Tag Archives: Brain tumor

Someone Saved My Life Tonight

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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

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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”.

Ain’t No Stoppin’ Us Now

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The Big ‘C’.

We hear about it all the time filling the airwaves, social media and conversation.  You’d be hard pressed to say that there’s anyone out there whose life hasn’t been touched by it.  My own family has been affected by cancer – as I mentioned before on this blog, my mother is a breast cancer survivor and the strongest woman who I have ever met – she even managed to raise me!

When I received my brain tumor diagnosis, the one blessing bestowed upon me was that the doctors thought it was likely benign.  A malignant tumor would have presented so many more challenges than I was already facing.

Just as with any type of cancer, brain cancer is awful.  There’s no denying that fact.  I thought maybe it was just me, but it seems to be a common thread among benign brain tumor patients to feel a sense of guilt in opening up about their struggles due to our benign status.  Trust me, we are grateful and while we do consider it a stroke of great luck to not have encountered the big ‘C’ in our journeys, our benign tumors have presented us with unique challenges which we will deal with for the rest of our lives.

This past Saturday, I met up with three truly remarkable, inspirational people from right here in Connecticut who have gone down the same path I have – Rob, Aisha and Julia.  All three were diagnosed with benign brain tumors.  As we sat around the table for coffee, sharing our stories, I felt the connection of togetherness and pride in that while we may each have undergone a traumatic experience, we are still here and able to share our stories.   The scars on our heads cannot take away our ability to live and sometimes even important, to laugh.

This meeting was something I had wanted to do for a while, to reach out and talk with others in the same situation like I am.  Now, I do not want to take anything away from anyone with brain cancer, or any other form of cancer – I hate the thought of it.  But hear me out.

Being diagnosed with a benign brain tumor and having it removed is not the end of the struggles, unfortunately.  If you been following my story, you know my continued struggles and the additional surgeries and procedures that were needed.  However, I am very fortunate in the grand scheme of things – something which I have known for quite some time, but which I sometimes forget to appreciate.  The four of us each had to fight to regain our livelihoods, which included intensive rehabilitation and requiring us to put our lives on hold.

Pre-brain tumor, Rob created a very successful life for himself.  He spent years in the music industry, working as the tour agent for musicians including Britney Spears, the Backstreet Boys, Justin Timberlake, Mary J. Blige and most recently, the Jonas Brothers.  Unfortunately though, in November 2012, Rob’s life changed forever when he was diagnosed with a brain tumor on his brain stem and spent nearly 200 consecutive days in various hospitals.  During that time, he underwent 9 surgeries and countless hours of rehab.  He developed hydrocephalus and now lives with a shunt.  He still experiences double vision and is restricted to driving during the day.  However, Rob is full of hope and is an inspiration to me and everyone around him.  I have been in Rob’s company on several occasions now, and despite his challenges, not once have I heard him complain about his life or feel sorrow for himself.  His doctors will continue to monitor the remaining tumor that is left on his brain stem and his hydrocephalus is under control with the shunt.

Aisha, whom I’ve previously mentioned on this blog, was diagnosed with the same type of tumor as me – a central neurocytoma.  Ironically enough, she grew up and lives in North Haven, CT, the same town that I grew up in and come to find out, in very close proximity to where I used to live.  Like me, she was treated at Yale-New Haven Hospital and her prognosis is good.  Aisha is a spirited and hysterical individual with a tremendous outlook.  She shared a story with us of how she applied for a teaching job at the University of Bridgeport and was called for an interview while in the hospital.   Determined, she asked if she could interview via Skype.  While she did not Skype with them, she did end up going for an interview five months later when she was home and recovered, and was the successful candidate for the search.  Despite her fortunes, Aisha is left with paralysis on her right side, requiring a cane to enable her to walk.  There’s no stopping her though – she doesn’t let her challenges bring her down.  She truly lights up any room with her positivity.

Julia reached out to the CTBTA seeking to volunteer and help our organization – not to mention, she is full of wonderful ideas!  A phenomenal personality and pleasure to meet with, I knew she was committed to this cause from the moment we exchanged our hellos.   Before her diagnosis, Julia was experiencing headaches and loss of smell, which she believed to be a sinus issue.  Unfortunately, she was diagnosed with a meningioma and underwent a craniotomy and then again surgery for a CSF leak and infection she developed.  Julia has since lost her sense of smell and can only taste certain things, but certainly has not lost her sense of humor!  During our meeting, she asked the rest of the group about our screws.  Yes, screws.  Julia pointed to a spot at the top of her forehead and another one above her right eye where the doctors inserted screws to place her skull back in.  When I reached out for her consent to share her story with you, she referred to herself as “part bride of Frankenstein, nuts and bolts and all!”  Despite her sense of humor however, she expressed frustrations with her memory and fears of neuropsych testing, all while waiting for a decision on her disability.  Yet, in the eyes of a seven-year survivor, for someone who is only seven months out, I think she’s doing remarkably well!

I think the four of us would all agree that joining together and sharing our stories – the pain, the struggles, and believe it or not, the belly-hurting laughs, was a great experience.  There’s just something about the camaraderie felt between those sharing similar experiences that is therapeutic.

So yes, while a cancerous tumor certainly is not the same as a benign tumor, tumors are tumors and they each present their challenges and obstacles.  It is my hope, at least, that together we will bring all brain tumors to the forefront – both cancerous and benign.

Because after all, grey matters.

Something To Believe In

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I’m somewhat at a loss for words…

Last week brought about many different reasons for hope and opportunity.  On Tuesday, I was scrolling though my inbox and saw an email from my doctor.  Under normal circumstances, I probably would have taken the contents of that message as bad news.  However, as I began reading the message, I realized that I went from feeling nervous and timid to shocked; my body rendered momentarily unconscious.

Before I head out the door for work, I like to spend some time watching the morning news to get me up-to-speed on everything I need to know for the day ahead.  What I find is that 99.9% of the news is full of sad, depressing stories.  And when I am on social media, I find that I have further found myself surrounded by news not for the faint of heart.

The email that I refer to contained news, but this news was different. It gave me a renewed sense of hope and acted as  a much-needed reminder of all the good and kindness in the world.

So I’m just going to cut to the chase: in that email from my doctor, I learned that through the Denver Foundation, a gift of $53,000 was made to The Cusano Family Fund for Brain Tumor Research!

Cusano Family Brain Tumor Fund - LogoAfter composing myself, collecting my thoughts and having my excitement under momentary control, I sent an immediate email back to my doctor:  Who did this?  Why was my fund chosen?  How did they know of my fund?  There were a litany of questions that I dying to ask.

During a call with my surgeon the next day, I learned that the Denver Foundation first inquired about my fund in late 2015.  Similar to a bank, a donor deposits money into an account managed by the Denver Foundation.  Once the donor decides on a cause, a directive is made to cut a check to the designated fund.  Unlike a grant that I applied for, this was a gift – a completely unexpected, selfless gift that I will be forever grateful for.

Unfortunately, the answer to all of my questions remain unanswered.  I can only guess that the person responsible follows my story.  So to the mystery person that made this donation – I hope you are reading – words alone cannot express my gratitude.  Your generosity and desire to help me in this fight is beyond appreciated, and while I know that I can never repay you, please know that I will do everything in my power to help the Yale Brain Tumor Center put this money to the best use possible in finding the cure for and treating benign and malignant brain tumors.  My fight will continue on for as long as I am able and until the cure is found – I hope.

In a world where we hear a lot of sad and depressing news, isn’t it refreshing and joyous to know that good truly exists?  For me, this is an easy question to answer.

To the generous donor – I will be indebted to you always and words will never be enough.

Auld Lang Syne

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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.

Hallelujah

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With the Christmas season now upon us and in full swing, we’re all asking each other “what do you want for Christmas?”  Let’s see – clothes, some books, an iPad?  Maybe a watch or some jewelry?  However, for me, this Christmas and holiday season feels differently.   I feel blessed every day that I wake up and go to work – just grateful to be alive and knowing how fortunate I am compared to those who aren’t as lucky as myself.

It was this time last year that I learned of the regrowth of my tumor and I prepared for yet another surgery.  This year, I am in good health, happy and grateful to be here enjoying life.  Sure, I am in stores shopping and watching as the rest of society furiously runs into stores hunting for that one special gift or the best bargain they can find.  But shouldn’t we all take a minute and remember what the “true” meaning of the holiday is?  I think so.  As Linus said to Charlie Brown:CharlieBrownChristmas

And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, Fear not: for, behold, I bring you tidings of great joy, which shall be to all people. For unto you is born this day in the city of David a Savior, which is Christ the Lord.  And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger. And suddenly there was with the angel a multitude of the heavenly host praising God, and saying, Glory to God in the highest, and on earth peace and goodwill towards men.  That’s what Christmas is all about, Charlie Brown.”  

I can relate to good ole’ Charlie Brown.  As I have gotten older and with all that I have gone through, I can appreciate the true meaning of the holiday.  Yesterday, Ashley and I went to see “A Wonderful Life” at the Goodspeed Opera House.  You know the story…a man down on his luck financially contemplates suicide until an angel shows him the value of his simple, yet fulfilling life.

It’s a relatable tale, as each of us I’m sure can remember a time when we felt a little desperate, like George Bailey.  While the beginning of this year was difficult with undergoing surgery, and then with the lives of two young fellow brain tumor patients taken too soon, I’ve been trying to take in every moment of this holiday season.  I live a quiet, fairly simple life…but walking around a beautiful quaint town with my wife on an unseasonably warm December day, going to see a show and enjoying a phenomenal dinner made me feel so grateful for this life.  The little things most certainly are the big things, and it almost feels doubly so at the holidays.

No matter how overwhelming and dark life can seem at times, there is good all around us.  Sometimes it takes an angel to drive that point home.  I have a couple new angels this year.  I hope that somewhere in the distance I will hear the faint ringing of a bell and that those angels are gaining their wings, because they’ve most certainly left their impact.  As Leonard Cohen sang: “Hallelujah, Hallelujah.”

So while I don’t expect anyone to stop running around the mall to find that perfect gift, not even myself, I ask that you just take a few moments during your holiday season to count all of your blessings, no matter how big or small.

Thank You, Friends

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Every cloud has a silver lining.

If you would have asked me in 2008 whether I would find any positives in my diagnosis, I more than likely would have said “no chance.”

Amazingly though, as I sit here seven years later, I can say with absolute certainty, the answer to that question is a profound “yes!” At the time I was diagnosed in 2008, I was 24 years old and left wondering whether I would even make it through the surgery, never mind what my future would have in store.  Through the multiple ups and downs that I have faced since that day, I am standing prouder and taller than ever.  I have found my calling.

What I failed to realize in 2008 is how my diagnosis would change my life, and the lives of those around me, namely my family.  Yesterday, along with my wife and family, we went to Yale-New Haven Hospital and presented a check in the amount of $13,500.00.

Dr. Joseph Piepmeier with my brother Stephen and I.
Dr. Joseph Piepmeier with my brother Stephen and I.

Without each and every person who supported this event, attended the concert, donated to the fund or donated merchandise for our raffle, yesterday’s presentation of the check would not have been possible.  Because of you, we are providing hope to patients and their families dealing with this diagnosis.  With these monies, Dr. Piepmeier and researchers at Yale spoke of hope and possibility to better treat brain tumors.  He discussed his hope to develop a virus to destroy the tumor cells that can be injected directly into the tumor but while not harming the brain.  To think that this money can deliver those results brings a smile to my face, and should certainly bring one to yours also.

First and foremost, I thank Ashley and my family for supporting me in this quest and continuing to be there by my side  every step of the way.  Without you, none of this would be possible.

Next, a giant thank you to our sponsors.  Without your support, this would have never been possible.  I am humbled by your generosity and compassion.  I want to make a special mention to the “Rock Stars”, our corporate sponsors Carla’s Pasta and ShelfSpace Marketing, LLC.  THANK YOU!

I would be remiss to not mention each company who donated a raffle item – J. Christian’s, Omar Coffee Co., Arnold’s Jewelers, Libero Jewelers, The Max Restaurant Group, The University of Connecticut, Ted’s Auto, Precision Concepts and The Walter Camp Football Foundation.  The raffle raised about $2,500 of the $13,500.  Thank you for your support, dedication to this event and desire to assist in this quest.  Your generosity alone merits the grandest of recognition and I hope that you can feel the pride of knowing that you contributed in such a great way.

To the bands, Broca’s Area and Goodnight Blue Moon – absolutely amazing.   You entertained the crowd all night long and gave all of us, brain tumor patients included, a reason to smile and forget about life for a while.  As I mentioned in an earlier blog post, you made the night the success that it was.

I am thrilled to tell you that next year, we’re taking the concert to the Stoney Creek Brewery in Branford.  We tested the waters and now know that this event could be the success that we originally envisioned.

So what more can I say, other than: “Thank you, friends.  Wouldn’t be here if it wasn’t for you.”

Empty Chairs At Empty Tables

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Despite how well I have been feeling of late, I cannot help feeling guilty.  Yes, I have survivor’s guilt.

2015 has been particularly difficult.  Whether it has been through social media or the evening news, we continue to hear about the tragic stories of those newly diagnosed.  And just during the  past couple of months alone, the Connecticut brain tumor community has lost two courageous warriors.  Through my involvement with the CT Brain Tumor Alliance, I am surrounded by stories of heartbreak and triumph.  Recently, I told you about Martin and Candice, two individuals who I had met through my involvement with this organization and I am proud to say that I live a better life because of the two of them.   With a smile always on their face, they never allowed their diagnosis to bring them down.  Unfortunately, both lost their battles to their horrific disease.  Yet, I am still here.

I wish life were different.  The questions haunt me: why does someone with a benign tumor like the one I had, have such a different recovery and prognosis than I?  Why was my tumor benign while another person’s was cancerous?  I wish I had answers to these questions and as to why I am okay compared to others.  However, these are questions which nobody can, or ever will, be able to answer.  My pain and sadness for the victims and their loved ones makes me want to fight harder for them.  I often remind myself how lucky I am, but it does not take away the somber reminder of those who are less fortunate.  I am attempting to turn my tragedy into a positive.  If nothing else, it has allowed me to gain an entirely new perspective on life and what is truly important.

My role as a Director of the CTBTA becomes that much more important to me and I feel the pride when the Board goes to the various hospitals and research centers to present checks.  These monies are used to better assist research and treatments; to allow children to get into MRI machines without being scared; and providing for patient-assistance funds.  The opportunities that the hospitals are to present from our hard work brings a smile to my face, providing reassurances that I am taking part in a greater change for something good.

Nonetheless, I am quite certain that I will always be haunted by survivor’s guilt.  Saying goodbye to an acquaintance with this diagnosis will get harder and harder.   However, I believe that the best way to honor those who have passed from this disease is to continue fighting in their honor.  To try to bring something good out of this experience.  So when I hear about someone with a more difficult prognosis than myself, I will always be reminded by a sense of gratitude from my recovery and how far I have come to fight on in the memory of those who have passed.

Turn the Record On, It’s Time For Something

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Yes, I know I haven’t updated you on Playing for the Cure: Brainstormin’, but I needed some time.  Time to relax and recover.  Time to enjoy the fruits of our labor and allow for donations continue to come in supporting this cause.  Time to finalize the details for the Path of Hope, a 5K Journey to Benefit the Connecticut Brain Tumor Alliance and enjoy in its success.  But also time to reflect on life and the fortunes I’ve been blessed with.

Let’s start with the concert.  If you were to ask me to summarize it in one word, I’d say “exhilarating”.

For those of you who attended and/or contributed, thank you!  I am elated to announce that, through our joint efforts with our sponsors and everyone who donated and came out to celebrate the night, we have surpassed last year’s donation for The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.   I am saving announcing the grand total until we have presented the check to Yale, but we are all very excited!  This money will go towards research (such as developing a virus that is injected into the brain to kill the cancer cells without harming the brain), clinical trials, DSC_0627 less invasive methods to treat the tumor, and beyond.

It was a night full of hope and inspiration.  We had terrific bands.  There was a raffle with amazing prizes donated from local businesses, family and friends.  I had the opportunity to meet the mother of a brain cancer patient with whom I connected previously on social media and was inspired by her words and drive to fight.  A fellow brain tumor patient, Aisha Khan, also from North Haven, came to show her support of the cause and is an avid fan of Broca’s Area.  Prior to the concert, my parents’ neighbor let them know he was unable to attend this year, but wished to purchase raffle tickets and instructed them that if he won, to have me donate his prize to a brain tumor patient or survivor.  When my parents arrived at the venue that night and told me this, I got goosebumps and felt proud knowing that we’re making a difference.  Sure enough, about halfway through the raffle, a ticket was pulled and I leaned toward the microphone and announced that the winner of this item was donating his winnings and I selected Aisha as the beneficiary of a $100 gift card donated by the Max Restaurant Group.

It’s the small things like this act of kindness that make the work and effort worth it all.

But it was also a night where I stood in the back of the room and took it all in.  I admired the hard work of my family and friends.  Watching in awe as something terrible has transpired into something so grand.  Along with my surgeon, we stood there and listened toDSC_0631 Goodnight Blue Moon.  With the first note the group sang, their vocal harmonies captured us all and their music was thoroughly enjoyed.  The band brought their merchandise to sell and graciously split their profit with The Cusano Family Brain Tumor Fund.  I purchased both CDs and have been listening to each nonstop.  “Thank you” Goodnight Blue Moon, hopefully you’ll be up for playing at next year’s show!  And a huge thank you to DSC_0633Broca’s Area for your continued support of this cause.  If you have not yet heard them play, I strongly encourage you to take a look at their schedule and catch them in an area near you.

Yet, in the midst of writing this post, the brain tumor community lost yet another truly remarkable, inspirational and brave individual to this awful disease.  Candice and I met via social media a couple of years ago and have connected at various CTBTA events.  She was a huge supporter of this concert and I.  Always with a smile on her face, she triumphantly marched on.  Sadly, last week, Candice lost her battle to brain cancer, but she lives on in my memory as an inspiration and another reason that I continue to fight on and organize this concert.

I am hopeful that next year, this concert will be even bigger and better, and I look forward to seeing new faces that I’ve never met before to connect and be a source of hope and inspiration.  And I would love for you to be the same for me.

Don’t Stop Believin’

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It’s go time!

Our fundraising concert is literally right around the corner and after a year of planning, hard work and preparation, the bands will begin their sound checks and the doors to the venue will open.  It will be, I am confident, another tremendous give back TCFBT flyer sizePlaying for the Cure: Brainstormin’ music festival.

Between now and then, I have one job – to continue to advocate for this event and encourage all of you to join my family and I on this special evening.

When I think about how all of this came to be and the reason that this concert is taking place, I think back to where I was in my life at the time I was diagnosed: I had just moved back home after my first year of law school with the hopes of eventually landing a job in government relations.  I enjoyed the challenges and the grind of working alongside my team the previous summer and educating the legislators on the important issues they were faced with.  However, none of this went as planned due to my situation.  Yet, over the past year, I have begun involving myself in these types of activities and taking a leadership role for issues I care about, namely becoming more involved with the brain tumor community.  I have started The Cusano Family Brain Tumor Fund to provide support to the doctors and researchers at the Yale Brain Tumor Center and am a Director of the CT Brain Tumor Alliance.  Being a part of these two groups offers me the opportunity to do exactly what an advocate of the brain tumor community does – raise awareness.

2014 check presentation to the Yale Brain Tumor Center
2014 check presentation to the Yale Brain Tumor Center

Last year, when we held our concert, none of us knew what to expect as it was our first go at this and we were entering uncharted territories.  But the response was overwhelming and appreciated by everyone who supported and attended the concert.  This year, we set the expectations higher.  Our goal surpasses what we gave last year and we remain optimistic that we will present a larger check than what we wrote last year.

But I am asking for a final time for your support and help to come out and make this night be what I know it can be.  Please, if you’re local to Hamden, Connecticut, mark it down in your calendar – this Saturday, September 19th at 6:30 for Goodnight Blue Moon and Broca’s Area.  If you follow Broca’s Area, you’ve heard a lot about their upcoming music video, and here is a sneak peek  of “That Way”: 

What else can I tell you?  We have tremendous raffle prizes including football tickets, gift baskets, gift cards to restaurants, a gift card for pistol permit classes, a men’s and women’s watch and the grand prize, a 2015 VIP50, 49cc, 4 stroke engine street scooter valued at over $1,000 , just to name a few.  And if you’re unable to attend but wish to support our efforts, any little bit will go a long way.

I hope to see all of my followers there and look forward to meeting new faces for a great cause!