Tag Archives: adversity

You Get What You Give

Are my eyes deceiving me, or are we really midway through August?  This means I’ve been on the job for a month already, and if the first month as Executive Director has taught me anything, it is that this disease is more prevalent and devastating than I think I ever could have imagined.

While fundraising and relationship building is the fun part of the job, I spend a large portion of my time meeting with the various hospitals and talking with patients and caregivers in need of support, and that is the most rewarding.  As I said when I first began this blog in 2013, I wanted to share my experience to not only meet fellow brain tumor survivors, but to be a source of hope for those who are going through this today.  I have even more admiration for our first Executive Director as I knew the job and duties covered an array of demanding and time-constraining tasks, but every day truly brings something different.

The CTBTA is proud to host the Gray Ribbon Club, a support group for patients and caregivers to meet with us to share our journeys of this disease.  We are not doctors and we are not psychologists.  But we, at the CTBTA, have all lived this disease and turned it into a positive and we want to share that experience.  Our meetings are not held in a sterile, cold hospital, but rather in an inviting setting, such as a coffee shop.  During our meeting last week, tears of both sadness and joy were shed, and nobody should feel wrong or bad about doing that.  I am overjoyed by the progress of our participants.  Witnessing the continued improvement in one particular attendee’s speech and word-finding skills causes the hairs on the back of my neck to rise.  Yet, with each celebratory round of applause, there are those raw moments where we share those dark and scary thoughts that nobody likes to talk about, but in this group, we have all been there.  As another participant shared, this is a daily battle and we need to find the joy in every day and the little things in life.  To this relentless battler – we’re here for you and you should never be afraid to let your guard down amongst us.

In addition to the Gray Ribbon Club, I have enjoyed building a friendship with one particular couple over the past month.  As young, thriving adults, their world was turned upside down when they received the diagnosis.  By a stroke of luck, we first met at a conference in June and exchanged contact information.  Later that month, I was hired in this capacity and we’ve been in constant contact since.  On two separate occasions, we met to simply talk and hopefully, allow them to forget about this hell they’ve been in even for a moment.  This family is tough and they taught me a lesson – “that there is nobody or anything in this world that can or will bring me down.”  You think you had a rough day?  Talk about resilience.

When the phone rings or the email notification chimes, I am there to respond and triage the issue, if need be.  Things that we all too often take for granted – the privilege to drive and get around; the opportunity to work and provide food for your family; our personalities and behavior, etc.  Each journey is different and with the help of our Board, the CTBTA is able to assist and through our patient assistance funds set up through the hospitals, we pride ourselves in offering hope to those in need.

For whatever tomorrow will bring, one thing is for certain – I will go home feeling a sense of pride in helping and working towards our ultimate goal of making Connecticut a center of excellence in brain tumor care.   I really couldn’t ask for anything more.

Kind and Generous

Growing up, I always enjoyed puzzles, despite my short attention span, growing frustrated as I tried to put them together.  As I sit here and write this, the irony sets in as I now view my life as one giant puzzle and slowly but surely, a complete picture is beginning to take shape.

I have my health, happiness and career pretty well set.  There’s a couple of other parts that are still coming together, but I know that’ll be only a matter of time.

As I’ve alluded to a few times, following my surgery in 2015, I was contacted by a resident at Yale who was undertaking a research project to better understand the underlying genetic alterations that cause neurocytoma.  The research lab obtained a portion of my tumor and I agreed to donate a blood sample to allow them to analyze my DNA to look for any genetic markers.

For everyone involved, we all wanted answers on this particular tumor and to immerse ourselves in knowledge about its origins, genetic markers and hopefully, how to treat it at an early stage.

A neurocytoma is a very, very rare tumor, as evidenced by the literature, or the lack thereof of this tumor type.  As such, finding an abundance of these tumors in Connecticut, or across the country, was difficult.

At the outset of the origination of The Cusano Family Brain Tumor Fund, funds were used as seed funding to help propel research efforts forward to an effective treatment of any type of brain tumor.  This past fall, when my family and I made our annual visit to Yale to present the net proceeds for 2017, a proposal was made to us that a portion of the funding be used to complete the study on neurocytoma, which my family and I emphatically agreed to.  Through the use of the funds raised through Brainstormin‘, additional samples would be obtained from around the world to allow researchers to continue to test their hypothesis.

Fast forward to June 18, 2018.  With my family, friends and sponsors at my side, we spent the day at Yale to hear the results of Phase One of this project and tour the research lab of Dr. Murat Gunel.  The day was surreal, as it was such a satisfying moment for all of us to realize the impact our dollars have made and the lives we hope to affect in the future.  It is our collective hope that no other family has to endure what we did and I am beyond thankful to our donors for their support, as well as the doctors and researchers at Yale for their dedication and efforts on this project.  “For your kindness, I’m in debt to you and I never could have come this far without you.”

I invite you to enjoy some photos and the abstract of the study prepared by the Gunel Lab, which you can hear more about on September 14th!

 

With gracious support from the Cusano Family Brain Tumor Fund, the Gunel Lab at Yale University, has begun to comprehensively characterize the genomic features of Neurocytoma, a rare type of brain tumor, that has long been poorly understood.  In addition to the Yale School of Medicine, a large cohort of tumor samples has been collected from other international collaborators, including the University of Bonn Medical School (Germany), University Hospital of Cologne (Germany), Acibadem University School of Medicine (Turkey), Bahcesehir University (Turkey), Pittsburgh University Medical Center, University of California, and the Canada Brain Tumor Repository.  Using unbiased molecular approaches, the Gunel Lab aims to understand the underlying genomic events driving tumorigenesis (formation) in these tumors.  Ultimately, the hope is that these findings will lead to the development of targeted, personalized treatment for Neurocytoma, leading to improved survival and quality of life for these patients.

To this end, the Gunel Lab has used complementary genomic experiments and bioinformatics approaches on a subset of collected samples.  With completion of the first round of experiments, they have successfully identified preliminary clues about the molecular processes driving and causing formation of these tumors.  A second phase of experiments to further understand these mechanisms is planned, with the hope of sharing their findings with the scientific community to facilitate the development of targeted treatments for this disease.  The Gunel Lab is grateful for the generous support from the Cusano Family Brain Tumor Fund, and their supporters, to continue and complete this important work for patients with Neurocytoma.

With your help, we are on the precipice of something great and I am beyond grateful and humbled by every single donor and company that has supported us year after year.  Let’s help the staff at Yale get to the bottom of this by advancing brain tumor research in an effort to ultimately find the cure.

Celebrate Good Times, Come On!

Do you remember what you were doing exactly ten years ago, July 2, 2008?  I do.

It was 8:00a.m. and I was awake and alert, greeted by the surgical team, nurses, anesthesiologists and clinicians, as well as my family.  The day before, I learned that the cause of my double vision was a massive tumor sitting in the ventricles of my brain, complicated by hydrocephalus requiring surgery immediately.  As the preparation wrapped up, the clock turned to just about 9:00 and my family and I said our emotional goodbyes as I was rolled into the OR, but I remained confident.  When I would wake up, my life would change forever.  But how?

Admittedly, I never thought I’d say this, but this has been the best roller coaster ride I’ve ever been on.  Reflecting on the past decade, I’ve learned a lot about myself, but also about faith, perseverance and adversity.  In the darkest of times, I felt alone, scared and defeated – wondering when my life would take a turn for the better.

Now, exactly ten years later, I am turning to a new chapter in life as I say goodbye to my colleagues at the United Way and embark on the journey at the helm of the CT Brain Tumor Alliance, Inc. as the Executive Director.

More than ever, it is clear that this path happened for a reason and I am so grateful for my newfound appreciation for life and I live every day to the fullest.  So, for today, I would like to simply say “thank you” to everyone who has played a part of my life these past ten years.

Mom and Dad; Jackie, Wayne and Stephen; Ashley; my extended family and friends; my partners in this quest to find the cure; my friends and colleagues at the CTBTA; and last but not least, Dr. Piepmeier, my nurses, clinicians and therapists – THANK YOU.  Without each of you, I’d be lost at sea.

I am eager and excited to begin this journey to make Connecticut a center of excellence in brain tumor care.  I am honored and humbled, and look forward to working with the Board in my new role, deepening relationships, as well as building new ones, assisting patients and families as they adjust the sails, as well as supporting the endeavors that will be undertaken to make a brain tumor diagnosis less scary and ultimately, help find the cure.

For the past ten years, I have searched for the meaning behind all of this, and I am excited for this new beginning.  First things first though, a trip to Newport and Bristol, the place where this adventure began.

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!