Luck Be A Lady

Life is unpredictable.

As my childhood habit of walking around with a briefcase clearly indicated, my career path was assumed from the beginning.  My high school job at a law firm, political science degree from UConn and  admission into law school only solidified my determination.  Well, surprise, surprise.   A brain tumor, a few failed attempts at the bar exam and a new-found interest in fundraising later, I found myself walking out of the law firm I worked at since I was 16 for the last time.

For my readers who do not already know, I recently joined the United Way as a partnership manager in development.  I am grateful to my former employer for taking a chance on me as a junior in high school and grooming me to succeed in anything I set my mind to.  Through my ups and downs and all of the trials and tribulations, they supported and encouraged me.  Who knows though, maybe it was meant to be?

During my first few weeks at the United Way, a lady stopped by and after her second visit, left me literally speechless.  She was not there to give me business or build upon a relationship though; her red and black outfit gave her away, my ladybug was back.  Her first appearance was when my office neighbor walked in and showed me who flew onto her hand – not even knowing my story or the connection.  The next week, there she was again, perfectly propped on the wall.

Immediately, any second thoughts melted away and I knew that this was a sign that I had made the correct move for my career.  Prior to accepting this position, I knew that a career change was necessary and would allow me to fulfill my purpose in life.  But giving up something that I had worked so hard for and that this story is so connected to was difficult.  Yet, her presence in the office gave me the assurance I needed.

The change from the private sector to the nonprofit world has been difficult at times and the road to mastering the skill set I need to succeed will be long and challenging.  However, I am eager to make a philanthropic impact on my community and to simultaneously fine-tune my ability to have a personal impact on the brain tumor community to help all the doctors, researchers and nurses who care for patients.

I have not had the opportunity to meet with the department Chair or the resident overseeing the study on central neurocytoma at Yale, but am eager and excited to see what they have learned.  I am humbled that in 2018, ten years after my diagnosis, a study will be published and a resource available for the next patient diagnosed with this very rare tumor.  Through the Cusano Family Brain Tumor Fund and through the many donations received from my readers, we are funding this important research study and collecting samples from another major university.  Back when I was diagnosed, there was not an abundance of information on this rare tumor.  Gratefully, we are on the brink of making this a reality.

My passion and pursuit to help those in need will not stop here though.  I trust that the skills I develop in my new position will allow me to make a greater impact and give hope for anyone diagnosed or who is facing this dreaded diagnosis.

Everything happens for a reason and I am content with where I am.  Though it took me nine years to come to this realization, I understand and believe that I am not an attorney for a reason and that I got sick so that I can help people.  More than anything though, I thank the ladybug for making her appearances and assuring me that this was the right move and for her continued presence in my life.

I Didn’t Understand It Way Back When; But Sitting Here Right Now, It All Makes Perfect Sense

This past Thursday, we made a visit to the Yale Brain Tumor Center to present the net proceeds of our fundraiser.  The majority of hospital visits are not fun, but this day is always filled with smiles because of the hope that it inspires.  The collaboration between Yale and my family is truly special and something that I know each of us takes to heart.  I cannot thank my family and friends who helped to make this year such a huge success and cannot wait to top it in 2018 as we celebrate my 10th anniversary!

Thank you, Wise Old Moon, for headlining this event and for your enthusiasm to be a part of this event the past two years.  I wish to again thank our corporate sponsors – ShelfSpace Marketing, LLC; Carla’s Pasta; Specialty Packaging; Al Mac Motors; Beirne Wealth Consulting; Sullivan & LeShane, Public Relations; iHeart Radio; WTNH; Stop & Shop; Bank of Montreal; People’s Bank; Connecticut Public Broadcasting Network/CPTV; Edge Technology; Unitas Club; Updike, Kelly & Spellacy, P.C.; Henry, Raymond & Thompson; Guida’s Dairy; Blum Shapiro; Sardilli Produce; Webster Bank; and Russo, Russo & Slania, P.C.  Thank you Shoreline Cafe & Catering and Beach Donuts for donating the sandwiches, donuts and coffee!  To every individual and company that donated items to our raffle and silent auction, your support is appreciated.   And last but not least, thank you Stony Creek Brewery for being an awesome partner in this venture.  The support and awareness that you are bringing to brain tumors is amazing and appreciated by everyone affected by this diagnosis.

Through everyone’s efforts, a grand total of $42,800 was donated to the Yale Brain Tumor Center this year!  As a survivor of this diagnosis, with my family and friends who wanted to help my doctor and his team in some way, I am in awe that between our four concerts and the donation from the Denver Foundation, we have donated $156,650.00 in four years!   The money we have donated thus far has been used as seed funding to help doctors and residents take their research efforts from concepts into reality.

To date, there has been a dedicated undertaking to understand more about the triggers of particular brain tumors and their drivers.  Research is also ongoing to develop nanotechnology to safely administer viruses to particular tumors to destroy the cancer cells, but without harming the brain.

Additionally, within the next six months, Yale will be publishing a study of great interest to my family and I.  A couple of years ago, I was contacted by a resident at Yale who was studying the genetic drivers of central neurocytoma.  I donated a blood sample and a piece of my tumor was obtained by the lab to understand the cause of this mutation.  The Chair of Neurosurgery at Yale is overseeing this study and shared this status update with me.  I plan to meet with him and the resident working on this study to learn more about their findings before the paper is published and I will share these updates at a later date, as well as the resident’s thesis.  What was told to us, and which comes as no surprise to any of us, is that this tumor type is vastly different from any other tumor and does not share many commonalities.

Life is unpredictable.  This is not even something you can conjure up in a dream, but if you had, and told me it would happen to me, I would have said “no way”.  Yet, it did happen and I survived and because of it, I am a better person.  I have a new outlook on life and a new normal.

That double vision nine years ago – it all makes perfect sense now.

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.

We Will Rock You!

It’s that time of year again!  Playing for the Cure: Brainstormin’ is less than 100 days away!  Hopefully you have it marked on your calendar, but just in case, save the date for September 15, 2017 at Stony Creek Brewery in Branford, CT.

Last year was a tremendous success, thanks to all of you, and we are hoping to build our accomplishments.  We are excited to be returning to the Creek and I hope all of my readers will join us again.  This will be our fourth year hosting this fundraiser, and I am hopeful for another breakthrough year and to continue helping Yale by bringing a smile to their face, just as they did while delivering the news to me this past May.

Four years ago, when my family began this fundraiser, who could have thought that an event to raise funds for brain tumors would turn into a full blown celebration.  We have you to thank for that – for helping to turn a somber topic into a night of hope, fun, love and laughs.  So without further ado, the details to date…

Back by popular demand is the CT-based band, Wise Old Moon, featuring our own Stephen Cusano on the drums.   We’re also excited to announce our emcee for the evening: the River’s 105.9 Renee DeNino!  There will also be a great lineup of prizes and auction items, and of course, thanks to Al Mac Motors II, we’ll be raffling off a 50cc street scooter again this year.  This could be your year!

As a third party fundraiser for the Yale School of Medicine, and in particular the Yale Brain Tumor Center, we hope you will support us.  A special thank you to our sponsors to date: ShelfSpace Marketing, LLC; Carla’s Pasta; Dental Associates of North Haven; Arnold’s Jewelers; T’s Alterations; Beirne Wealth Consulting; Blum Shapiro; Henry, Raymond & Thompson; Bank of Montreal; People’s Bank; Stew Leonard’s; Sardilli Produce; and Stop & Shop.

There is still time to sponsor and help us in our quest to raise money for the doctors and researchers at Yale where I  was treated and blessed with a renewed gift of life.

With each passing day, all of us continue to be affected by another brain tumor diagnosis.  With your help, we will assist doctors, researchers and scientists in their important work as they develop the cure to brain tumors.  Just last week, along with my peers at the CT Brain Tumor Alliance, we visited the Yale Brain Tumor Center for a tour, to visit the OR and the lab and hear about their research, and it is impressive.  I learned about the preliminary findings of the central neurocytoma project one of the PhD candidates is currently working on for his thesis, and I cannot wait to hear his final findings and share them with you.

Yale is fully committed to the patient and family, but they need our help.

Please visit http://www.cusanosagainstbraintumors.com for further information.  If you have joined us during the past three years, you know this will be a night you do not want to miss.

I look forward to seeing you on September 15th!

It might seem crazy what I’m about to say…

…but my tumor has made me a better person.

The exciting news this week continues.  In the past week, I learned that my MRI was clear and my brain is tumor free, and this past Friday night, the Connecticut Brain Tumor Alliance celebrated its tenth anniversary and also brought me some exciting news that I can now share with you.

The news here will be short and sweet as the video below says it all:

Thank you, CTBTA, for the kind introduction and for entrusting me to lead this organization and take us to the next level.  I am eager and excited to start this next chapter in my life and to continue bettering the lives of those afflicted with this disease, and as our mission statement states: “to be the resource for brain tumor patients and caregivers in Connecticut and the driving force in making Connecticut a center of excellence for patient care, brain tumor treatment, and research for the cure.”

Here’s to much success in the days and years ahead!  I can, “because I’m happy.”

Victorious

“Adversity.  We cannot direct the wind, but we can adjust the sails.”

After 9 years of making adjustments and coping with bad news that seemed as though it would never end, today, I am victorious.

I spent the morning at Yale for an MRI.  As I laid in the noisy tube, I reflected on the past nine years and thought about what my life would be like if the scan was clear and the tumor truly was gone for good.  For nearly one-third of my life, I have made trips to Yale for surgeries, appointments, having staples removed, and MRI’s that ranged from 3 months to one year.  Going in today, and as I laid there humming to the tapping noises emanating from the machine, I knew there was the distinct possibility that this life experience could be a thing of the past after my appointment with my doctor.  But I take nothing for granted these days, including Ashley, my best friend and the one who has been there with me every step of the day since day one, when I called her after receiving this horrifying diagnosis.

Together, we stalled in the cafeteria until my appointment. Soon after, we went up to the consultation room, he walked in and delivered the news…

“Your brain looks pristine!  Everything looks great!”  He was pretty confident after the last scan that this would be the case and reminded me that he was pretty aggressive during the last surgery, so he was not entirely surprised.  I thought I was dreaming, albeit a happy dream.  Logically, the question “What should our plan be going forward?” was presented.  After a brief discussion, it was decided that I do not need another MRI for 2 YEARS.  Yes, you read that correctly!  If I ever need anything though, I’ll know where to find him.

I have not fully digested this news yet, and it has not quite sunk in.  Fortunately, this chapter of my life appears to have drawn to a close – and I don’t say this lightly. This battle has not been mine
 to bear alone, but that of my family as well – and without all of their support, I would not be here, writing to you.  They have played such an instrumental part in my recovery and never once stopped believing in me, nor allowed me to give up on myself or dreams.

I look forward to many more years of health and sharing my stories of hope, courage and inspiration with each of you.

Cheers!
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