Tag Archives: adversity

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.

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!

That Spirit of Christmas

img_3995Here we are yet again – visiting, decorating, shopping and wrapping, all while maintaining a work-life balance.  It wouldn’t be the Christmas season without a little bit of added stress – and Coddington chewing Santa.  Last December, I wrote about enjoying the moment and enjoying the holidays, and I have frequently preached the same idea.

Despite all of my own advice, I am one of the worst violators at times.  Sure, I can chalk it up to eight years of MRIs, surgeries and seizures, experiencing let down after let down in the pursuit of my career, but the reality is that I have failed to count my blessings.  Life could have went in a very different direction for me in a heartbeat, but for whatever the reason, that wasn’t the plan.  No one is expected to be the epitome of a carefree, happy person 24/7, but, as I am reminded by Ashley, I have a lot to be grateful for this holiday season and every day – maybe like my friend Ebenezer I’ve been visited by the Ghosts of Christmas past, present and future in my sleep last night, because today it has suddenly become so clear.  With my perceived troubles, it is easy for me to forget how well things turned out for me.

Life is not guaranteed and there is simply no time to be down in the dumps.  This Christmas season and the beginning of the year is a time to start taking the advice I constantly dole out to others.  I’m not looking back.

On Monday night before the Ravens and Patriots squared off, ESPN opened the broadcast with a story that hit home.  My social media news feed was subsequently filled with the story of an amazing fighter from here in Connecticut battling brain cancer.  I cried as I watched this video, as I was overcome by profound sadness for Logan and his family.  As a Giants fan – thank you Tom Brady for helping to make this fan’s wish come true and the doctors at CCMC for giving him his own “# 12.”  I am praying for Logan and his family during the days ahead.  http://www.espn.com/video/clip?id=18266035.

As I watched this story, I was reminded once again just how lucky I am.  This one got me.  I am determined to live the renewed lease on life that I was given.

Here I am, eight years removed from what could have been, but I cannot find happiness on a day-to-day basis, all for no good reason. No more though.  I am going to live, love, laugh and smile more.

Finish your shopping and wrapping.  Enjoy the company of family and friends.  But find time to laugh and smile more  – not just around Christmastime, but all year long.  As the late, great Ray Charles said:

All the kin folk gather round
The lovely Christmas tree
Hearts are glowing full of joy
Sense the gifts that we’re giving
And the love that we’re living
Why can’t it remain
Oh all through the year
Each day the same
that’s what I wanna hear
I’ll tell ya
It’s truly amazin’
That spirit of Christmas

Walk This Way

One step at a time…

Last week, over 700 brain tumor patients, survivors, caregivers, family, friends and doctors walked and ran in the Path of Hope, a 5K to benefit the CTBTA.  As with all events, there were obstacles to overcome but that did not stop us.  The new venue worked perfectly and I heard many great compliments.  Additionally, we were faced with another event taking place on the same day and at the same location, but this too did not make an iota of a difference to our dedicated group of volunteers who adjusted to each punch thrown.  I saw determination and a desire to make this event just as great, if not better, than the previous two years.   Proudly, we can say, that goal was accomplished.

We had an impassioned speech from our President Emeritus and a beautiful rendition of the National Anthem.  New this year was a true 5K timed run to give those who wanted that experience and it was a success.  The walkers were located within the confines of the village and as each team came around the turn, I saw nothing but smiles, belief and hope.

The most incredible part of the entire of the day was witnessing the brain tumor community come together, and it is truly awesome to witness.  Never could I have imagined that there would be this community, let alone people who wanted to come together and celebrate their journey in what they have overcome or are currently facing.  Whether it was meeting Elli Haskes, a fifteen year old student whose mother passed away from brain cancer when she was five and who set up a table to collect items to create care packages for children whose parents have been diagnosed with a brain tumor, or Steve, an inspirational survivor whom would never let on that anything was wrong, and his caregiver Wendy, who radiates with positivity.  And to greet all of the patients and survivors, there was Supercow, img_1223the very animal I named in the hospital when my parents asked me who my dog was.  The handshakes, hugs and tears we exchanged are moments I will not forget and are the reason that I do this.  Thank you all for being there.

When I think about all the time and work that went into the event by everyone involved, it was all worth it as  I saw the joy that it brought to everyone.  The day was about raising awareness of brain tumors and doing our part to help find the cure.  It sounds odd, but there is truly something special when you have the chance to actually celebrate brain tumors with an amazing community of people whose lives have been affected by this awful disease.

Whether your tumor is malignant or benign, it is still a brain tumor and the effects are equally as devastating.  The best advice that I was given, and which I now give to you is simple.

Take it “one step at a time.”  There is not a day that does not go by where I do not think about it, or reflect upon how grateful I am, but to Ashley, my family, friends and all supporters – thank you for all you have done, and continue to do for me.  You have allowed me to take this and turn it into something great, and I am grateful.img_1452

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

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

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

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

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

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

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

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

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

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

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