The Best Is Yet To Come

Hope that everyone has been enjoying their summer, whatever you may be doing.  But with the end of summer getting closer and closer, that means September is nearing.   However, September brings Playing for the Cure: Brainstormin’ fifty days from today!2016 Poster

Thanks to all of our sponsors (special thanks to our annual sponsor ShelfSpace Marketing, LLC, as well as our presenting sponsors this year, Carla’s Pasta and Specialty Packaging), family, supporters and the committee assisting us this year, I am excited to announce that we have already surpassed the amount donated in each of the previous two years!  With an exciting new venue, two great new bands and a tremendous raffle, the excitement is hard to contain.  As you know, we are holding the concert in the celebration room of the Stony Creek Brewery.  Gone are the days of drinking Pabst Blue Ribbon and on to their craft brews.  And if beer is not your thing, they serve wine too.  If you think you might be hungry, worry not because this year, we are including a $10 food voucher!  Every weekend at the brewery, they have local food trucks come, so there will be something for everyone.  The brewery has been great to work with and I am excited to see our event come to life there!

As mentioned in a previous post, our bands this year are Ja2M and Wise Old Moon.  These bands are the perfect fit for this venue and are sure to please everyone in attendance.  In addition, we have a tremendous raffle and auction full of awesome items donated by sponsors, friends and colleagues.  Just to name some, we have two raffles: one for our grand prize, a 50cc gas street scooter, and the other raffle contains prizes such as a foursome of golf to play a round of 18 at one of two courses at Lyman Orchards, tickets to the Goodspeed Opera House, tickets to a UConn men’s basketball game, gift baskets, gift cards and many more.  Some of our auction items include an Eli Manning autographed jersey and a dinner for eight at the winner’s house prepared by the chefs at Carla’s Pasta.

But most importantly, by coming or making a donation, you will be helping doctors, surgeons and researchers find the cure for brain tumors.  To help a family and spare someone else having to go through what my family and I went through is what this is all about.

I’m not one to ask for much, but please, support this cause and come join us for a beer, some good tunes and some great food at the Stony Creek Brewery!  Hope to see you in 50 days!

For tickets, email me at chrisgreymatters@gmail.com

Can’t make it, but still want to contribute?  Visit http://www.cusanosagainstbraintumors.com

I Wish That I Knew What I Know Now, When I Was Younger

Screen Shot 2016-06-29 at 9.37.10 PMHot dogs, burgers, beer, cookouts, fireworks and independence – all typical thoughts of the 4th of July (there is still no better memory than this photo from last year’s 4th of July getaway to Puerto Rico).  For me, my thoughts this holiday weekend will always be a reminder of my journey and battle.  In the blink of an eye, maybe not for all, my family included, this weekend will mark eight years since it all began.  I still remember it vividly, being wheeled into the OR on July 2, 2008.  Will I see my family again?  Will I remember everyone’s faces?  Will I be able to speak?  The list of questions goes on and on, but I knew it was my only chance of living, so this weekend, I will be rejoicing.  More importantly though, the past eight years have shown me how to live and what truly matters.  There have been many bumps in the road and unexpected twists that I did not foresee, all of which caused me to reexamine my life, my dreams and the ultimate pursuit of happiness, but I am still exploring and figuring it out.

At age 24, I was so focused on my life and pursuing my dreams, all to make as much money as possible.  Before starting law school, right through year one, I was, and still am to the extent I can be, overly ambitious.  Growing up, I saw my parents dedicate their lives to their children.  Whether it was Anheuser-Busch and driving back and forth to New York every day, Eagle Snacks, President of Cape Cod Potato Chips, followed by owning his own company, ShelfSpace Marketing, LLC, while simultaneously serving as the General Manager of Carla’s Pasta, my father was, and still very much is, a hard worker.  My mother is just as incredible, a true inspiration.  She not only raised my siblings and I, but she also taught us values and how to be a good person; she took care of the house and kept it spotless; always had breakfast, lunch and dinner ready – never failed; managed to drive all of us to lessons and appointments.  Remarkably, she did much of this while battling and beating breast cancer and never missing a beat, and is now a para-professional at an elementary school.  They always told my siblings and I: “hard work pays off.”

However, my life changed drastically between the ages of 24 and 32 and I am still waiting for my big break.  Life has been a struggle since my diagnosis – surgeries, extended hospital stays, cognitive rehabilitation, physical rehab, etc.  In addition, and as you know, I have struggled with passing the bar exam.  I still have sky-high medical and student loan bills that I have yet to make even the smallest dent in because I’m not using my JD as I envisioned.

Yet, I am still smiling because all is not lost, not even in the smallest sense.

If this ordeal has taught me anything, it is that life does not go according to plan.  Life throws you curveballs and you have to adjust accordingly.  Sure, I could have packed it in after that semester off and thrown in the towel, but I wanted to prove to myself, and any doubters, that I could excel and earn my degree.  However, what I did not know was that the initial three surgeries would not be the end, as seizures ensued, followed by a shunt revision, gamma knife surgery and one more craniotomy.  But I followed my heart and did what I wanted and have absolutely no regrets about how the past eight years have unfolded.

At 32 years old, I look at my life in quarters – the fourth quarter was pure hell.  It presented me with challenges and hardship, but now, with my renewed lease on life, I am restarting the clock and have an opportunity to explore new avenues and opportunities that perhaps would not have been possible had I gone down the path to being a lawyer.  I have been part of some great conversations of late, some of which are right under my feet.  I intend to continue exploring alternate opportunities with my firm; I just collaborated with the staff at the Yale Brain Tumor Center on content for its new website; I have been working with the Director of Special Events at Yale University on Brainstormin’ and am open to exploring opportunities there.  On the nonprofit side of things, I am the Vice President of the CTBTA and am intrigued by what the future there may hold.  I did not know how much I enjoyed fundraising and development, but it is an area that I truly enjoy, especially for a cause that I am so passionate about.

As I continue to reinvent myself, I get down on myself from time-to-time, due to what I perceive to be, “failures”.  Yet, at the end of the day, I am reminded that I still have all that is important.  As odd as it may sound, I feel blessed to have been dealt this diagnosis, as it made me a better, stronger person and has opened new doors and opportunities for me to pursue.  I am exploring life and doing things I never thought I would do.

On Tuesday, I was interviewed by iHeart Radio and was asked, “How has this experience changed your life?”

To try to answer that concisely was difficult, but as I told the interviewer, these past eight years have been eye-opening, causing me to reexamine how I live my life and taking nothing for granted and never losing hope.  We should all strive to live in the moment and not lose sight of what is important – family, health and friends.

“I wish that I knew what I know now, when I was younger.”

I’m Walking on Sunshine

Today, I walked into Yale New Haven Hospital for my six-month MRI feeling anxious and a little uneasy, because, after all, it is Friday the 13th.  However, deep down, I was confident because I have the best surgeon ever, and I walked out the happiest man on the face of the Earth.  And after eight long years, five operations and one gamma knife surgery, the stars have aligned and it appears that I am now DONE battling my brain tumor!

You pick the adjective – relieved, ecstatic, thrilled – I’m it.  Today’s scans showed nothing, other than a normal looking brain.  Sure, my neurocytoma might have given me a battle at times and it even attempted to break me, but, I win.

I honestly don’t know where I would be if not for Dr. Piepmeier and the staff at Yale.  For a quarter of my life, I have relied on him as my surgeon, allowing him to use scalpels and God only know what else inside my brain, but he has also been a friend.  He has supported me in everything I have done, including rehabilitation, my pursuit of my juris degree, my attempts at the bar exam, supporting my family’s fundraiser and creating a fund at the Yale Brain Tumor Center for us.

The gravity of this morning’s news has not quite sunk in yet, but I know it will.  Ever since I was diagnosed and survived, I knew I had a new lease on life, but this news serves as the assurances I have longed for.GR4ZD00Z

I am not a survivor, but rather a warrior. I overcame some very scary days, but I am alive and able to share my story.  So, I am going to give back and continue advocating for the cure and fundraising to help the doctors and researchers who saved my life.  I would never have imagined that I would take this entire experience and turn it into something good, or into something that I even want to discuss, but it is a cause I care so deeply about.  I want to do as much as possible to help find the cure to brain tumors, and bring hope to the warriors battling.

Thank you family and friends for your continued support and reading about my journey – I cannot wait to see what lies ahead for me!

I Make My Living Off The Evening News

We had the great opportunity to appear today on WFSB ‘Better Connecticut’ to share my story and seek your help for our upcoming fundraiser!

Thanks For Being You

It’s another beautiful day, the sun is shining and spring is in the air.  It is moments like these where I am able to reflect and remind myself of how great my life has turned out, given all the twists and turns I overcame.

Every now and then, I still struggle to cope with understanding why this happened to me and still wondering why I was given this burden to bear.  Deep down, I know the answer, but it’s easy to forget and still wonder.  So, I take a deep breath to collect myself and think of all the positives I have going in my life, and the one constant is Ashley.

A couple of years ago, Ashley wrote that she is the luckiest, but I have to correct her – I am.  Our story is unlike anything I have ever heard; we’ve overcome things that most ordinary couples would not get through.  I’ll never forget the first time we met – it was the day I moved into my apartment in Rhode Island in 2007 and a group of us went to a local brewery, coddington logoCoddington Brewing Company, and there she was.  We established an immediate connection, talking about everything from who we are, our lives, undergrad and sports, because after all, she was a Boston fan and I a New York fan.   She was, and still is, quiet and reserved, and is smart as a whip, but not braggadocios.  We became fast friends, relying on each other for support through the rigors of year one.  We were each too afraid of taking things to the next level in fear of screwing something good up and being on our own.  However, that following summer, I decided it was worth the risk.

A month prior to my diagnosis, I took her to New York City to see Jersey Boys, followed by dinner in Times Square.  Little did either of us know at the time, but this was the last day we spent together until she saw me laying in a hospital bed.  When she walked into my room the day after surgery, I was fully aware of who she was and could hear every word that she spoke, but I physically and mentally could not respond.

In her apartment, she had a Build-A-Bear and I constantly teased her for bringing her stuffed animal to school, so she teased me back, telling me she was going to build me my own Build-A-Bear one day.  Sure enough, the day that she came to visit me in the hospital, she walked in my room with the biggest grin on her face and carrying a box.  Yes, it was a Build-A-Bear box and you can imagine what I was saying in my head!  But this wasn’t just any bear – it was a Yankees build-a-bear and after teasing her about hers, I still have mine.  However, I was purely elated that she came to visit and spend her day with me, knowing that I was a shell of the person she had just seen.   It was in that hospital room that she met my extended family for the first time and despite having my grandmother tell her “I was going to get fat” if I continued to eat my pasta carbonara that my sister brought me, she stuck it out.

As she said goodbye to me that day, I was determined to get back to Rhode Island and was willing to do everything in my power to achieve this goal and rekindle our relationship.  However, neither of us knew that two days later, I would suffer a blood clot in the brain and manifest the symptoms of a stroke while the machines I was attached to were beeping nonstop.  My parents called my sister and brother immediately and told them to come to the hospital ASAP.  Ashley, who was back in Rhode Island at the time, learned from a frantic phonecall from my sister that I was being rushed back into surgery.  Fortunately for me, Ashley did not give up on me at that time, and never has.  Instead, she encouraged me to keep fighting, keep smiling with that crooked smile and right sided facial droop.  Of all the guys in the world, she continued to wait for me.

We exchanged emails, which took me hours to write, and phone calls, and though I continually repeated myself and could never make it past “What’s new?”, she never complained.  The day after my shunt was inserted, she was the first person I called.  I was finally able to talk in full sentences again, and I wanted her to be the first person to hear it.  It was not long at all after that surgery that I made a trip to Rhode Island to visit her and we spent that weekend laughing and crying together – it was all too surreal.  And though I returned home to Connecticut later that weekend, I was destined to return to law school to complete my degree and as you know, walk with my class at graduation.  Now that school was complete though, new challenges were presented to us.  But like everything up to that point, adversity was nothing new for us.

Fast forward to the summer of 2012 when I  suffered two grand mal seizures, which required a change in my medications.  I was not permitted to drive, but that didn’t not stop me from visiting Ashley.  With a lift from a family member to the nearby bus station, I took a Peter Pan bus up to South Station in Boston where I was greeted with a smile and a hug.  Two days later, I would return to Hartford, only to repeat the cycle as often as our schedules allowed.  Nothing was going to get in the way of our special connection and bond – we overcame obstacles and made sacrifices for one another.

Now, four years later, our bond continues to get stronger by the day. Though it was my parents who began this journey with me, I grew up a lot during the past eight years and fortunately, I now have Ashley as my primary caretaker.  There are so many mornings where I call her to ask “I don’t remember, did I take my medicine this morning?” and she happily goes and looks for me.  She consistently asks how I am feeling and knows how to comfort me when I am just down on my luck.  She willingly comes along with me to my check ups and MRI appointments and never complains.  I have seen marriages crumble over this diagnosis and fortunately for us, ours continues to get stronger and I owe a great deal of that to her.

So, to correct an earlier entry on this blog, I am the luckiest, not you Ash.  Thanks for being you!

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Someone Saved My Life Tonight

Okay friends, it’s March already and that means Playing for the Cure: Brainstormin’ is quickly approaching!

Through the Musicians of North Haven, fundraising is underway for a benefit concert at Stony Creek Brewery on September 16, 2016. In partnership with the Yale School of Medicine, I am pleased to share with you that all donations are now tax deductible.   As in the past two years, one hundred percent 3e7dd804-0f3c-469d-9f2c-7fb03c8d7b08_w744_h420of the profits will be donated to The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.

First things first though – I’d like to answer a couple questions I often get asked:

What exactly is The Cusano Family Brain Tumor Fund?   The concept of the fund was first  announced by my surgeon during our first Brainstormin’ concert in 2014.  For the previous three years, Stephen and his friends performed concerts on the North Haven Town Green and donated the money raised to the town’s music department.   After the 2013 concert, Stephen and my family approached me with the idea of doing a concert for the benefit of Yale and as a way of saying “thank you” for my renewed lease on life, and I was in total agreement.  I did some thinking and researching of my own and came across the Nora Brignolo Fund.  This fund was managed by my surgeon and used for research and the development of clinical trials for brain tumor patients and within no time, we decided to organize a concert and give the money to this fund.  However, as this video evidences, the donation to the Nora Brignolo Fund turned into a donation to The Cusano Family Brain Tumor Fund and none of us has ever looked back.  My family and I have continued to earmark all of the profits from this concert to Yale because, very simply, my surgeon saved my life and without his care and the support of the many doctors at Yale, I would not be here.  I am forever grateful for the care I received and our goal is to help others fighting this difficult diagnosis.

How are the donated funds used?

One hundred percent of donations to The Cusano Family Brain Tumor Fund are given directly to the Yale Brain Tumor Center and are under the care of Dr. Piepmeier.  Your donations go toward research, namely better understanding particular types of tumors and their patterns for incidence, but also toward an educational undertaking for patients and their families.  I am pleased to share that I am collaborating with the Yale Brain Tumor Center on a educational effort to be featured directly on Yale’s website.  It is our collective hope that this effort will give patients access to new findings, but also to help the patients and their families to better understand their disease.   As a donor, you will have the ability to visit the site and learn about what your dollars are providing, and I cannot wait to share that with you all.

So, with that background information, the details! 

This year, in addition to the venue change, we are excited to have two new bands join us, one of which Stephen is the drummer in.  The first band, Ja2m, is a duo headlined by Jonathan Moore and Aaron Mannes.  If you were at my wedding, you will remember them singing “I’ll Be” as Ashley walked down the aisle or while they entertained everyone during cocktail hour, and we could not be happier to have them back with us.  Their style of music is fun and will certainly offer something for everyone.  The second act is Wise Old Moon, an Americana band from right here in Hartford, Connecticut.  Proudly, we’re keeping it in the family once again as Stephen is their drummer.  It is perfect music for an end-of-the-summer night overlooking the water.

Hopefully you already have it marked down in your calendar, but if not, save the date for September 16th for what will be the best year yet!  My family and I are so excited to hold this concert again and hope that together, with your support, we’ll help the doctors at Yale save another life.

I’m Living My Life Like Its Golden

Being a brain tumor survivor can be lonely and scary for many, but one of the great things that has come out of this ordeal is that it gave me the chance to meet patients and survivors like myself, and to talk with them about their stories.  As I mentioned a few posts back, I wanted to offer up the opportunity for guest posts from some of the people I’ve met along the way.  Amazingly, and as you’ll read, the lyrics from the song we all heard time and time again growing up “it’s  a small world after all” is true.  This entry below is from an incredible survivor and person, Aisha.  

“Letting the joy unfold…it comes naturally.”

When Chris asked that I title my post with the title of a song, naturally I thought of Jill Scott’s “Golden”. Along with “Happy” by Pharell, Golden was often heard from my room in rehab. If you happened to walk by, you’d find me jamming in my wheelchair, basking in the sunlight pouring into my room. The powerful words inspired me to keep hope and my resolve in face of a difficult situation in my life.

My story started off benign from the beginning. No symptoms, no emergency. My tumor, or lesion as it was defined at the time, was an incidental finding on a routine CT scan following a concussion I sustained from a slip on black ice, early one dark winter morning. Months later, after four consultations, surgery was advised and I agreed. I underwent an elective neurosurgical procedure in which my tumor was removed in its entirety; however, a few days later I woke up completely paralyzed on right side. In many ways, it is then that I truly feel my brain tumor journey began. I was admitted to a stroke unit in rehab and remained there for two months after which I was transferred home. I struggled to learn to walk again, write my name, and do simple grooming. There was a time when I was in rehab that I was discouraged from working or even applying, but it remained my goal to work again and by the grace of a higher being, I was able to do so. I am now employed as an assistant academic director/assistant professor of health science for a graduate program. This May, during brain tumor awareness month, I will celebrate my 2nd anniversary since surgery and it will have also been two years of therapy.IMG_6871

In addition to the personal connection I have with Golden, it also connects me with Chris. After my discharge I still had great difficulty with walking and unfortunately was unable to attend a concert featuring Broca’s Area, a CT band in which Chris’ brother is the drummer. They were fundraising for brain tumor awareness and the article was the first time I learned of Chris Cusano, a guy around my age, from my town, and amazingly with the same rare benign brain tumor as me, a central neurocytoma. I didn’t actually meet Chris until several months later at a CTBTA meeting. Shortly after our first meeting, I attended my first CTBTA event, Laughter on the Brain, in Hartford, CT. My attendance that day was truly a blessing as I could not drive yet and my father surprised me at work. He drove me from Bridgeport, CT all the way to Hartford, CT. After I arrived, I remember registering for the event and making my way downstairs where they were serving refreshments and a performance by Broca’s Area was going on. As I was making my way down, I heard a familiar beat playing in the background and found myself grinning ear to ear. It was my song, Golden. I heard a beautiful voice on the mic, a performance Jill Scott herself would approve of. It was Kismet: my unexpected arrival, my first CTBTA event with Chris, and my song was playing. Through Chris, I met his beautiful wife Ashley and the Cusano family. As we stood by the bar listening to the band, I felt gratitude to have recovered enough to be able to hear my song live and to have found a friend in a fellow survivor.

Although I have always considered myself fortunate for having the tremendous support of my family and friends, to have the support and validation of another survivor is priceless. They say “birds of a feather, flock together”, and I feel this is very appropriate for anyone who has suffered from a brain pathology such as a tumor. Through the CTBTA, I have met numerous other brain tumor survivors and recently and more specifically, “benign” brain tumor survivors. Hearing your struggles as they are experienced by another individual provides a sense of validation that is difficult to find with caregivers and clinicians. After all, even I get tired of telling my friends, family, and even coworkers how my shoulder is sore or my leg is angry. Often I’ll joke that my left leg has requested a trial separation as it feels that it picks up too much of the work for the right. With Chris and CTBTA survivors, I could joke and hear their experiences and feel that “aha” moment. I walked away thinking, “yes, they get it”.

So now, I feel honored to be a part of a unique group of individuals who have been impacted by a brain tumor. We may be weathered by the experience but we have not exhausted our resolve. In fact, each of us has in some way decided to share our experience in case our struggle may resonate with someone else. True, the path has at times been difficult, but the memorable associations I have made along the way give me reason to smile and the strength to continue “living my life like its Golden”.

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