Tag Archives: support

Ain’t Nothing Gonna Hold Me Down

I waited in anticipation.  I warded off all of those negative thoughts running through my mind thinking it would result in something positive.  Finally, after a long day of sitting and waiting, the door opened and in he walked:

“You’re going to need an operation, Chris.”

I stood there speechless and in shock – how is this happening again?  Did he really just say that?  Haven’t I already been through enough?  Why me?

My MRI showed further growth of the spot we have been watching since day one in 2008 and which was radiated last year.  The tumor is the size of a grape and is sitting in the “front lateral horn” of the brain.  Thankfully, this is a benign tumor but is acting “atypically”.  The typical neurocytoma, once removed and blasted with high dosages of radiation dies off and never grows back.  In all of his years, my surgeon has never seen a leftover piece of neurocytoma like mine grow in size after radiation.  For whatever reason, likely because this is the story of my life, my tumor did not respond to the gamma knife surgery and is persistent.

In the blink of an eye, I went from being in good spirits and thinking of which restaurant Ashley and I would celebrate at, to looking at my calendar to determine when the surgery would be scheduled for.  An exact date has not yet been decided upon but it will be sometime in early January.  I’ll have to go down to Yale for my pre-op appointment and go through the rigors of surgery all over again.  As I sat there listening and absorbing it all, I thought about myself but also the effect this has on Ashley and my family.  I am not worried about what will happen in the operating room as I have the utmost and complete faith in my neurosurgeon and doctors.  I am not however looking forward to the process of being operated on again and the days/weeks needed to recover.  And for my family, I’m sure this is not easy.   But together, we will all get through this and have a happy remainder of 2015.

As I gather more information, I’ll update you.  But if you’re on the other side of this post, do me a favor and enjoy every moment of every day because we don’t know when our fortunes may change.  Enjoy this holiday season with family and friends and give thanks and blessings for the everyday gifts we have.

Like my family said to me, for a reason that we are all still searching for, I was given this cross to bear and someday/somehow, I will understand why.  And you know what, I’m okay with it.  I’m not going to stop living or let today’s news bring me down.  530e9c97ed7a3e96831b5a77bd3ca664

UPDATE:

My surgery has been scheduled for January 8th.  For the past few days and in the midst of enjoying the holiday season, I’ve been reviewing my employer’s short-term disability insurance policy to make sure everything can still be provided for.   Then, to top it all off, our company has changed health insurance once again and for the fourth time in four years.  Fortunately, my surgeon participates in the plan.   As if worrying about my health and the procedure isn’t enough, all of the other stresses that inevitably come along with it hit you like a bullet train…a topic for another day.  At least it’s almost Christmas and hopefully I’ll forget about all of this for a day.

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

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

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

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

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

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

Everybody Hurts

If you have been following my blog, you probably get the sense that I am an overall positive person who has overcome some pretty great adversity.   But life hasn’t always been so grand and happy for me.  During my first semester back to law school in 2009, I struggled emotionally and lived in fear of the unknown.

As I was back in Rhode Island, gone was the comfort of being surrounded by my family 24/7.  Gone was the comfort of knowing that Yale was five minutes from my house.  From January 2009 through May 2009, I was scared.  On top of the possible side effects and the new way I was living, I was constantly worried about all of the what-ifs.  Above all else – I had to find a way to be okay with “my new normal.”

Upon arriving back in Rhode Island, my friends offered their support and assistance with anything that I needed.  But what nobody could offer me during these times was the guidance and calming effect that was provided by my doctors, therapists and family.  I took a full course load, which in retrospect I probably should not have done, but I needed to prove to myself that all would be fine and live my usual life and resume my schedule.  What I neglected to realize was that I couldn’t just jump back in – things needed to be readjusted and put into perspective all over again.

Classes proved difficult.  I had trouble managing my time as the readings took a lot longer than they had previously; reading through the legal jargon just to understand the judge’s reasoning behind his/her decision took hours.  I struggled with taking notes about what I had read.  This became a major problem, as my final exam grade was contingent on what I could absorb and comprehend from these readings.  I struggled and wanted to just quit at times.  Nonetheless, I put a smile on my face and carried on.

What nobody knew is what a dark and difficult time this was for me. Even though I was so happy to be back in school working toward earning my degree, I was struggling and was spending more hours in my professors’ office hours each day to go over the materials instead of living the everyday 24 year-old life I was used to.  Was the neuropsychological testing correct – were my cognitive impairments permanent?  Was I going to fail out of law school?  As the semester came to a close, I panicked because finals were approaching and in law school, final grades are based upon one grade – your score on the final exam.

In addition to this stress, my personality was changing.  I was suddenly guarded about who I was as a person and as a law student and became insecure about my knowledge and skills.  When in class, I listened to my peers recite the case with ease and making it look like a walk in the park.  I grew irritable and frustrated with my abilities (or should I say, inabilities).  There were many moments of loneliness and a feeling of helplessness.  Then, there were moments of emptiness.

After a night out at a bar with my friends, we all returned to Ashley’s so the night would continue but I noticed that my friends were happy, loving life and seemingly without a worry in the world.  As I sat there watching, I began to reflect on what had happened to me and what I had been through six months prior.  The magnitude of emotions got to me and I went to an upstairs room, sat on the bed reflected and let my emotions pour out.  Fortunately, Ashley, being my rock and support system, immediately noticed and rushed upstairs behind me.  She did not say anything, nor did she need to.  She tried to be strong for me and to keep me encouraged but little did she know, I saw a tear rolling down her cheek.

My story has had so many ups and downs that are full of laughter, sorrow, inspiration and hope.  But I have never, until just recently, expressed the emotional toll it took.  I don’t know why, but recently I’ve felt the urge to share, in particular because I have been hearing of more and more people undergoing a hardship.  Dealing with a brain tumor, or any illness or disease for that matter is scary and your life gets turned upside down and nobody should have to face it alone.

So while I have shared a lot about the positives of my story, there have also been a lot of emotional times as well and for those of you who are undergoing something similar, you know what I mean.

The Path of Hope

Today was the “1st Annual Path of Hope: A 5K Journey To Benefit The Connecticut Brain Tumor Alliance” at Hammonasset State Park. Despite my MRI results this past Friday,  the sun was shining, the air was brisk and the atmosphere was great and it was a reason to celebrate.  I felt so fortunate to be surrounded by my family, friends (both old and new) and to talk with other brain tumor survivors, patients and caregivers on this day.  When I see families like mine and hear of stories similar to what I went through, it gives me a sense of knowing that our everyday problems that we complain about are not so significant.  It was a great day and I am happy that I got involved with such a great organization.

I served on the Walk Committee and was asked to say a few words and offered the opportunity to play my song, if I wanted to.  I was honored and humbled by this offer and was very happy to share my story with others to serve as inspiration and hope for those undergoing this terrible diagnosis.

Fortunately, Ashley captured the moment on video and I am sharing it here.  Ironically however, my song was “interrupted” yet again.  Enjoy!

Roller Coaster Ride

So the first Friday in October came and went – yes, results day.

Before I get to my results, I would like to congratulate all those who passed the Connecticut bar exam.  Enjoy this time and your day being sworn-in as a member of the bar!

As for me?  The day did not go as I would have scripted it to.  I was supposed to be rejoicing and celebrating with you.  Yet, for reasons unknown at this point in time, my fight shall continue on.

Quite simply, yesterday’s results were inconclusive.  In comparison to my scans taken in March, what appeared on yesterday’s MRI was noted as something to watch. Last December, when I went in for the gamma knife surgery, the area where treatment was being applied was clearly visible and clearly tumor.  The growth was blasted with a high dose of radiation and at my follow-up MRI this past March, my surgeon gave me a thumbs up; all signs pointed to the conclusion that the procedure had killed off the tumor cells and any remaining cells would soon wither away.

Yesterday, I had the chance to see for myself the three images – the MRI from last December, the MRI from March and then the MRI from yesterday.  He placed all three of them on the screen for us to see.  March compared to December was significantly smaller and indicative that the treatment was working.  The scans from yesterday showed that the treatment site was still the same size as in March – but with one notable difference.  Brightness.

Brightness on an MRI is indicative of tumor activity.  But brightness can also indicate “radiation necrosis”.  Radiation necrosis is an accumulation of dead tissue and dead cells killed off by the radiation.  My medical team was going to review the results with the radiologist for his opinion.  Aside from that however, I’ll continue to monitor myself for headaches, dizziness, forgetfulness, eyesight problems, vomiting and nausea.  Yet, because of the location of where the tumor originally was, I do not experience any of these symptoms nor have I ever until the very last-minute in 2008 at which time the tumor was likely 3-6 years old.

So where do I go from here?  I’ll wait some more.  I am being rescanned in December and we’ll again review those results and develop a plan if needed.  If it is radiation necrosis, there would be nothing that I need to do.  However, if results indicate that this is tumor activity, further treatment and even surgery could be an option.

This is the story of my life it seems.   But I am resilient and a fighter.  I have never complained or felt sorry for myself and have always maintained a smile on my face through it all and I will continue to do so.  For the next two months, I will do my best to not obsess over this, but being human, that is easier said than done.  However, thanks to great family and my medical staff, I’m in good hands and will once again come out on top.  Maybe I’ll even have my own swearing-in ceremony as a member of a survivor/relentless fighter association!

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.”