Tag Archives: cognitive therapy

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…

 

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.