can help me, right?”

Following the group session, I was ushered into a room where I would have some one-on-one time with the cognitive therapist.  To assist me, I was given this alphabet boardABC's

I looked at her, she looked back at me.  She had to be kidding, right  – I had to be able to at least know my ABC’s. While I recognized the letter “A” as such, I was unable to communicate that to anyone.  In other words, I could not say what I was thinking at the time.  At that time, the pathologist did not realize the extent of my deficits and moved on to the lowercase letters that you see on the board.  Again, I sat there, unable to say what I was thinking even though I knew that it was the letter “A”.   Sorry Michael, it looks like those ABC’s were not as easy as one, two, three.

Every day, when my parents would pick me up from therapy, they would ask me questions about my day such as: “what did you work on?” or “what did you have for lunch – did you have ham?  did you have turkey?  did you have soup?” They waited for a response, but I did not answer because I could not remember.   More troubling though was that this was all just within minutes of being picked up.  I later learned that my brain was so compromised due to the hydrocephalus and infection that it was feared I could remain in that state forever.   I was left with persistent neurological liabilities, specifically as they relate to the processing of information and the management of language and memory.

The weeks that followed offered little hope to my family, my doctors, therapists or myself.  There was absolutely no progress being made.  With my difficulty in performing simple tasks learned years ago, I began to manifest symptoms of anxiety in social situations.  It was terrifying for me to have someone approach me who did not know what I had gone through or attempt to engage me in conversation not realizing the full situation.  In the grocery store one day with my father, I was just standing there watching the people hurry down the aisles filling their shopping carts and recalling a time that I used to do that.  Not intending to stare awkwardly, I could not help but to reminisce.  As I watched someone go to the beer section and place the six-pack in his cart, I hear a guy say to me “hey kid, is there something wrong with you?”  My father intervened and we walked away but I couldn’t help but to dwell on that moment.  I was going nowhere any time soon.

Yet, without the tireless effort and dedication of therapists, brain tumor patients like myself would never be able to resume their life and share their stories.  Even in the darkest of moments when all hope seemed to be lost, my therapists always smiled and offered me hope.   Day in and day out, they strived to assist me in getting my life back and restoring normalcy in a world only other patients and survivors can understand.  I remain forever grateful to those therapists who worked with me and the effort they each put in to help me get to where I am today.

Mama If That’s Movin Up Then I’m Movin’ Out

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Have any of you ever had a day where you feel like you have no purpose in anything you do, go to bed and repeat?  Well that was my life every day in the ensuing months post-operation.  Despite the many moments that made me just want to cave in and succumb to this new lifestyle, I refused to give in.

“Purpose.  Must find purpose.”  I was determined to not live my life by simply waking up, spilling food all over myself, wandering from room to room forgetting I had just been in there or asking myself “why” I walked into that room, working on my naming skills, trying to read and write simple words learned in kindergarten, watching some TV without any idea as to what the show was even about, sitting at my piano attempting to play just one bar of music, going to bed and repeating. It was a nice thought but reality set in.

After being released, I was still battling a deadly infection and this meant that I would need medication and additional care.  When I saw a car approach the house and two nurses come walking to the door, I thought to myself  “Are you shitting me?”  Luckily they only came to put in the port for the IV and teach my parents how to administer the medication intravenously for the next two weeks.  I couldn’t be happier when they left.  “See ya!  Bye, thanks for coming!”  Wait though – I’m supposed to let my mom handle giving me medication through an IV three times a day for two weeks??

As if I hadn’t known already, that summer reinforced upon me what an awesome mother I have.  She was meticulous in giving me the IV and doing it at the same time every day…yet, I think she was around the nurses a bit too much as she started asking the typical questions such as: “From one to ten, what level of pain are you in?  Do you have a headache?  Do you remember what you had for breakfast?  Can you tell me where we are?  What is your name?”

While it was great to be in the comfort of my own home and surrounded by my family and friends, life was difficult and I was going nowhere fast.  I had moved out of the hospital but not out of the woods.  Something as simple as taking a shower became a hassle.  In order to protect the IV port from getting wet, my poor mother had to cover the port with a medical sleeve, but then for extra measure, she would wrap my arm inside a plastic bag, tape the bag tightly and then cover it all with saran wrap.  Yes, I’m serious.  I felt like Randy from “A Christmas Story”…”Can’t put my arm downnnnn!”  Oh, the triumphs and battles I endured.

At the end of the day though, I didn’t care.  I was alive and I felt that my brain was getting stronger every day even though it was not showing to those on the outside.  While I could never express it, I felt alert and oriented to my surroundings and cognizant of the activity that was taking place around me.  My purpose became clear – I was to smile and enjoy the little things in life, simply because I could, and that I did.