Tag Archives: support

It’s A Beautiful Day

Fall is my absolute favorite season.  Humidity gives way to crisp air, trees transform to an array of stunning colors and then there’s the food… enough said.  Aside from all that, fall serves as a subtle, beautiful reminder of the transient nature of life – all that lives eventually dies.

Lately, Chris and I have heard many stories of people suffering from brain tumors that haven’t fared as well as him.  Hearing these heartbreaking stories leads to such a heavy feeling of survivor’s guilt.  Why did Chris survive and other worthy, amazing people have not?  Was it divine intervention or just pure luck?  I’m not sure what I believe, but I often wonder if we are living our lives as we should considering the enormous gift we’ve been given.  Perhaps we should be experiencing every ounce of life we can – going on African safaris, skydiving, volunteering as much time as we can to those less fortunate.  Can the way we live our everyday, middle class America, 9 to 5 life ever be enough to say thank you for the gift of life?

The fact of the matter is I’ll never know why Chris survived and the alternative will likely forever haunt me.

In terms of survivor’s guilt though, I think I do have an answer.  While driving to work this morning, I opened the sunroof and commented to myself on how it was my favorite type of autumn day …and then it hit me.  We don’t need to win a Nobel Peace Prize or travel to some far away land to really live.  To do justice to those who haven’t survived, we just need to live it well – no matter what we’re doing.  So do me a favor today.  Take all of your everyday experiences and try to make it worth something.  Smile more.  Laugh until your belly hurts.  Really taste that morning coffee.  Do something nice for someone just because.   Life doesn’t have to be “big” to be wonderful and fulfilling.

Take joy in all the simple things for those who can’t.

Submitted by Ashley Cusano

Playing for the Cure, Brainstormin’ – A Success!

I am pleased to announce that, last night at Playing for the Cure, Brainstormin’, we surpassed $10,000 in proceeds to be donated to the Yale Brain Tumor Center for research and treatments for brain tumors and brain cancer!! Thank you to everyone who came out last night and to everyone who gave donations, and to our corporate sponsors. Thank you Broca’s Area Daphne Lee Martin for providing a night filled with great music. However, the highlight of the night came from my surgeon, Dr. Piepmeier. Humbled and honored, and looking forward to our new partnership with Yale-New Haven Hospital:

 

 

Playing for the Cure: Brainstormin’

Playing for the Cure_Brainstormin'-2There’s one week to go until Playing for the Cure: Brainstormin’, a benefit concert for The Yale Brain Tumor Center next Friday, August 15th at The Ballroom at the Outer Space in Hamden, Connecticut.  All proceeds raised will be donated to the Nora Brignolo Fund, c/o Dr. Joseph Piepmeier at the Yale Brain Tumor Center to raise awareness and research for the cure to brain tumors and brain cancer.

The concert is featuring the talents of Broca’s Area and Daphne Lee Martin.  Seeing that I never blogged about it until now, I’ve included a link to one of the articles here.

My family and I completely overwhelmed by the show of support and generosity from the community already.  A huge thank you to media outlets such as the Hartford Courant, CTNOW, The New Haven Register, The North Haven Courier and The North Haven Post; our corporate sponsors The Hartford Courant, Stop and Shop, Edge Technologies, Doug Anderson, ShelfSpace Marketing, LLC, Carla’s Pasta and Severance Foods; and to all who have donated the awesome prizes for our raffle.  Your generosity and support of our effort is extremely appreciated.

For me, the work and time that are expended on putting an event like this together are a no-brainer (no pun intended) and I know my family would agree.  It is simple acts such as receiving a handwritten letter along with a check in the mail from a fellow brain tumor survivor, to receiving an email from a brain cancer warrior right here in Connecticut who had been looking so forward to our event letting me know that due to her medications and rigors of treatment that are currently wearing her down, it’s likely that she’ll be unable to attend but is sending a check regardless that make me realize my purpose in life and give me a sense of pride.

Please help me in this final week  to spread the word and help me in saying “thank you” to the doctors and caregivers who saved my life.  I look forward to seeing you all at The Ballroom at The Outer Space next Friday night!

I Get Knocked Down, But I Get Up Again

April 11, 2012 – it was my mom’s birthday!  But that date also holds another meaning for me.

I just finished eating dinner and was in the kitchen, when suddenly, out of nowhere, visual auras commenced.  I last experienced these in 2009 when I had my first seizure.  Here we go again.  Bring on the flashing lights and spinning room.  I panicked – I looked for someone, anyone, to catch my fall.  Within a matter of seconds, I was down on the floor – unconscious on the cold tile.  When I came to, I got myself over to the couch, put my head in my hands and said to myself “no, not again”.  I got on the phone with the closest people at the time – my parents, and they urged me to call Yale immediately.  The sound of concern in their voice resonates with me to this day.

Frightened and still disoriented, I called the hospital and left a message.   Within a matter of minutes, I heard my surgeon’s calming voice: “Chris – talk to me.  What happened?  How are you feeling? Is anyone there with you?  Did you take your medicine today?”  My responses were soft and slow, but at least I was able to answer.  At his direction, I took an additional Dilantin pill and assured him that I would be in contact as soon as someone arrived.

My brother, who fortunately lived nearby at the time, called and said he was on his way over to stay with me until my parents arrived.  While I pride myself on being an independent person, I have to admit that I was relieved to hear him say that he was minutes away.  As I was walking away from the door after unlocking it, out of nowhere once again, the auras returned, I twitched, spun around and was down.

I was woken up to the voices of my parents and brother, all of them nervously hovering over me.  My parents pressed me for answers to the questions, but knew that I was incapable of answering.  We all sat together for a few minutes on the couch and no one really said much.  I think we were all in shock and scared – or at least that is how I felt.  When the small talk reconvened, I told them that I talked with my surgeon and took another pill at his direction.  Rightfully so, they were concerned about the second seizure at the moment.  The three of us sat on the couch for a few more minutes, nobody saying anything and fearing the worst.  We rushed down to the emergency room at Yale-New Haven Hospital where more blood tests and an MRI were ordered and I was pumped up with medicines.  I was finally released around 3:00 in the morning.

Home to sleep for a few hours then back to Yale we went for an appointment with my surgeon.  Because I was alone for both seizures, there were not many answers to the questions as to why this happened twice in succession.   The results of my MRI were clear – there was nothing present on the scans that was cause for concern.  However, the results of blood levels provided further insight.

After my first seizure in 2009, I was prescribed Phenytoin (or more commonly known as Dilantin) and instructed to take 300/mg twice per day.  Phenytoin is used to control and prevent seizures and works by decreasing abnormal electrical activity in the brain.  The one caveat – the drug is dependent upon your body’s ability to absorb the drug in the bloodstream.

Thanks to breakthroughs in science, blood tests are used to determine whether the drug concentrations are in the therapeutic range.  For a patient my age and weight, the magical range is between 10-20mg.  When I arrived at the ER, my phenytoin level was down to six.  Yikes!  I was given a loading dose – 10 to 15mg by slow IV drip, at a rate not to exceed 50mg per minute.  After the IV had completed and the drug was in my system for some time, the blood test was re-administered.  Shockingly, the level had only gone up to an eight.

My surgeon referred me to a neurologist – someone who specializes in and is better equipped to handle seizure disorders.  During my visit with the neurologist, he explained that Dilantin’s requirement to stay concentrated in the bloodstream does not work for some people for reasons unknown.  Fortunately, there are other medications that can be taken that do not depend on blood concentration.  I take this moment to introduce levetiracetam, also known as Keppra.

I am prescribed to take the maximum daily dosage of 1,500/mg twice per day.  With Keppra, the drug instead works by communicating with nerve signals in the brain.  I just picked up my prescription at CVS and have the paperwork here which reads: “Leveiteracetam has been shown to decrease the number of seizures in adults and children.  It is not known how it works to prevent seizures.”  Awesome right?  But for whatever its worth, and knock on wood, I have been seizure free now since April 11, 2012.  I’m not sure if that was my mom’s birthday wish that year, but I like to think so.

Life continues to throw curveballs at me.  Though I never hit one of them as a kid, probably because I never had good eyesight (I like to think that it was due to the tumor growing, but that’s highly unlikely), I knock everyone out of the park now.  Watch out Ty Cobb, I’m coming for you.

Good Riddance

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.”

Celebrate We Will Because Life Is Short But Sweet for Certain

So you didn’t get that job that you applied for?  Or maybe you got a C as opposed to B in that class?  Did you stay at the office late today, and yet still have piles of work to get through?  Your car’s broken down…again.  Sure these are all legitimate problems and life sure is full of them.   What matters is how we deal with them and how we come out on the other side.

Coming home in May, not even a year removed from receiving my diagnosis, I had a new outlook on life.  My first semester back at law school was eye opening.  Don’t get me wrong, I wanted to do well and maintain my class ranking, but I also refused to push myself too hard and kill myself over schoolwork.  During my hospital stay, my medical team constantly reminded me that I would never be measured by my classroom or courtroom experience.  No matter what happened after my hospital stay, I would always be defined by my determination and perseverance in overcoming obstacle after obstacle.

During the ensuing months following my surgeries, I was a spectator to life.  I viewed everyday occurrences with an open mind.  No longer did I stress about getting an A.  Did I want to?  Of course (I am Type A, after all); but I knew that if I attended class throughout the semester, analyzed the readings, studied and completed practice exams, I had done all that I could do and whatever grade I earned at the end was okay with me.

From day one of the first year, the focus is finding a job and earning exorbitant amounts of money.  Now, let me clear this up for you right now – that’s a fallacy.  Unless you finish in the top 25% of the class, you bounce around from job to job or maybe even through temp agencies and in real life, never make those millions you imagined were possible.  After my performance first year, I didn’t even concern myself with making it into the top quarter of the class, but even if I did, I’d be crazy to push myself that hard.  Life is far too short and fragile to let one insignificant thing in the grand scheme of things consume you.  I watched countless friends obsessively agonize over outlining and analyzing cases and statutes to earn the grade they were striving for.

The same holds true in practice.  I am simply amazed by how many of my peers stress over getting the hours in or getting their motion heard on the court calendar.  I just watch in amazement and think to myself “what if?”  When I witness such events, it takes every ounce of energy out of me to not say something, but I understand it – we all work hard and want good results for efforts.  If you work for a law firm, you have billing requirements that you must meet by years end, and after all, we need to keep our jobs to put food on the table.  But at what cost? It makes me wonder why as a society, we have created all of these human manufactured stressors.

I don’t mean to diminish your worries.  They are real and legitimate.  At the same time, I urge you to never stop focusing on the big picture and seeing what is truly important.  It seems to me that we too often take for granted what we have and lose sight of what really matters because we are too busy focused on nonsense.  Ever since I’ve recovered, I’ve felt like my life is moving in fast motion.  I have since learned to make sure I then take a deep breath and calmly approach the situation when I find myself getting stressed or frustrated.  My persona has changed immensely and I know this is a blessing in disguise.  Gone are the days where I rushed around, driving myself nuts to get everything accomplished by some arbitrary deadline.  I got my second chance, and I refuse to waste it by missing out on life’s joys.

For me, when real trouble arose, the question was not “do you want to have brain surgery?”  There was no option or decision to make – it was  “Chris, you need to have brain surgery.”  Not once, not twice…but four times, in addition to one gamma knife surgery.  I had brain surgery...This was my life and the cards that I was dealt and I coped with it all.  Like other situations, it’s not ideal, but unlike any of the scenarios in the first paragraph, this is a REAL problem and there’s no time to think about it or mull over your decision.  Instead, you have to rise to the occasion and learn to grow from it.  My obstacles have aged me years beyond my date of birth and I no longer stress over situations like those I mentioned here.  I’m the first to admit it – prior to my surgery, I focused on school and finding a job.  However, after my diagnosis, I realized that the important things in life are those that we have in front of us – family, friends and health.  With those three things in hand, the goals are infinite and life is good.  Yet, I still find reasons to throw on this t-shirt…

Back to School. Back to School…

…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.