Tag Archives: brain surgery

I’m On Top Of the World

 

What can I say!  I am humbled and blown away by the outpouring of love and support from so many.  To our Annual and Presenting Sponsors ShelfSpace Marketing, Carla’s Pasta and Specialty Packaging LLC. for making this night the best yet!  A HUGE thanks to Renee DiNino and iHeartRadio for being our emcee and giving us amazing coverage!  A very special thank you to Sullivan & LeShane Public Relations, Inc. and WTNH News 8 for sponsoring and bringing great awareness to this cause.  And while the list is too long, a big thank you to all of our sponsors who made the night possible and enabled us to pull this off.  Thank you Stony Creek Beer for hosting us again and your support during the month of September – you guys are great!

Nine years ago, I never would have thought I would want to talk about brain tumors, let alone that I would find it my passion.  As my doctor told you last night, I am cured of this and now it is my opportunity to give back and aid doctors and researchers find the cure, but to also be a ray of hope for those fighting this battle. Fortunately, we are on our way.

While we are not ready to share an exact dollar amount, I am pleased to share that we shattered last year’s efforts!!  Together, we took another step forward in helping doctors at Yale find the cure and I believe we will see the day.  And if you thought last night was a great time, get ready to celebrate my 10 years of survivorship in 2018!!  Get ready Cusano clan!

Thank you everyone! Check back soon or visit cusanosagainstbraintumors.com.

Changes In Latitudes, Changes In Attitudes

Another fun Cusano family vacation to Nantucket is in the books!

Whether it was on the beach, out walking around town, paddle boarding (yes, I did it!) or at Cisco Brewery, I was happy and carefree.  It is great to just wake up with no pressures – no phone calls or emails to respond to, no meetings to attend.  I definitely need to reward myself and take advantage of the time that I am afforded to do this more often.

However, I’d be lying if I did not acknowledge the moments where my mind wandered and I caught myself thinking about the past and the adversity I have overcome to get here.  It wasn’t feelings of sadness or depression, but rather, joy and jubilance.  If you had told me back in 2008 I would be riding a paddle board in the ocean, traversing through massive yachts, I would have told you that you were nuts. For the past nine years, nothing has been perfect – be it law school, the bar exam, seizures, weakness or more surgeries.  Yet, this week was an exception.

All of this made me realize that everything in life is in flux and nothing is permanent.  I watched the waves rush in and then wash out.  Ferries dropped people off and then came back to pick people up to bring them home.  As I sat on the ferry home, I realized that nothing is constant – we cannot bottle up good times and moments to take them home, but we can certainly savor them.

I said it earlier, and I’m saying it again – nothing in life is permanent.  While this may sound negative, it is not because it is reality. Just like life on the island, everything comes and goes.  The good, the bad, you have to just keep paddling.

As I learned at an early age, life is short and should not be taken for granted, so live it up.

Teacher Teacher

“Chris, you have a very large brain tumor, we think it is benign and the pathology will confirm it.  We need to get you into surgery tomorrow.”

What the hell did this mean?  All of this medical jargon was being thrown at my family and I and we had no clue where to turn or what was happening.  In the matter of minutes, I heard about the plans for the operation, the estimates of my prognosis, what to expect after surgery and rehab.  I was told that the tumor most likely was a neurocytoma, but that in and of itself meant nothing to me.  All I heard was brain tumor.  I heard that as long as there were no complications, I’d be home in a week and that I could resume the life I had grown accustomed to living.  Along with my family, we tried to make sense out of all of these terms and to process what my life would be like after the surgery.  However, what I learned very quickly is that there were no tools to guide us on this journey.   Other than confident doctors and nurses, there is nothing that could adequately prepare you for brain surgery, especially in such a short amount of time.  So as I told my surgeon all these years later, I wanted to help the brain tumor center at Yale in assisting  the patients/families they treat there in creating a  tool, a guide anyone in need on this journey so that nobody else has to go through the pain, the hardships, the trials and errors that my family and I endured over the next three months.

Over the past year, I have worked with a team from the Yale Brain Tumor Center in creating this very tool.  While it is still very much a work in progress, I am thrilled by seeing this idea come to life and providing a resource to all who need it.  On the Neurosurgery website of the Yale School of Medicine sits “Brain Tumor Patient Education“.

You will find facts about brain tumors, though not all types.  You can read about what it’s like to “meet your team” for the first time, and this goes well beyond your surgeon and assistant.  We have provided  general information about the various types of treatment and have ensured that the content is presented in a way that anyone can read and comprehend it.  We hear the word “surgery” but it’s so much more than an operation.  There are the pre-surgery procedures a patient has to undergo; there are things a patient should know about during surgery; and finally, life after surgery.  I am sure that reading this could be scary, but it has been put out there to help.  I woke up from surgery and had great difficulties.  My cognitive functions were gone and I was not expecting that.  However, had I have had the chance to know about these things before hand, I would have at least been mentally prepared for the risk.  You will also find information for radiation and chemotherapy here.

Finally, and most importantly for me, was the creation of “life after a brain tumor” to make for a wholly educated patient.  There are helpful links that a patient and their caregiver can visit; resources such as local support; the latest on clinical trials; etc.  Our team went so far as to break it down by life after a benign brain tumor; life after a malignant brain tumor; and life after a metastatic brain tumor.  On each, you will find helpful information on everyday living – driving, work, surveillance (continuing MRIs), eating and drinking, nutrition, traveling, financial counseling, etc.

I am excited to continue working with this talented group of nurses and researchers in putting this “guide” together.  While nothing on this site should be construed as medical advice or opinions, I do hope it is helpful for that newly diagnosed patient and/or family as they embark on this terrifying journey.  I have met so many remarkable people who have undergone each of these different experiences, as well as the caregivers who live this battle with them. Hopefully, with this education, the journey will not seem so bad and you can be a little better prepared than we were.

I guess it is fitting that I write this post just before my first-ever one year MRI (as you’ll read, the intervals for followup varies on a case-by-case basis).  Stay tuned for an update!

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”.

Auld Lang Syne

2015 was a rollercoaster – full of ups and downs.  Off the bat, the year began down at Yale for surgery to remove a recurrence of the beast and ended with champagne and dinner with Ashley.  I was operated on a Thursday and released the following Saturday, a remarkably shorter stay than my first go-around.   photo 1My surgeon and medical staff did another amazing job in caring for me and I will be forever grateful for their support.

However, things greatly improved thereafter.  I returned to work just three weeks removed from my surgery and shocked everyone when I walked through those doors and made an immediate impact in my new role.  Furthermore, I attended my first meeting as a Director of the CT Brain Tumor Alliance and found myself amongst a terrific group of caring and compassionate survivors and caregivers who understood “me”.  As a board member, I had the opportunity to hear from various hospitals, doctors and oncologists about what they are doing in their quest to treat brain tumors and ultimately find the cure and it brought such hope to all of us in the room.  It’s not common that you will find a non-profit Board composed solely of survivors and caregivers, but that is what makes our organization so unique.  Together, with our Executive Director, we held numerous events in the state to raise funds and awareness, notably the Wines of March, Laughter on the Brain, Night of Hope and the Path of Hope.

Yet, with these “ups” came more downs.  As I’ve alluded to in previous posts, the Connecticut brain tumor community lost two wonderfully dedicated individuals who devoted themselves to brain tumor awareness and funding.  They will be forever missed, but our mission has been strengthened by their loss.  For me personally, last year’s Playing for the Cure: Brainstormin’ held so much more of an importance in the wake of those two losses.  And that is why I am so excited about the prospect of an even larger and grander scale event this year – to honor those we have lost, but to continue fighting for the cure to aid those who are still courageously fighting this disease.

My family, friends and I are already looking forward to September 16, 2016 for the third year of Playing for the Cure: Brainstormin’ at the Stony Creek Brewery in Branford, Connecticut.  I will be sure to provide updates as time moves on, so stay tuned!

But where else am I going to go with this blog from here, you ask?  Admittedly, I am at a crossroads.  On one hand, I have used this blog to tell you my story and unfold the past seven years into words.  Recently I received the news of a lifetime at my last MRI and I’ll return to Yale for another scan in May.  I thank you all for being there with me in spirit along the way.  But this is not the end.

I am going to put a new twist on things and offer up the opportunity for some guest bloggers to share their story, as each brain tumor diagnosis is not the same.  Before my diagnosis, I did not know anyone personally who was diagnosed with a brain tumor.  Unfortunately, I now hear about it more frequently than I would hope.  I will start sharing with you the progress and happenings of my alliance with the team at the Yale Brain Tumor Center.  I have been told that their doctors and nurses are all eagerly working toward creating new and exciting web content with me as their liaison, so this is pretty exciting!  Yes, I said exciting – if you had asked me on June 30, 2008 if I thought I’d be excited about brain tumor work, the answer certainly would have been NO.  Ohh, how things can change and how life can throw you into a direction you never expected.  I also hope to take on a greater fundraising role on my own and in conjunction with the CT Brain Tumor Alliance.

I have found my passion and my calling.  My parents always told me that “everything happens for a reason” but I never quite understood why I was dealt this diagnosis.  However, I am certainly a better and stronger person today because of it and have found something that makes me truly happy – I have found my passion.

I look forward to talking with you all in 2016 and hopefully connecting with more people on an individual basis in a greater capacity.  This is a new year and a new opportunity to explore all of our potential.

Father and Son

As Father’s Day approaches, I decided to change things up a bit and celebrate my dad in the best way I know how – and that is to dedicate this post to him.  You may recall A Man’s Best Friend.  That post, written by my dad, reflects on my first surgery and the turmoil my family faced during that time.  Now, I return the favor and share some happier memories.

For those of you who have the privilege of knowing him, you likely think that his favorite thing is food.  I’m not going to lie, he enjoys it.  After all, he has taken the snack food industry by storm and has done some remarkable things with various companies.  However, I can tell you, as his son and growing up under his roof, that his favorite things are his wife, kids and grandson, trusty dog Chip, son-in-law, daughter-in-law and extended family.  A true family man.

There are countless memories that I can share with you, but there is one memory which I will always treasure and I know that he agrees.

The year was 1999 and the UConn men’s basketball team had just advanced to its first ever Final Four.  I was just a freshman in high school, but already had my sights set on UConn as my college of choice.  My dad is an avid fan as well and enjoys watching the games, so when UConn secured its ticket to the final four, the decision was easy – off to Tampa Bay we would go.

Going into the weekend, I remember being so confident and optimistic of the team’s chances.  I knew in my heart that they would return to Connecticut as champions.  My dad was hopeful, but not as confident.

In the national semifinals that Saturday, UConn defeated Ohio State and Duke beat Michigan State.  The final game of the season was set – UConn would play Duke for the National Championship.

On Sunday, excitement, anticipation and worry sank in.  There was a buzz around Tampa Bay, basically crowning Duke as the champions.  UConn entered the game as 9.5 point underdogs – that was quite the spread for a championship game.  After all, this was UConn’s first ever final four appearance and Duke played the 1999 season like a seasoned professional.  Regardless of the odds though, I was probably the only person who actually believed they would win.  As my dad was saying “I hope they win and think they have a shot, but they need to play their best game of the season and I think they are capable, so we’ll see.”

My dad and I spent that day talking about basketball and acting as if we were analysts.  The atmosphere was electric – on the beach, there were artists drawing the two school’s logos in the sand; television and media coverage everywhere you looked; pep bands playing the school’s fight songs; and just an overall great feeling.  As the time continued to pass and the sun set, Monday was shaping up to be a pretty special day.

When the game began, there was an overwhelming sense in the crowd, other than by UConn fans, that this game would be a blowout win for Duke.  I had Duke fans to my immediate left and we exchanged cheers and excitement throughout the game.  At halftime, UConn trailed by 2 points and nerves were settling in.  But they kept pace and as my dad said to me “it’ll come down to the final minute and whoever has the ball last will win this game.”  Sure enough, it did.

I can remember it like yesterday: with nine seconds left, UConn was up 75-74 and Trajan Langdan of Duke was driving to the basket and was whistled for traveling.  At the other end, the inbound went to Khalid El-Amin.   He was immediately fouled and stood at the free throw line to shoot two free throws – he hit the first and the second, which left Duke about 5 seconds to get down the floor and tie the game.  In what felt like the longest five seconds of my life, I nervously watched as Duke rushed down the court and with seconds to spare, Trajan Langdan approached the three point arch and then tripped and failed to get a shot off.   With that, the final buzzer sounded and UConn had done it!  As El-Amin shouted into the camera “we shocked the world!”  IMG_1714UConn was the national champion, ending Duke’s 32-game win streak.

The Trop turned into pandamonium.  The Duke fans were stunned and the UConn fans were jubilant.  The excitement of that game never wore off and brought my dad and I closer as father and son.  We talked about it for days and months, and still do.

For my thirtieth birthday, he handed me this card, along with a wrapped box:
FullSizeRender(2)

In 1999, my dad received one of the championship rings that the team received for his support of the university and I had always admired it.  Inside of the wrapped box was a UConn themed jewelry box which plays the UConn fight song and the ring.  I wear it on special occasions only, and when I do, I am instantly brought back to that weekend.  Those memories will will live with me forever, also.

That weekend is the epitome of who my father is.  The rock of our family and the person that my family and I can always turn to for support.  When my mother was diagnosed with cancer, he asked God for a sign and a maple leaf fell into his hand; when I was brought back to Yale in the midst of my misery for neurospychological testing, he again asked for a sign that I would get through this and the ladybug appeared and stayed with him for hours.  He will do anything for his family and children and I know that I speak for my family when I say how lucky we are.

When I think back on those results of the neuropsych tests, I find similarities to the 1999 Final Four weekend.  Just as he was uncertain, but hopeful that UConn would win, when we learned the results of my testing and contemplated the shunt surgery, he was again cautious, yet optimistic.   In both cases, he certainly could not have expected the miracle that occurred.  Yet, he and the ladybug assured my family and I that I would show improvement.  He knew I had a fighting chance that I could regain my cognitive functions, but was not making any guarantees as to when. Talk about “shocking the world”!

Happy Father’s Day, Dad!  Thanks for everything!

Love,
Chris

We All Need Somebody To Lean On

Tomorrow is the beginning of a new chapter.  Along with other brain tumor survivors, caregivers and the CTBTA, we are having our first Patient and Caregiver Outreach meeting.  This is my moment, my opportunity to give back and aid those in need.

As I was browsing the web earlier, I read about Ethan Couch, an 11-year old who had a dream.  As some background, when he was 9 years old, Ethan’s mother began to notice irregular behaviors from her son such as trembling, having sore feet, poor balance and struggling to put on his pants and tie his shoes.  Tests showed that Ethan had a brain tumor which was blocking his body’s ability to circulate spinal fluid, causing hydrocephalus.  I know this feeling all too well and my heart sank for Ethan.  Unfortunately, his tumor was inoperable and doctors are unable to do anything other than monitor him on a regular basis.  But Ethan had a wish – to attend the Masters this week.masters-flag

This story is truly heartwarming and special and I hope you all can find the time to read it: http://espn.go.com/golf/masters15/story/_/id/12638216/masters-wish-comes-true

Streelman got it right.  Like him, I want to open the door for someone else and give them the hope and fight they need.  Now is my opportunity for giving back and using what happened to me in my quest to help others.