Tag Archives: CTBTA

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’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.

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.”

I’m Living My Life Like Its Golden

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

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.