Tag Archives: support

A Bottle Of White, A Bottle of Red, Perhaps A Bottle Of Rosé Instead?

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I’ve talked a lot about the value of support groups and the impact that friends can have on your recovery along the way, but what I have yet to do, until now, is to provide some insight on my new group of friends and support – the people that make up the Connecticut Brain Tumor Alliance (CTBTA).logoAs some background, the CTBTA was founded in 2006 as a 501(c)(3) non-profit organization.  The organization has raised over $1.5 million for brain tumor research, “Patient Assistance Funds” for families in financial need and specialized medical equipment for improvement treatments.

As a non-profit organization, the CTBTA is dedicated to offering support and compassion to those affected by brain tumors.  Each member of the Board has a very personal connection to brain tumors as we are all survivors or caregivers.  As a group, our mission is to “to raise awareness of brain tumors, provide hope and support for others affected by brain tumors and raise money to support and advocate for cutting-edge research for better treatments and a cure.

Proudly, I am one of 13 Board members and together we collaborate to better the lives of those afflicted with a brain tumor.  As the new guy in the organization, I cannot profess that I know everything there is to know, but I have witnessed the dedication of every board member in their efforts to hold events designed to promote awareness and raise funds to research the cure.  And as a non-profit, we work to raise money and donate proceeds raised during  our events in support of various organizations with one goal in mind – to find the cure.  The CTBTA has proudly supported various entities including the Yale Brain Tumor Center, Hartford Hospital, Saint Francis Hospital and Medical Center, the Connecticut Children’s Medical Center, Voices Against Brain Cancer and Weill Cornell Medical College.  What an honor to be a part of something so rewarding.

Though the diagnosis of a brain tumor or brain cancer is certainly scary, as an organization, we certainly know how to make it fun.  Throughout the course of the year, the CTBTA holds numerous events including a golf tournament, a trivia challenge, the Path of Hope (a 5K walk held at Hammonassett Beach State Park), Laughter on the Brain and the Wines of March to be held on March 14th from 7:00-10:00pm at the Mark Twain House.  The link includes all the details that you need to know, but to wet your appetite, Cassidy Hill Vineyard of Coventry is providing the wine and Shebeen Brewing Company of Wolcott is providing the beer!

We do so many great things, but what makes the CTBTA stand out in the world of non-profits is our personal connection to the cause and commitment to bettering the lives of those in need.

You can learn more about our organization at http://www.ctbta.org/.

Let The Music Do The Talking

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With everything now behind me, I can now look forward to everything else in store for 2015.  And today, I wish to share with you the early details for our second annual Playing for the Cure: Brainstormin’ benefit concert for brain tumor research.

My mission and goal is simple – I want to spread the word on brain tumors to educate with the hope that my story gives hope to those who are awaiting treatment or currently recovering.  I hope that through this blog, our concert, through The Cusano Family Fund to Benefit Brain Tumor Research (a non-profit corporation which I am working to establish for the benefit of the Yale Brain Tumor Center), and through my work with the CTBTA, awareness will be brought to this very important cause and money will be raised to assist doctors and researchers in finding the cure.

So, mark your calendars for Saturday, September 19th!  My family and I are pleased that The Ballroom at the OuterSpace in Hamden, CT will again be hosting the event and hope to surpass what we did last year.  We hope that you will come enjoy the music of Broca’s Area and other great acts with one common goal in mind: raising money to aid in finding the cure.  Details regarding the event time are still being worked out and will be announced as soon as it is known.  Rest assured though that there will be great lineup of acts and of course, food, drinks and raffles.

My brother Stephen formed Broca’s Area with his classmates at the Hartt School of Music and they have some great things happening right now.  On March 26, 2015, there will be a CD release party at Black Eyed Sally’s in Hartford beginning at 9:00PM.  The album contains five original compositions, all of which I’ve had the privilege of hearing and each song is better than the previous.  

With you, together we are making a difference in the lives of those who are living with a brain tumor and the survivors.  But as a family, we wanted to do more.  So for every CD that Broca’s Area sells, a royalty will be paid to the CT Brain Tumor Alliance (the “CTBTA”).  The CTBTA’s mission is “to raise awareness of brain tumors, provide hope and support for others affected by brain tumors and raise money to support and advocate for cutting-edge research for better treatments and a cure.”  Please come to Black Eyed Sally’s to support the cause and help in this fight!

I am very pleased in witnessing how my family has rallied around my battle – for being able to take something so terrible and turning it into something positive.  Some people tell me that I am inspiration, but if not for my family and the care that I received along the way, none of this would be possible.

Thank You For Being A Friend

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“In sickness and in health.”  Little did I know, a year-and-a-half later, the impact that this phrase would have on my life.  As I headed back to work this morning, I was emotional – overcome with emotion that I had been nursed back to health and able to resume living my life as I had previously.   I am grateful beyond words for all of my caregivers, but especially Ashley.  Over the past month, you have shown me the true meaning of love and what marriage is all about and I could not ask for anything more.   Thank you for all of your support, guidance and encouragement – I love you!

“3 Soldiers Attacked with a Knife in France”, “100 Bodies Found in Police Station”, and “Taking Selfies Likely Caused Plane Crash”; three real-life news headlines from this evening.  If it bleeds, it leads and if you pay too much attention to the ever-present media, the world can seem like a dark and dangerous place.  In today’s world, it’s easy to fall prey to a negative outlook.

When Chris’ surgeon walked in the room to advise us that he would need yet another brain surgery, my heart sank.  While it could always be worse, my anxious self jumped to the worst possible headlines: “Chris Unable to Speak or Function After Brain Surgery” or  “Surgeon Finds Cancerous Tumor Cells After All”.  As humans, we try to remain positive when life throws obstacles in our way.  As caretakers for someone suffering from an illness, we attempt to remain strong, but it’s difficult to not feel defeated or consider the what-ifs.

Despite all the negativity, anxiousness and downright scares that Chris’ new surgery brought, one positive theme emerged: human kindness.  The minute people found out the news, I was overwhelmed with hugs and true concern in the eyes of family, friends and co-workers.  Dinners were prepared for us, visits were made, care packages and cards with inspiring quotes were sent.  photo 1(2)During the surgery, at my most vulnerable, I received countless messages sending love, encouragement and all the luck I could accept.  I was simply uplifted.

While I believe it is important to stay strong and tough on your own, it’s in others’ compassion that we find strength when we need it most.  As a person who needed to be someone else’s rock, it was you that helped me persevere.

photo 2(1)So thank you – all of you – for reminding me to ignore the headlines and to remember that good in the world truly does exist.

Ain’t Nothing Gonna Hold Me Down

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I waited in anticipation.  I warded off all of those negative thoughts running through my mind thinking it would result in something positive.  Finally, after a long day of sitting and waiting, the door opened and in he walked:

“You’re going to need an operation, Chris.”

I stood there speechless and in shock – how is this happening again?  Did he really just say that?  Haven’t I already been through enough?  Why me?

My MRI showed further growth of the spot we have been watching since day one in 2008 and which was radiated last year.  The tumor is the size of a grape and is sitting in the “front lateral horn” of the brain.  Thankfully, this is a benign tumor but is acting “atypically”.  The typical neurocytoma, once removed and blasted with high dosages of radiation dies off and never grows back.  In all of his years, my surgeon has never seen a leftover piece of neurocytoma like mine grow in size after radiation.  For whatever reason, likely because this is the story of my life, my tumor did not respond to the gamma knife surgery and is persistent.

In the blink of an eye, I went from being in good spirits and thinking of which restaurant Ashley and I would celebrate at, to looking at my calendar to determine when the surgery would be scheduled for.  An exact date has not yet been decided upon but it will be sometime in early January.  I’ll have to go down to Yale for my pre-op appointment and go through the rigors of surgery all over again.  As I sat there listening and absorbing it all, I thought about myself but also the effect this has on Ashley and my family.  I am not worried about what will happen in the operating room as I have the utmost and complete faith in my neurosurgeon and doctors.  I am not however looking forward to the process of being operated on again and the days/weeks needed to recover.  And for my family, I’m sure this is not easy.   But together, we will all get through this and have a happy remainder of 2015.

As I gather more information, I’ll update you.  But if you’re on the other side of this post, do me a favor and enjoy every moment of every day because we don’t know when our fortunes may change.  Enjoy this holiday season with family and friends and give thanks and blessings for the everyday gifts we have.

Like my family said to me, for a reason that we are all still searching for, I was given this cross to bear and someday/somehow, I will understand why.  And you know what, I’m okay with it.  I’m not going to stop living or let today’s news bring me down.  530e9c97ed7a3e96831b5a77bd3ca664

UPDATE:

My surgery has been scheduled for January 8th.  For the past few days and in the midst of enjoying the holiday season, I’ve been reviewing my employer’s short-term disability insurance policy to make sure everything can still be provided for.   Then, to top it all off, our company has changed health insurance once again and for the fourth time in four years.  Fortunately, my surgeon participates in the plan.   As if worrying about my health and the procedure isn’t enough, all of the other stresses that inevitably come along with it hit you like a bullet train…a topic for another day.  At least it’s almost Christmas and hopefully I’ll forget about all of this for a day.

Hey Pretty Lady Won’t You Give Me a Sign [Reprise]

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As I sat at my desk today, fleeting thoughts ran through my mind about what tomorrow will bring.  But then, I refocused myself and got back to the task at hand.  However, something interesting happened along the way.  Better yet, I’ll go out on a limb and say my family and I got a sign.

Do you remember this post?  Well, as luck would have it, it happened  again.

As I sat at my desk, my phone began to buzz.  “Another group message about Christmas cookies from Jackie?” I thought.  No, the constant buzzing concerned something far more important.  When I picked up my phone, there were messages and this picture from my dad:

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My dad shared with my family and I that when he returned to his office, this pretty lady was sitting on his wall, just waiting to be seen, to let him know that all would be well tomorrow.

If that’s not a sign, then I don’t know what is!

Everybody Hurts

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If you have been following my blog, you probably get the sense that I am an overall positive person who has overcome some pretty great adversity.   But life hasn’t always been so grand and happy for me.  During my first semester back to law school in 2009, I struggled emotionally and lived in fear of the unknown.

As I was back in Rhode Island, gone was the comfort of being surrounded by my family 24/7.  Gone was the comfort of knowing that Yale was five minutes from my house.  From January 2009 through May 2009, I was scared.  On top of the possible side effects and the new way I was living, I was constantly worried about all of the what-ifs.  Above all else – I had to find a way to be okay with “my new normal.”

Upon arriving back in Rhode Island, my friends offered their support and assistance with anything that I needed.  But what nobody could offer me during these times was the guidance and calming effect that was provided by my doctors, therapists and family.  I took a full course load, which in retrospect I probably should not have done, but I needed to prove to myself that all would be fine and live my usual life and resume my schedule.  What I neglected to realize was that I couldn’t just jump back in – things needed to be readjusted and put into perspective all over again.

Classes proved difficult.  I had trouble managing my time as the readings took a lot longer than they had previously; reading through the legal jargon just to understand the judge’s reasoning behind his/her decision took hours.  I struggled with taking notes about what I had read.  This became a major problem, as my final exam grade was contingent on what I could absorb and comprehend from these readings.  I struggled and wanted to just quit at times.  Nonetheless, I put a smile on my face and carried on.

What nobody knew is what a dark and difficult time this was for me. Even though I was so happy to be back in school working toward earning my degree, I was struggling and was spending more hours in my professors’ office hours each day to go over the materials instead of living the everyday 24 year-old life I was used to.  Was the neuropsychological testing correct – were my cognitive impairments permanent?  Was I going to fail out of law school?  As the semester came to a close, I panicked because finals were approaching and in law school, final grades are based upon one grade – your score on the final exam.

In addition to this stress, my personality was changing.  I was suddenly guarded about who I was as a person and as a law student and became insecure about my knowledge and skills.  When in class, I listened to my peers recite the case with ease and making it look like a walk in the park.  I grew irritable and frustrated with my abilities (or should I say, inabilities).  There were many moments of loneliness and a feeling of helplessness.  Then, there were moments of emptiness.

After a night out at a bar with my friends, we all returned to Ashley’s so the night would continue but I noticed that my friends were happy, loving life and seemingly without a worry in the world.  As I sat there watching, I began to reflect on what had happened to me and what I had been through six months prior.  The magnitude of emotions got to me and I went to an upstairs room, sat on the bed reflected and let my emotions pour out.  Fortunately, Ashley, being my rock and support system, immediately noticed and rushed upstairs behind me.  She did not say anything, nor did she need to.  She tried to be strong for me and to keep me encouraged but little did she know, I saw a tear rolling down her cheek.

My story has had so many ups and downs that are full of laughter, sorrow, inspiration and hope.  But I have never, until just recently, expressed the emotional toll it took.  I don’t know why, but recently I’ve felt the urge to share, in particular because I have been hearing of more and more people undergoing a hardship.  Dealing with a brain tumor, or any illness or disease for that matter is scary and your life gets turned upside down and nobody should have to face it alone.

So while I have shared a lot about the positives of my story, there have also been a lot of emotional times as well and for those of you who are undergoing something similar, you know what I mean.

The Path of Hope

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Today was the “1st Annual Path of Hope: A 5K Journey To Benefit The Connecticut Brain Tumor Alliance” at Hammonasset State Park. Despite my MRI results this past Friday,  the sun was shining, the air was brisk and the atmosphere was great and it was a reason to celebrate.  I felt so fortunate to be surrounded by my family, friends (both old and new) and to talk with other brain tumor survivors, patients and caregivers on this day.  When I see families like mine and hear of stories similar to what I went through, it gives me a sense of knowing that our everyday problems that we complain about are not so significant.  It was a great day and I am happy that I got involved with such a great organization.

I served on the Walk Committee and was asked to say a few words and offered the opportunity to play my song, if I wanted to.  I was honored and humbled by this offer and was very happy to share my story with others to serve as inspiration and hope for those undergoing this terrible diagnosis.

Fortunately, Ashley captured the moment on video and I am sharing it here.  Ironically however, my song was “interrupted” yet again.  Enjoy!

Roller Coaster Ride

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So the first Friday in October came and went – yes, results day.

Before I get to my results, I would like to congratulate all those who passed the Connecticut bar exam.  Enjoy this time and your day being sworn-in as a member of the bar!

As for me?  The day did not go as I would have scripted it to.  I was supposed to be rejoicing and celebrating with you.  Yet, for reasons unknown at this point in time, my fight shall continue on.

Quite simply, yesterday’s results were inconclusive.  In comparison to my scans taken in March, what appeared on yesterday’s MRI was noted as something to watch. Last December, when I went in for the gamma knife surgery, the area where treatment was being applied was clearly visible and clearly tumor.  The growth was blasted with a high dose of radiation and at my follow-up MRI this past March, my surgeon gave me a thumbs up; all signs pointed to the conclusion that the procedure had killed off the tumor cells and any remaining cells would soon wither away.

Yesterday, I had the chance to see for myself the three images – the MRI from last December, the MRI from March and then the MRI from yesterday.  He placed all three of them on the screen for us to see.  March compared to December was significantly smaller and indicative that the treatment was working.  The scans from yesterday showed that the treatment site was still the same size as in March – but with one notable difference.  Brightness.

Brightness on an MRI is indicative of tumor activity.  But brightness can also indicate “radiation necrosis”.  Radiation necrosis is an accumulation of dead tissue and dead cells killed off by the radiation.  My medical team was going to review the results with the radiologist for his opinion.  Aside from that however, I’ll continue to monitor myself for headaches, dizziness, forgetfulness, eyesight problems, vomiting and nausea.  Yet, because of the location of where the tumor originally was, I do not experience any of these symptoms nor have I ever until the very last-minute in 2008 at which time the tumor was likely 3-6 years old.

So where do I go from here?  I’ll wait some more.  I am being rescanned in December and we’ll again review those results and develop a plan if needed.  If it is radiation necrosis, there would be nothing that I need to do.  However, if results indicate that this is tumor activity, further treatment and even surgery could be an option.

This is the story of my life it seems.   But I am resilient and a fighter.  I have never complained or felt sorry for myself and have always maintained a smile on my face through it all and I will continue to do so.  For the next two months, I will do my best to not obsess over this, but being human, that is easier said than done.  However, thanks to great family and my medical staff, I’m in good hands and will once again come out on top.  Maybe I’ll even have my own swearing-in ceremony as a member of a survivor/relentless fighter association!

It’s A Beautiful Day

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Fall is my absolute favorite season.  Humidity gives way to crisp air, trees transform to an array of stunning colors and then there’s the food… enough said.  Aside from all that, fall serves as a subtle, beautiful reminder of the transient nature of life – all that lives eventually dies.

Lately, Chris and I have heard many stories of people suffering from brain tumors that haven’t fared as well as him.  Hearing these heartbreaking stories leads to such a heavy feeling of survivor’s guilt.  Why did Chris survive and other worthy, amazing people have not?  Was it divine intervention or just pure luck?  I’m not sure what I believe, but I often wonder if we are living our lives as we should considering the enormous gift we’ve been given.  Perhaps we should be experiencing every ounce of life we can – going on African safaris, skydiving, volunteering as much time as we can to those less fortunate.  Can the way we live our everyday, middle class America, 9 to 5 life ever be enough to say thank you for the gift of life?

The fact of the matter is I’ll never know why Chris survived and the alternative will likely forever haunt me.

In terms of survivor’s guilt though, I think I do have an answer.  While driving to work this morning, I opened the sunroof and commented to myself on how it was my favorite type of autumn day …and then it hit me.  We don’t need to win a Nobel Peace Prize or travel to some far away land to really live.  To do justice to those who haven’t survived, we just need to live it well – no matter what we’re doing.  So do me a favor today.  Take all of your everyday experiences and try to make it worth something.  Smile more.  Laugh until your belly hurts.  Really taste that morning coffee.  Do something nice for someone just because.   Life doesn’t have to be “big” to be wonderful and fulfilling.

Take joy in all the simple things for those who can’t.

Submitted by Ashley Cusano

Playing for the Cure, Brainstormin’ – A Success!

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I am pleased to announce that, last night at Playing for the Cure, Brainstormin’, we surpassed $10,000 in proceeds to be donated to the Yale Brain Tumor Center for research and treatments for brain tumors and brain cancer!! Thank you to everyone who came out last night and to everyone who gave donations, and to our corporate sponsors. Thank you Broca’s Area Daphne Lee Martin for providing a night filled with great music. However, the highlight of the night came from my surgeon, Dr. Piepmeier. Humbled and honored, and looking forward to our new partnership with Yale-New Haven Hospital: