Tag Archives: Yale – New Haven Hospital

Let The Music Do The Talking

With everything now behind me, I can now look forward to everything else in store for 2015.  And today, I wish to share with you the early details for our second annual Playing for the Cure: Brainstormin’ benefit concert for brain tumor research.

My mission and goal is simple – I want to spread the word on brain tumors to educate with the hope that my story gives hope to those who are awaiting treatment or currently recovering.  I hope that through this blog, our concert, through The Cusano Family Fund to Benefit Brain Tumor Research (a non-profit corporation which I am working to establish for the benefit of the Yale Brain Tumor Center), and through my work with the CTBTA, awareness will be brought to this very important cause and money will be raised to assist doctors and researchers in finding the cure.

So, mark your calendars for Saturday, September 19th!  My family and I are pleased that The Ballroom at the OuterSpace in Hamden, CT will again be hosting the event and hope to surpass what we did last year.  We hope that you will come enjoy the music of Broca’s Area and other great acts with one common goal in mind: raising money to aid in finding the cure.  Details regarding the event time are still being worked out and will be announced as soon as it is known.  Rest assured though that there will be great lineup of acts and of course, food, drinks and raffles.

My brother Stephen formed Broca’s Area with his classmates at the Hartt School of Music and they have some great things happening right now.  On March 26, 2015, there will be a CD release party at Black Eyed Sally’s in Hartford beginning at 9:00PM.  The album contains five original compositions, all of which I’ve had the privilege of hearing and each song is better than the previous.  

With you, together we are making a difference in the lives of those who are living with a brain tumor and the survivors.  But as a family, we wanted to do more.  So for every CD that Broca’s Area sells, a royalty will be paid to the CT Brain Tumor Alliance (the “CTBTA”).  The CTBTA’s mission is “to raise awareness of brain tumors, provide hope and support for others affected by brain tumors and raise money to support and advocate for cutting-edge research for better treatments and a cure.”  Please come to Black Eyed Sally’s to support the cause and help in this fight!

I am very pleased in witnessing how my family has rallied around my battle – for being able to take something so terrible and turning it into something positive.  Some people tell me that I am inspiration, but if not for my family and the care that I received along the way, none of this would be possible.

It’s The Eye of the Tiger, It’s The Thrill Of The Fight

Well, here I go.  Finally, twenty-two days removed from hearing that there has been a regrowth of the tumor and that an operation is necessary, I will be in surgery in less than 48 hours.

While I have a myriad of emotions running through my mind, I am overall in good spirits and feeling extremely optimistic about the operation.  I have the best team of doctors that someone in my position could possibly ask for and would not alter a thing.  I have the BEST family anyone could ever ask for and am surrounded by a wonderful group of friends, coworkers and acquaintances.  Nervous though?  Sure; I’d be lying if I said I wasn’t.  But I have faith.  I have been told that there are a lot of people who are praying for me and I can feel the positive energy.

But there is an additional motivating factor.  This past week, the sports world mourned the death of ESPN anchor, Stuart Scott.  Stuart passed away after a long battle with cancer but showed true strength and perseverance in the way that he fought.  On July 16, 2014, Stuart accepted the Jimmy V Award for Perseverance and gave a speech which resonated with me and millions of other warriors:  “You beat cancer by how you live, why you live, and in the manner in which you live.”  Though I do not have cancer, that statement is spot on.

A brain tumor, or any other disease for that matter, is no different.  From day one of this battle, I have not allowed my tumor to get the best of me.  Rather, I have stayed determined to battle back, punch for punch.  After all, I know that so long as I remain optimistic and stare down this adversity which life continues to throw at me, I will persevere.  The past six years have presented the darkest, most trying and most difficult of days but I will absolutely tell you that my tumor has taught me invaluable lessons about life and the way we should live.  Every day is a miracle and nothing should be taken for granted.

And with that, I’ll enjoy the next day with my head held high, confident that this is the close of this arduous journey in my young life.

Keep those prayers and good vibes coming.

So tumor, as I prepare to bid you good riddance, I do so by borrowing a phrase that Stuart made so popular on SportsCenter:  “Booyah!”

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.

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!

Planting The “Seeds” To A Cure

To me, hospitals have become synonymous with illness.  For some visitors, hospitals bring out hope, faith and inspiration.  In the past six years, I have not encountered many of these occasions.  Today however, it was a whole different feeling.   Along with my family members who helped to organize and put together a successful give back concert,  we returned with a check in hand.

It’s nerve-wracking seeing my surgeon, no matter when I see him.  But today, he and his staff were all smiles.  Rather than my family and I thanking them for giving me the chance to live and continue my journey, they thanked us.  What stood out to me was hearing him say that at the time he treated me in 2008, he saw my family’s commitment to me and the desire for me to get better, but that what he’s learned over the years is my family’s commitment to this cause.

I’ve said it all along – my battle and struggles fighting my brain tumor have shaped me.  The person that I am today is due in great part because of what I went through and how I almost lost it all.  But finding preventative treatments and the cure for brain tumors is my new passion.  And knowing how my neurosurgeon plans to use this money now and going forward brings a smile to my face.

Today, we donated $10,100 to The Cusano Family Fund, a newly established fund which my surgeon intends to use going forward.  Specifically, the money that we donated will be used to allow my neurosurgeon and the doctors  to use the money as seed funding.  “Seed funding” you ask?  As the best that I can describe it, seed funding helps propel projects to important milestones that will bring the research to levels that allow scientists at the Yale Brain Tumor Center to take their work to clinical trials.  In particular, Yale will be using this money to help develop nanotechnology that will deliver chemotherapy and other medicine to typically unreachable spots in the brain.  It is very special to know that money in my family’s name can have such a major impact!

But what is even better – the fact that the doctors at Yale are excited about the prospect of making this event even bigger and better in the years to come.  We already have a tentative date for 2015 and have expectations to make this concert a yearly event.  Hopefully, I’ll see all of you readers there.

And next year, hopefully we’ll present an even bigger check…DSC02447

Maneater [Reprise]

“We rarely get to prepare ourselves in meadows or on graveled walks; we do it on short notice in places without windows, hospital corridors, rooms like this lounge with its cracked plastic sofa and Cinzano ashtrays, where the cafe curtains cover blank concrete. In rooms like this, with so little time, we prepare our gestures, get them by heart so we can do them when we’re frightened in the face of Doom.”  Silence of the Lambs.

It was time, once again.  I was wheeled from my pre-op room around the hospital hallways down to the gamma knife room.  What I remember most about the gamma knife room was that it was very cold and bright.  It was a large room but without many objects.  In fact, there wasn’t much at all – just the machine where treatment occurs.  The nurse and oncologist had me lay down on the cold metal slab.  While this was nothing new, the disturbing part was when they screwed my head down to the table so that it could not and would not move during the treatment.  Much to my chagrin, the bolting down occurred and not before long,  my head was affixed to the table –  as in it was bolted to the table.  Crazy thoughts like “what if I sneeze during the procedure?” ran through my mind.

Once I was guided into the machine, I closed my eyes and let the games begin.  Yes, the games.  I envisioned the procedure something similar to a game of Star Wars.  I could not see what was happening behind my head, but I knew beams of radiation were streaming into the tumor and simultaneously destroying its growth.  In actuality, this machine administers radiation in a hemispherical array and hones in on the specific target.  Hence, the mapping that I discussed in part one of this post.  The rest of the brain tissue is left untouched.  The entire procedure lasted about one hour but felt like eternity.

I was guided out of the machine and aided to sit up where the mask was removed from my face.  The oncologist grabbed his trusty drill and began to remove the screws that held the frame in place.  Forget the fact that I could not feel the pins coming out of my skull or feeling the blood that dripped out, the sounds of the drill so close to my ears still haunts me to this day.  The pin sites were all cleaned and my head was wrapped in gauze.  photo(9)Alas, the procedure was over and I was wheeled back to where my family was waiting during the treatment. I could not be happier to be going home – but who am I kidding, I’m pretty sure that anyone who is released from a hospital stay, no matter how long or how short, is happy to be told they’re going home.

It didn’t matter to me that I felt nauseous, hot and then cold,  extremely groggy and tired from the procedure.  After all, this was all “to be expected.”  I do my best recovering at home.  admin-ajax.phpComfy chairs, good food and the best nurses.  Not sure if they would agree though…

Up to today, I have felt great and have no reason to believe that there is any further growth.  Yet, I cannot be certain and will always have my doubts.  I prepare for the worst because then, any sort of good news makes me feel like I’m on top of the world.  Yea, I deserve that.  Hopefully good news comes my way next month when I go back for my MRI.

Maneater

At the time that I began writing this blog, I had just experienced my latest obstacle in my life as a brain tumor survivor:  Gamma knife surgery.

As a reminder, at my MRI last October, it was discovered that there was a small regrowth of the tumor.  But so quickly?  Yes, this was the unfortunate truth.  I knew what I needed to do: I remained resilient despite the news; I had to continue battling and fighting on.

I was presented with three options –

(1) we could take the “wait and see” approach and re-scan in three months to ensure that there was no further growth;

(2) daily radiation for six weeks to destroy the growth of the tumor cells and radiation to the rest of the brain if other cells were discovered; or

(3)I could undergo gamma knife surgery.

I tried to rationalize and understand the benefit to each.  Each option had its pros and cons in my mind but I just could not reason with myself why I should wait and allow the monster in my head to continue to grow and possibly affect my life as it had five years ago, nor could I envision myself going in for treatment every day for six weeks if it was possible to have it done in one day.   I had already made my mind up, but wanted to hear the thoughts of my medical team.

Each of the options were presented, again all having pros and cons and different possible outcomes that could affect my livelihood, but  at the close of my consultation with the radio-oncologist, he indicated that gamma knife surgery would likely be the most effective course of treatment.  Relieved to hear this, I expressed that this was my preference.  Yet, before a treatment plan could be established, a consultation with the “brain tumor board” was necessary.

A few days later, I got the phone call that gamma knife surgery was the chosen course of treatment and I would be on the schedule before the end of the year.  Time to get my game face on yet again and prepared for battle.

I knew very little about gamma knife surgery; let alone what it even meant.  However, I soon read up on the procedure and educated myself on it.  I’ll do my best to describe the pre-procedure steps below and then in my next post, I’ll tell you about the treatment itself.

Upon arriving for my treatment, I was brought in to put on my bracelet and hospital gown. This entire routine has become all too normal for me. The nurses gave me a finger prick, followed by putting in an IV port to administer medication and contrast for the MRI.  However, this is where this procedure differs from being given anesthesia and waking up hours later.  On gamma knife day, the neurosurgeon and nurses applied a local anesthetic on my forehead where the head frame was to be placed.  Using a drill.

The head frame was made of a heavy metal and was extremely tight-fitting to my face.   When I was looking at it sitting on the table, I didn’t connect the dots that this slab of metal would soon be placed onto my face and head.  I was unable to appreciate and fully comprehend that that was the frame to be put onto my face.  While the nurse held it in place, my neurosurgeon got his drill and proceeded to drill pins into my forehead and skull to hold it in place.  Not even the localized anesthesia was not enough to prevent the pain.  But alas, the frame had been affixed to my head.  I don’t know what a vice feels like, but this sure as hell felt like what I would imagine.

Next step: picture a colander.  Something very similar looking to that was then placed on my head.  I wish I could have seen what was taking place at the time because it sounded like a great game of battleship was taking place…”B52”…”E13.”   Joking aside, the letters and numbers were the doctors’ method of mapping where to administer the radiation.

Upon completion of the mapping, it was time for the MRI.  I was wheeled around the hospital in a wheelchair with this metal vise on my face – if I could have known what the visitors to the hospital who had seen me were thinking.  I have been in for numerous MRI’s, but never one with a metal frame on my face.  The radiologist had to add another piece to the frame and this made my head feel that much heavier.  Luckily, this MRI was only 35 minutes, compared to the usual 50, but the frame and contrast combined to make it one of the most unpleasant MRI’s I’ve had to date.

With all of the “pre-procedure” work over, it was time for lunch… with the frame still on my face.  I thought to myself “how the hell am I supposed to eat lunch with this thing on?”  I wasn’t given a choice – either I was going to eat my lunch or fast some more until dinner.  So in came my gourmet lunch and drink (luckily, they gave me a straw).   I heard an occasional snicker from Ashley and my parents as I wrestled with the food to get it around the frame and into my mouth but I managed to eat and drink without spilling on myself.  This is a perfect example of a simple task too often taken for granted.

All the while, and what nobody knew at that moment was the angst and restlessness that I was experiencing.  Outside, I was smiling and content.  On the inside, it was a completely different story.  My mind was racing and I began thinking of the worst possible outcome.  But then, like I had done on previous occasions, I took a deep breath, composed myself and prepared to walk down the hall toward the gamma knife room.  A red-haired nurse greeted me.  I wondered if her name was Clarice…

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!

Changes In Latitudes

At the time that my shunt was inserted, the doctors cautioned me that I should prepare myself for the day that it would need to be replaced.  Little did I know that that day would come just four years later.  While nothing in life is certain, nor should anything be taken for granted, the actual expectation was that the shunt would only need to be replaced every 10 years or so.

I’ll admit, I do not profess to understand all of the complexities and technicalities of the brain, though I wish I did.  Ever since my diagnosis, I have become fascinated with the brain, how it works and controls every part of the body.  I soak in everything I can possibly learn about it.  My doctors informed me of the signs and warnings that I should be on the lookout for that would signal a need to replace my shunt: redness or swelling along the path of the shunt, headaches, confusion, memory problems or any other symptom I experienced prior to having the shunt inserted would indicate there could be an infection or malfunction.

Knowing everything I had learned about my shunt made the results from my six-month follow up MRI in September of 2012 surprising.  I was feeling great and functioning normally – none of the signs my doctors warned me about were ever present.  Low and behold though, diagnostic imaging showed a buildup of cerebro-spinal fluid in the ventricles and a malfunction with the shunt.  But why wasn’t I manifesting the symptoms I had previously, such as trouble with my speech, confusion and aphasia?  Had I been so entangled with the bar exam that I lost sight of how I was feeling and lost my ability to assess myself?  Despite my optimism that all was well, my surgeon decided that it was already time for a shunt revision.

Emotionally, this was a major blow to my recovery process.  I had come such a long way in the span of 4 years and now I had to face the prospect of starting all over.  I feared that the shunt might not be as effective as the first one or that complications which I did not experience the first time around might arise.  I had finally found my groove and was comfortable with my new robotic mind – and now this.  Why couldn’t something, just anything, go right for me for a change?  But hey, nothing good comes out of complaining.  Glad I can find a sense of humor in these things now530e9c97ed7a3e96831b5a77bd3ca664.

On October 1, 2012, I headed back to Yale.  As I was wheeled into the OR and instructed to lie down on the cold metal slab for the surgery, I was again faced with the question of “what if?”  But in my head, I knew everything would be okay and I’d be as good as new in no time.  Before Ashley and my parents had the chance to enjoy the spread of food that the hospital serves them while I’m having my head drilled open, the surgery was done and I was back in my room sleeping off the anesthesia.  Sorry to them all that they were unable to finish their chocolate chip muffins…

This hospital stay was different from my previous stay, however.  Rather than being a complete invalid, I was conscious and alert of my surroundings and life around me.  Then again though, how could I not be?  I was woken up every hour by the nurse and resident neurosurgeon to take my temperature, make sure that I was sleeping, asking me questions such as “do you know what day it is” or “can you tell me where you are?”  My favorite one of that night though was “Chris, have you been walking around?”  I thought to myself, “seriously, at 4:30 in the morning?”  My response: “no doctor, I’m just trying to sleep.”  I had returned to my quick and sarcastic self in no time.

I wrote a text message to my parents at 4:30 that morning to share with them the latest updates.  I felt like my life had become a daytime soap opera.  img_ynhh_tab1Rather than General Hospital, I’d call it “Yale-New Haven – Against All Odds”.

How did my life come to this, I wondered.  But it did and I have learned to accept it because after all, life is full of adversity and I had learned to readjust the sails to go with the direction of the wind.