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!

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!

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