Tag Archives: support group

You Get What You Give

Leave a comment

Are my eyes deceiving me, or are we really midway through August?  This means I’ve been on the job for a month already, and if the first month as Executive Director has taught me anything, it is that this disease is more prevalent and devastating than I think I ever could have imagined.

While fundraising and relationship building is the fun part of the job, I spend a large portion of my time meeting with the various hospitals and talking with patients and caregivers in need of support, and that is the most rewarding.  As I said when I first began this blog in 2013, I wanted to share my experience to not only meet fellow brain tumor survivors, but to be a source of hope for those who are going through this today.  I have even more admiration for our first Executive Director as I knew the job and duties covered an array of demanding and time-constraining tasks, but every day truly brings something different.

The CTBTA is proud to host the Gray Ribbon Club, a support group for patients and caregivers to meet with us to share our journeys of this disease.  We are not doctors and we are not psychologists.  But we, at the CTBTA, have all lived this disease and turned it into a positive and we want to share that experience.  Our meetings are not held in a sterile, cold hospital, but rather in an inviting setting, such as a coffee shop.  During our meeting last week, tears of both sadness and joy were shed, and nobody should feel wrong or bad about doing that.  I am overjoyed by the progress of our participants.  Witnessing the continued improvement in one particular attendee’s speech and word-finding skills causes the hairs on the back of my neck to rise.  Yet, with each celebratory round of applause, there are those raw moments where we share those dark and scary thoughts that nobody likes to talk about, but in this group, we have all been there.  As another participant shared, this is a daily battle and we need to find the joy in every day and the little things in life.  To this relentless battler – we’re here for you and you should never be afraid to let your guard down amongst us.

In addition to the Gray Ribbon Club, I have enjoyed building a friendship with one particular couple over the past month.  As young, thriving adults, their world was turned upside down when they received the diagnosis.  By a stroke of luck, we first met at a conference in June and exchanged contact information.  Later that month, I was hired in this capacity and we’ve been in constant contact since.  On two separate occasions, we met to simply talk and hopefully, allow them to forget about this hell they’ve been in even for a moment.  This family is tough and they taught me a lesson – “that there is nobody or anything in this world that can or will bring me down.”  You think you had a rough day?  Talk about resilience.

When the phone rings or the email notification chimes, I am there to respond and triage the issue, if need be.  Things that we all too often take for granted – the privilege to drive and get around; the opportunity to work and provide food for your family; our personalities and behavior, etc.  Each journey is different and with the help of our Board, the CTBTA is able to assist and through our patient assistance funds set up through the hospitals, we pride ourselves in offering hope to those in need.

For whatever tomorrow will bring, one thing is for certain – I will go home feeling a sense of pride in helping and working towards our ultimate goal of making Connecticut a center of excellence in brain tumor care.   I really couldn’t ask for anything more.

Give Thanks and Praises

Leave a comment

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.

thanksgiving-cartoon3

Tears in Heaven

2 Comments

Last night, while I took my dog to the backyard, I noticed how clearly I could see the stars.  A night sky like that lends to a lot of thinking.

I had a new blog written for you all this week, but to be honest, I just couldn’t post it at this time.  There are too many thoughts and emotions swirling through my mind currently and I’ve instead decided to briefly share them.

Most of you have heard the news of Brittany Maynard, the 29 year-old woman who ended her life with dignity and courage in the face of terminal brain cancer.  Or the story of Lauren Hill, the 19 year-old NCAA basketball player who, despite having months to live, scored in her very first game.  And lastly, here in Connecticut a young girl by the name of Nina Poeta who lost her battle to brain cancer.

These are all extraordinarily tragic stories that have, quite frankly, broken my heart.  I thought about my time being “locked” in my body and I remember thinking that if I would never recover from it, that I would not want to live. I understand Brittany’s choice.   I remember my dad letting me drive myself to rehab when the doctors cautioned me against it.  It brought me such joy and hope to accomplish that, so I can almost feel Lauren’s excitement when that ball made its swish noise.   And my family’s pain when they thought I might not survive – my heart hurts for Nina ‘s loved ones.

The bright side is that they have brought brain tumors to the forefront – a place they usually don’t see.  I pray that this is only the beginning in spreading awareness of the devastation brain tumors can cause and the research that is so terribly needed.  There are so many suffering whose stories we don’t hear about.  Maybe it’s time that we do and reach out.  Here in Connecticut, we have the CTBTA working tirelessly to better the lives of those living with this disease. Without the support of the hard-working people who organized and run the CTBTA to raise funds for prevention and treatment, finding the cure someday would be impossible.  Hopefully, other support groups follow the lead and someday, every person suffering with a brain tumor has someone to turn to.

When my dog finally pulled on the leash, I snapped out of my thoughts but not before looking up and thanking those lucky stars of mine.

You’ve Got A Friend In Me

Leave a comment

In the past week, I’ve done some thinking.  Okay, that’s a lie – I’ve done a lot of thinking.  Mostly about that bright spot on my MRI and what it could possibly mean.  Is it tumor activity or is it radiation necrosis?  Only time will tell so until December, I must let it go and move forward with my life.

And as I move forward and try to put my ordeal in my past, I have become involved with the Connecticut Brain Tumor Alliance (CTBTA).  As you saw in my last post (The Path of Hope), I am now a part of the CTBTA.  This past year, I reached out to the organization because I wanted to help, wanted to share my story and do what I can to better the lives of those who are suffering today.   A brain tumor can be debilitating but nobody should have to suffer through the ups and downs alone.  What’s more is that with the collective efforts of enough people passionate for this cause, together we join forces to raise awareness and to find the cure.IMG_0711

Sure, I went to law school and earned my law degree.  But my battle with my brain tumor has left me unable to pass the bar exam and for reasons that I previously discussed and now dealing with the bright spot in my brain, I would not even contemplate trying again.  More importantly though, working within the brain tumor community to provide support and provide fundraising efforts to finding the cure is my passion.  As a result, the sting of defeat four years after graduating and still being unable to practice law has been tamed and honestly, I am okay with how my cards have been dealt.

I am constantly being told that I am always smiling, always pleasant.  Even on those days where everything goes wrong and I just want to scream, I take a step back and reflect on how fortunate I am.  When you go through a life event such as what I went through, or any person with a life-threatening illness for that matter goes through, you realize how great life truly is.  For me, I realized this years ago and finally chose the CTBTA as the organization that I would involve myself with to share my life experiences and enjoy the same semblance of happiness with fellow brain tumor survivors.

Not only did the diagnosis scare me.  It also made me more aware of life and how we should live.  It made me smarter.  It made me brighter. Literally and physically.

I Fought The Law But The Law Won

2 Comments

So today is July 2, 2014.  “Why is that significant?”, you ask?  Well, today marks six years since my first craniotomy to remove the tumor.  Not a day goes by where I don’t think about that day, or the endless possibilities that leave me asking “what if?”  The night before that operation, I prayed that that night would not be my final night on this earth.  But here I am – tougher than ever.  At first, the one-year, two-year marks were somber reminders of what I had gone through – the travesty and fright that my family and I were faced with.  But now, they are cause for a celebration, or a “Brainaversary” as I like to call it.  Last year, for my fifth-year Brainaversary, Ashley baked me a brain cake.  imageHopefully, I’ll have another one waiting for me at home today!  Regardless, I wish to thank my family, friends, medical team and support group from therapy and school for their tireless support in my battle.  Without you, I would never be here today.  To think how far I’ve come in six short years (but what has also felt like an eternity at moments) is astounding.

Without more, I can’t leave you hanging so I’m going to get back to the story.  After all, my intent in writing this blog is not to gain sympathy votes but rather to inspire and connect with other warriors out there.

Back on March 11th, I wrote about waiting.  Reverting back to 2011, I was in a waiting period for the bar exam results to be revealed.  I’m not sure what was worse – taking the bar or waiting for results.

The exam lived up to all of the hype.  “Grueling” is the word I would use to exemplify the entire process.

Nothing could have prepared me for the moment I walked into the room and was handed the exam booklet.  Prior to that though, I was taken into the room where I would spend the next 4.5 hours.  After booting up my laptop and waiting at the prompt screen to type in the word “Start” to bring me to the first blank sheet of paper for my response, I waited some more while further instructions were read. At least some states, including Connecticut, now allow examinees to complete the essay portion using exam software that you must download and pay a license for.  Ahh yes, more money.

The overwhelming feeling of sitting with the Bar Examiner who gave the instructions to applicants with disabilities made it all become real.  All examinees must sign an oath and are then escorted into their hotel room where you are instructed to start your laptop and log in to the software.  Finally, I was handed the first six essays.  I took a deep breath, collected myself and then focused my attention on the task at hand.  While applicants can begin with any number they want, I started with number one and away I went.  The first six questions were pretty much what I expected and though I could have written for days, I did not have the stamina or time to do so.  Before I knew it, time was up and I had completed the morning session of day one – 1/4 of the bar exam was complete.  Given that the break was only an hour, and at the advice of past applicants, I brought my lunch.  I was able to find a private, quiet seat outside where I ate – all while being completely exhausted and wondering how the hell I was going to go back in there and write for 4.5 more hours.  But I had to, and I did.  The six questions administered after lunch were even harder, but maybe that’s because I was drained from the energy expended on the first six and the work-up that I put into this day.  Nonetheless, the questions all called for responses that I knew, except for one but it’s okay, I made some stuff up and explained my reasons for what I was saying.  Before I knew it, time was called and day one was over.

Day two of the bar exam is known as the Multistate Bar Exam (the “MBE”).  You know…those really long multiple choice questions that I described in part one of this post.  After the morning session and 100 questions, I was mentally and physically exhausted.  I had no energy left.  On my lunch break, I wanted to just put my head down and take a nap. I was so close now though – I would fight hard until the end, just as I had done in getting to this point and putting myself in a position to be sitting at the desk taking the exam.  Yet, questions 101-200 were more of the same: oddly worded questions, many filled with old, ancient law that required you to have a brain like a sponge.  Thanks BarBri for the charts telling me that these types of questions were only tested a very small percentage of the time.

However, the clock continued to wind down and the 6:00 hour approached.  Finally, with a few seconds to spare, I had bubbled in my final marking on the scantron sheet.  Jubilation!  I had just completed the bar exam.  Where were all of the people who said that I would never return to law school, let alone graduate or sit for the bar?  What about the medical report that stated I should forget about going back to law school and was likely to remain at the capacity of a second-grader?  When I got home, I had a celebratory dinner with my family who was there for me every step of the way.  I had nothing else to do but to sit and wait for results.

In the months that followed, I replayed questions over in my head again and again.  Fortunately, I returned to work at law firm in Connecticut where I was keeping busy in the asbestos defense practice.

October 7, 2011 was a bright and sunny morning.  This was the day the Connecticut bar exam results were to be released.  In Connecticut, the committee simply posts on its website the names of those examinees who passed the exam and are recommended for admission to the bar.  So everyone and anyone can get onto a computer and look – not the fairest or best way for nervous examinees.  Nonetheless, I was confident this morning.  More than two months removed from taking it, I truly felt that I had passed and was about to burst into tears of joy.

After refreshing the page time and time again, the list of names appeared.  The names were presented in alphabetical order by the applicant’s last name.  Slowly, I scrolled though until I came to the C’s – there were lots of them.  I looked away from the screen, collected myself and then refocused my eyes on the screen.  I went one by one and low and behold, my name was not on the list.  I tried again and again, thinking perhaps I overlooked it in anticipation of the excitement.  But reality set in and my name was not on the list.

As a result of working for a law firm and all the attorneys having gone through the process, they knew that the results were also posted.  Before I even had the time to process what had happened, I received email after email offering condolences.  I needed to talk to my family; to Ashley – I could not handle the moment.  Within minutes, I received an email from the office administrator offering me the rest of the day off if I wished to leave and be with my support group at home.

The feeling of defeat stung for a little while.  But I had overcome so much that I knew I would be back to try again.  When I received my actual results from the Bar Examining Committee, I saw the score that I earned and the score needed to pass.  Without revealing the number, I knew I had to go for it again; I’d be a fool not to.

In the ensuing months, I geared up for the February 2012 exam and worked with a tutor to master the methods to take the exam.  One of the things that I learned from my score is that it was not a lack of knowing the information, but rather, there exists a defect in my ability to communicate my mastery of the subjects in my brain into the multiple choice answers that were provided after each question.  I’ll tell you this much – my essay scores were well above-average.  Given ample time and opportunity to explain my reasoning and analysis in reaching a conclusion, I have no trouble.  But when I am presented with a long and complex problem with four possible answers, all of which could arguably be correct, I have trouble.  I worked tirelessly to master the technique of reading and analyzing within the strict time constraints presented on the bar exam.

Now, for those unfamiliar with the process, only your scores on the multistate bar examination can be used on subsequent examinations but your essay scores cannot.  So my strong essay scores would go to waste.  I had no choice but to study and prepare for the entire exam again.  I took a leave of absence from work and locked myself in a room and library for the winter months.  The tutor provided me with some suggestions on how to approach the questions and additional tips to narrow the possible answer choices down to two.  From there though, it was a matter of processing the right answers from the wrong answers.  The bar exam does not test how smart you are.  Rather, it is a test of endurance to see if you can arrive at the “best” legal conclusion to a problem in a short period of time.  After two days and six hours, you will have handled two-hundred-and-twelve legal matters and counseled that many clients.

When time was called for the final time, I felt once again that I had done it.  Fast-forwarding to May 11th – results day.  Like a nervous wreck, I checked and checked the website until the list had been published.  I looked for my name, but again, my name did not appear. Upon seeing my results, I was astounded to find that my multiple-choice score had improved but my essay scores had dipped.  Go figure.  As a result, I was right where I was the first time.  There was no fluctuation in my score.

Well, the old saying is that the third time is the charm so I decided to try again.  I took some time off in between administrations of the exam to give myself a mental break and gear up for the studying and preparation.  I also had to find a way to pay for my life so I waited until July 2013 to retake the exam.  In addition to the financial situation, I figured that some time would be the best thing for me.  I still had all of my books to prepare and after much research and reviews, I opted to purchase flash cards to help me ingrain the material in my brain to allow me to quickly recall and spit out the material when I was presented with a problem on the exam.  After another leave of absence from work and countless hours of my life devoted to studying, the two days arrived.  I was again escorted into my private room where I would spend the next two days killing the rest of my good brain cells to pass the test.  But in what felt like a snap of the fingers, it was over and I was on my way home.

At the time that I registered to take the exam, I did not think to look when the bar exam results were going to be posted.  Yes, they actually tell you the dates the results will be released for the next three years that the bar exam is administered.  So I tell you this because on October 4, 2013, bar exam results were released – and I was on my honeymoon in Italy.  I dreaded the moment, but had to look – after all, I told Ashley that if I passed, I’d buy her a Louis Vuitton.  Plus, I just had a feeling that my luck was about to turn.  I had been through hell the past five years but had just married the girl that I loved and was with her eating everything in sight and drinking the best wine on earth.  So despite the data plan that I was paying for, I did it all through my phone.  And when I checked, I felt the same semblance of defeat I had grown accustomed to.  My name was not on the list.

For some who have been down this road, all hope might be lost.  But for me, I have so much to live for and strive for.  At the current time, I have decided to hold off on retaking the exam as my scores have not improved and at the recent advice of my surgeon who looked me in the eyes and said: “Chris – you will never be measured by your performance on an exam, but rather your testament in overcoming the odds to live and the only advice I can give you is to follow your heart.  You will succeed in whatever it is you want to do.”

That was all that I needed to hear.  I knew in my heart that right now, passing the exam was not meant to be, for reasons outside of my control.

The law may have won this time.  But at the end of the day, I’m alive and well.  I have my whole life to live and an exam cannot and will not define me.

Good Riddance

Leave a comment

With a few more grades that raised my eyebrows, I shrugged it all off and went full steam ahead to the finish line – graduation day (sort of). While I would walk with my friends at graduation, I had to make up the one semester that I missed to recover (It’s still pretty remarkable to me that it was “only” one semester).   The old adage is that 1L they scare you to death (hmm, maybe this all makes sense now?), 2L they work you to death and 3L they bore you to death.  As the end of the third-year neared, all of my friends were in full-blown frenzy with the wretched bar exam quickly approaching.  For me, it was one of the happier times of my life.

It was a  bittersweet day.  Law school represented, and still represents, the most tumultuous period of my life.  Those three years brought out the best and worst of me, but graduation day meant it was time to say goodbye to so many good friends and the state that I had called home for three years.  I was on the verge of the sweetest victory I could have scripted – earning my juris doctor degree.  If you were to ask pretty much anyone on July 2, 2008 if I would ever finish my degree, you would find that the majority would say “no”.  But not me.

All that stood in the way of me and that moment was one semester at Quinnipiac University School of Law.  Why didn’t I continue at Roger Williams, you ask?  Simply put, I realized that all of my peers that I had entered this chapter of my life with would be leaving after we walk across the stage and would be returning to their respective homes to begin their careers.  Back to Massachusetts…back to Arizona…back to New York….back to Connecticut.  Everyone was scattering and what was I to do there without my support group?  I needed someone to be there for me, who knew my struggles in the classroom as well as my medical history to guide me through the last semester and so  I opted to complete my final semester as a visiting student at Quinnipiac University.

Quinnipiac is set out over acres of beautiful land with Sleeping Giant State Park in the backdrop.  On the flip side though, how was I to cope with not watching the morning fog roll through the Mt. Hope Bridge or hearing the sound of the waves crashing against the rocks?  I’d manage – at least I had my mom’s home cooked meals again to get me through.  In retrospect, my final semester at Quinnipiac was everything that I could have hoped for.  The professors were wonderful and understanding to my personal situation and the time went quickly – very quickly.  Before I could even blink, it was November 1st and talk about final exams began or presenting our final paper, which in essence, we short novels full of legal jargon.  To top it all off, the bar exam began to play on my mind and I asked myself “how” I was going to get through the remainder of the semester and through all of the adversity that awaited me.  But on that same day, I received this email…

Email

Now talk about support.  This email is just a sample of the support that I provided by my family and friends throughout law school and during my illness.  This was all the motivation that I would need to carry me through to the end.  Once again, my parents were right there to pick me up and provide me the encouragement that I needed to dig deep within and find the will to get through the semester.  I know I sound like a broken record, but without the support of my family, especially my parents, none of this would be possible and I would be unable to write this blog.

As I typed the final “ . ” of my last final exam, I was overcome with joy.

Sweet victory, I had accomplished the unimaginable.  GraduationAfter all of the trauma my brain had overcome and the adversity I faced, I was finished.  There were no words to express the sense of pride and accomplishment that I felt at that moment.

What came next was trying to figure how to pass the bar exam – but how?  There was no holding me back now though.  I had worked so hard and had come so far.  But being human, I think and wonder what I would have done with my life had I been diagnosed prior to enrolling in law school.  But what’s in the past is in the past.  I dismissed the fact that exams were now even more difficult for me than they had been previously.  After forking over nearly a thousand dollars just take the bar exam, in addition to thousands to take a prep course, I was on my way once again.  Or wasn’t I?  I’ll save the topic of the bar exam for another day.

For now, I celebrated my accomplishments.  Graduating law school…I was on cloud nine.  I was having the “time of my life.”

How to Save a Life

Leave a comment

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.

I Get By With A Little Help From My Friends

2 Comments

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

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

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

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

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

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

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

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

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

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

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

Hey Brother

8 Comments

In keeping with the tradition of having a family member write an entry, I turn this over to my brother Stephen.  However, as you can see, I did not ask him to write an entry.  Rather, I have decided to post his toast/speech as the Best Man at my wedding.   Give him another few years and then look for him on the Grammy’s.

“The water is sweet but the blood is thicker.”  At first glance, my brother Stephen may seem like he cares about a few key things: food, sleep and music.  But quickly you learn (and as you will soon see) that he may be the deepest of all our family members, and I love that about him.

A special thanks to Lenny for capturing this moment!  And I can’t thank you enough Stephen and Mary for this tribute.

Sitting, Wishing, Waiting (Reprise)

5 Comments

After a long day at Yale-New Haven Hospital, the results are in and Ashley and I have decided to share today’s news in a joint post…

Waiting.

It always seems like we are waiting – in line at the grocery store, for a much-needed vacation, for work to be over.

What bothers me most about this premise is the precious time we squander while we impatiently yearn for the cashier to just hurry up.  All that time in between rushing from here to there or waiting for something you are looking forward to may feel mundane, but it’s our time.  Chris and I learned at a very early age that time, mundane or not, should not be wasted.  In any event, it seems to me that often times the built up anticipation while we await “the next big thing” is better than what we were waiting for in the first place.  So why do we wish our lives away?

My favorite religious concept is the Buddhist idea of mindfulness. Essentially, it teaches that as people, we should strive to enter a mental state of present consciousness – to be aware of what is going on around you at that moment and to be at peace with it.   Let go of the past and don’t worry about the future – and when you reach this state of mindfulness, you will be happy.  This notion makes perfect sense, but I am admittedly one of its worst violators.

Today was a huge day for Chris.  As he earlier alluded to, a small regrowth of his tumor led to a gamma knife radiation procedure, which the doctors hoped would prevent any further growth and eliminate the need for surgery.  Today was his 3-month MRI follow-up, which would determine whether or not the gamma knife surgery was a success.

I’ve become accustomed to waiting in the hospital now.  It’s a perfect example of mundane time that I wish away – worrying about the results and just wishing to get out of there as soon as possible.  Today, while Chris underwent his MRI, I sat around and was a complete nervous wreck.  Besides the fact that I was trying to prevent a full blown anxiety attack from the loud noises emanating from the MRI machine, I was consumed with worry about the test’s results.  I knew that regardless of the outcome, we were equipped to handle it as we have in the past – but the thought of this not working and continuing to battle regrowth was just a terrible thought I was having trouble shaking.

But after all of those negative thoughts, a positive one finally emerged.  What if it did work?  This truly could be the end – well, it will never be the end because we will monitor this the rest of our lives, but as far as the initial tumor and procedures, this could be it.  I smiled.  I decided for the rest of my time waiting for the MRI to be over and for the results appointment thereafter, I would consume myself with the positive thought that there was a possibility that his tumor is at bay, not that the procedure didn’t work. In that moment, I understood mindfulness and how it can amazingly affect your experiences.  I didn’t want to let the present go, because my present thoughts meant there was hope.  For the first time ever, I embraced waiting.

And now I hand the reins over to Chris, because I think it’s his place to share the news with you…

As I stepped onto the elevator and headed up to the eighth floor where I would learn the results, mixed emotions ran through my mind.  While I was always confident today would bring nothing but good news, I had my doubts.  Let’s face it, we all have doubts.

But today, I just knew.  After taking my temperature, blood pressure and weight (oh yea, and the nurse also asked to see my ID bracelet just be sure I was who I claimed I was for the umpteenth time today), I was brought into yet another waiting room where Dr. P would walk through the door on the adjacent wall any second.

Not a minute later than the nurse walked out, the door re-opened…

A thumbs-up and a big smile.  “We got it!” he said!  My surgeon was genuinely excited and began telling me how well everything looked on the scans.  He eagerly brought me over to the computer where I saw the MRI comparison from December to today.  To my great relief, I saw but a small remnant of what the regrowth had been late last year.  Looking at the two scans, side-by-side, I could not help but to simply smile.  Although I will have to be monitored for the rest of my life, it was the first time, in five long years, that I feel like this road through hell has met its demise.

As the news was broke, I reflected back on the road I traveled to get to this point and the travesty that was brought into my life – the ups and downs, the laughter and sorrow.   And while I am realistic and recognize that this will be “my” battle for the rest of my life, I could not have asked for anything more than having such a fantastic medical team who truly has my best interests at heart.  But what is more, I have the best and most supportive family and friends a 30-year old can ask for.

champagne