Live For Tomorrow, Be Happy Today, Laugh All Your Sorrows Away

Growing up, I always heard the saying “laughter is the best medicine” but thought to myself, “nah, that is just a saying.”   Or is it? This past Tuesday, the CT Brain Tumor Alliance proved that it’s one hundred percent true.  The CTBTA’s annual “Laughter on the Brain” was held at Infinity Hall in Hartford.  The goal of the event was simple – to raise awareness, money and support for brain tumor patients and quite simply – for everyone to have some fun.  That goal was met instantly.

With a great vibe from Broca’s Area to kick off the night, followed by the opening remarks, a few words from yours unnamedtruly, and an awesome live auction, the night was off to a great start.  But on my mind, and I would venture to guess almost everyone else’s in the room, was the topic of brain tumors and brain cancer.  It is hard not to think about the devastation that can occur from the diagnosis, but the CT Brain Tumor Alliance did another wonderful job in making the best of a dark situation.  Once the comedians took the stage, all was forgotten – at least for the time they took the stage.

The comedians featured included Eric Tartagilione, Dr. Jay Sutay and Kevin Lee.  Maybe it’s my new-found obsession with the medical profession and doctors, but my favorite of the night was Dr. Sutay.  Donning a Scooby Doo tie, this guy was absolutely hysterical.  As if it wasn’t funny enough that he is legitimately a practicing doctor by day, but his jokes were absolutely phenomenal.  He had people in stitches!  Get it?!?

Instinctively, this made a light bulb go off – wouldn’t it be great for hospitals to set up comedy shows for patients?  It does not have to be a professional comedian or anything elaborate, but simply, a way to make patients and caregivers laugh. Hey, there’s even some science behind it.  I think back to the day during my recovery when I went to see Tropic Thunder with my sister and brother-in-law in the theaters.  Despite having little ability to verbally communicate, I screamed with laughter, which in turn gave the two of them a good laugh and some comfort that I was still in there.  The movie was so bad that it was hysterical to me (or as my wife tells me, I have a terrible sense of humor), but whatever it was – it was exactly what I needed – a laugh to make me feel human again.

In talking to current patients in treatment after the event, they shared in the feeling that it was joyous, fun and festive occasion. Hopefully, they too were able to forget about their current situation for a little while.  In particular, I must tell you about Aisha. I recently met Aisha, who not only grew up in the same town that I did, but also the only other person I have met with a central neurocytoma (a troubling coincidence). Our stories are very similar, as our outlooks.  However, I don’t think I’ve ever met a person with such a sunny disposition while facing a trauma like this.  Not only is she full of positivity, but she is by far one of the funniest people I’ve ever met and is quick to make a joke about her situation.  She’s simply fantastic.

I think a good laugh and not taking yourself so seriously does almost every patient well.  We all need some relief and a way to take our minds off of an unfortunate situation that we may be facing.

In a perfect world, there would be no charge, no pill to swallow, nor poke of a needle.  Rather, everyone would be welcome to attend a comedy show, share some laughs and forget about the pain and suffering for a while.  After all, laughter truly is the best medicine.

April Showers Bring May Flowers

I know I’m a few days late, but it’s May and May is Brain Tumor Awareness Month!  For the patients, survivors, caregivers, friends and families, this is our month to be heard, raise awareness and bring a much needed voice to the brain tumor community.

There are some great campaigns taking place during the month and lots of awesome people who are dedicated to raising awareness.  Maybe you’ve heard of various sporting teams wearing “grey” uniforms to show their pride, or perhaps have been involved in or seen flyers for walks being held this month?  These are both wonderful opportunities for the much deserved and appreciated recognition.  I’ve also seen friends on social media posting pictures of themselves in a different grey outfit each day – very cool!  It’s these simple things that bring a smile to my face to know that this cause is so well cared for and there are many individuals and businesses out there trying to make a difference.  Even my dog got in on the party showing off his #beaniesforbraincancer! IMG_1629

All of this got me thinking – what can I do to show my pride and make a statement?  And then it came to me.

As I was sitting in the chair getting my haircut with my barber doing his final touches, I told him it looked good, but asked him if he would buzz the top too.  “Are you sure?” he asked.  I replied, “yes, I’m positive.  It’s brain tumor awareness month and this is my way of showing pride and support.”  As he began buzzing it, a voice piped up from another shaved-head person: “Sorry, but why did you decide to buzz it after getting rid of the old style?”  I explained to him, and the rest of people waiting for the barber that May is brain tumor awareness month and as a survivor, I wanted to do something to show my pride and support.  Looking in the mirror, I saw nods of approval and smiles, and then I was asked whether I would consider one of the barber’s already-shaved head as support of my effort.  I have no shame and I’m not embarrassed to show the world my scars – my battle wounds.  DSC_0402Fortunately, losing my hair is one thing I’ll likely never have to worry about – thanks Mom.

So what are you willing to do for the rest of this month to show your support?  You can wear the grey CTBTA bracelet or purchase Broca’s Area CD to help raise money for the CTBTA.  There are so many ways to get involved and help out, many of which would not require you to leave your couch.  Come on and join the party, you know you want to!

It’s A Beautiful Day

I was sitting at my desk, my mind wandering and racing.  I needed to get out so I took a walk to Starbucks for an afternoon pick-me-up.  When I returned to my office, I looked at my email and there was an email from my doctor – the results were in.

For the first time since 2008, I saw the words I’ve long waited to hear: “There is no more tumor, all is good!”

A deep sigh of relief and a weight off of my shoulders.  This beast has tried and tried to bring me down, but I am far too resilient to allow that.  With an amazing cast of doctors caring for me and my wonderfully supportive family and friends, I can finally say “I am tumor free” since my initial diagnosis in 2008.

This news is just the tip of the iceberg though.  You see, I knew this day would come but I just did not know when.  What I did know however, was that my passion and excitement for this cause was just getting started and today, I had the privilege of being a part of something great…

Stay tuned.  Until then, enjoy a beer or your favorite cocktail tonight – it’s  on me.

 

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Wounds Heal, But Scars Still Remain The Same

As I’m writing this, a flurry of emotions are running through my mind: eager, nervous, anxious, apprehensive, hopeful.  I have my three month MRI next week, my first since having the tumor removed.  And for the past six and a half years, I feel like I have constantly written “in three months, I’ll go back to Yale for my follow up MRI.”

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The aftermath of brain surgery.  January 13, 2015.

Funny thing is, as I wrote that, it finally sunk in that this is my life – while the scars have healed and my hair has grown back, I will endure continuous follow up and MRIs to ensure this beast doesn’t grow back.  Yes, the emotional scar is still there.  I’m a strong person, but I’ve been feeling like the past 6+ years are starting to catch up with me.

Yet, I am still hopeful that now I can move forward and put this chapter of the story in my past.  Hopefully, as long as my MRIs are clear, they will continue to be spread out and the visits to Yale will become less frequent.  I will need to continue monitoring myself for recurrence and the functionality of the shunt indefinitely.

When the topic of recurrence comes up, I wish I had a better response for people, I honestly do.  It is a scary thought that I might have to go through this again someday.   An even scarier thought, is this genetic?  Will my children someday be at risk for developing a brain tumor?  Will the reason that people develop brain tumors in the first place ever be discovered?  I would like to think that, in my lifetime, the answer to this question will be yes, but I cannot be certain.  All of these unknowns lead me to thinking and I find myself wondering about all of the “what ifs” that may someday present themselves and who will answer those questions for me.

A couple of weeks ago, the clinical care coordinator at the Yale Brain Tumor Center announced her retirement – a heartbreaking and total loss.  I felt the void that very moment.  Ever since July 1, 2008, her and I have developed a great relationship.  She was my main source of support while I was in the hospital and during my follow-up appointments.  The times that I had a seizure in my apartment, she was the first call I made.  This got me thinking… what will happen when my surgeon decides to call it quits?  I will need to be restrained by someone because I’ll be down at the hospital pleading with him and begging him not to go.  This man saved my life and I will find it hard to trust any other hands in my brain. When he most recently told me he wanted to operate, it did not take me long to make that decision.  The idea of surgery, with him, is an easy one.

Nevertheless, this whole entire process has been nerve wracking and I cannot even begin to imagine it with another surgeon.  I hope and pray that the tumor is gone for good and that no further surgery will be necessary.

Reality is, no matter how hard I/we, the brain tumor community, tries not to think about all of these questions and dwell on the past, it is easier said than done.  The questions are prevalent and all around us.  No matter where I turn, I hear about brain tumors and brain cancer and it’s a scary thought – but I am a better person because of this experience.  This life experience has taught me about how to live and what truly matters.

So when someone asks me, “now what?” my answer is, to be honest, “I don’t know”.  Nothing seems certain at the moment.  I will remain optimistic though, that’s a given.  While uncertainty seems obvious for someone like me, I remind myself that every moment is uncertain for everyone, regardless of his or her circumstances.

We All Need Somebody To Lean On

Tomorrow is the beginning of a new chapter.  Along with other brain tumor survivors, caregivers and the CTBTA, we are having our first Patient and Caregiver Outreach meeting.  This is my moment, my opportunity to give back and aid those in need.

As I was browsing the web earlier, I read about Ethan Couch, an 11-year old who had a dream.  As some background, when he was 9 years old, Ethan’s mother began to notice irregular behaviors from her son such as trembling, having sore feet, poor balance and struggling to put on his pants and tie his shoes.  Tests showed that Ethan had a brain tumor which was blocking his body’s ability to circulate spinal fluid, causing hydrocephalus.  I know this feeling all too well and my heart sank for Ethan.  Unfortunately, his tumor was inoperable and doctors are unable to do anything other than monitor him on a regular basis.  But Ethan had a wish – to attend the Masters this week.masters-flag

This story is truly heartwarming and special and I hope you all can find the time to read it: http://espn.go.com/golf/masters15/story/_/id/12638216/masters-wish-comes-true

Streelman got it right.  Like him, I want to open the door for someone else and give them the hope and fight they need.  Now is my opportunity for giving back and using what happened to me in my quest to help others.

Listen To The Music

Raising awareness and spreading hope – these are the two things that, as a brain tumor survivor, I hope to accomplish these days.  As I wrote about in a previous entry, Broca’s Area, a fusion/hip-hop band had their CD release party this past Thursday.  A packed house came to watch the band debut their album titled Clarity.  The night was full of great music (take a listen to Space, one of their original singles), an amazing live drawing 10647130_812098832172320_2219110831019678840_ncapturing the night’s vibe and a laser show.  It was a wild Thursday night (for me, anyway). Despite all the obvious revelry, the intangibles stood out to me most.

Over the years, it has become abundantly clear to me that my story is not only mine; I have shared every step of this journey with my family.  It was them who watched me spend weeks and months in the neuro-ICU and rehab.  It was them who nursed me back to health.  And it is still them who support me through every moment.  Words cannot express the pride I feel when I see how everyone has taken something so terrible and turned it into something positive.

When my brother Stephen came to me with the idea of donating a portion of CD sales to finding the cure and helping better the lives of those in need, I was honored and knew just where to turn.  One day in 2014, I was home exploring ways to connect with other brain tumor patients and advocates, when I happened upon the CTBTA website.  Within days of filling out a contact form, I was having coffee with the Executive Director and another Board member, sharing my story and ideas.  They welcomed me with open arms.  From that moment on, I have felt a renewed sense of purpose.

For me, the night was such a beautiful melding of my family who has been there from day one, friends and the family I’ve found in the CTBTA.  The pride I felt watching 11091202_812101065505430_9171527113053482358_nmy brother and his bandmates killing it on the stage was almost overwhelming – knowing how much work went it to this, not only for themselves, but for others is a true testament to how much we can accomplish. 11051865_812100148838855_6420674188541795924_nTo everyone who purchased a CD at Black Eyed Sally’s, or who purchased one previously or since then, we thank you!  To my new friends at Carla’s Pasta who have shown tremendous support and generosity, we thank you.  Because of all of you, finding effective treatments and the cure to brain tumors and brain cancer can someday be made possible.

Equally as exciting as watching the show was witnessing the spirit of my fellow survivors and caretakers.  As has been discussed over and over on this blog, a brain tumor diagnosis is devastating for the patient and caretakers.  But with strong spirits and perseverance, any obstacle can be overcome.  I send a big thank you to Susan, David, Tracey, Greg, Maria and Kim for being there with us on this special night.  Your enthusiasm and support are the reason that I volunteered and am now a board member of the CTBTA.  The passion that you have for this cause is unbelievable and inspiring.  Each of our stories is special and unique in their own way, but we are all connected by one common denominator.

For Stephen, music and this band were his clarity during a tough time.  For me, family and realizing what truly matters in life is my clarity and what gives me the drive to carry on and succeed day-to-day.  As I’ve explained before, music has also served as my clarity.  And as you may or may not have noticed, I write these posts based on music and songs.  So in case you missed it, mark your calendars for September 19th and join us for the Second Annual Give Back Music Festival: Brainstormin’ to benefit The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.  Let’s continue to focus on the good – let the music, laughs, and some cold beer bring some clarity to and hope for this devastating illness and those living through it.

Like A Bridge Over Troubled Water

Time and time again, we hear “your health is all you have in life and without it, you’re nothing.”  If you’re like me, you immediately think of your physical health.

Yet, perhaps often overlooked is the other side – a person’s psychological health.  The emphasis is rarely placed on mental well being, unfortunately.  Psychological ailments are typically met with criticism and stigmatization.  For fear of being labeled “crazy”, mental illness is hidden and pushed aside.  According to the most recent National Institute of Mental Health survey, 18.6% of the United States population is currently suffering from a mental, behavioral or emotional disorder.  Let us not forget that this number is likely skewed – how many people are truly admitting to experiencing a psychological disorder on a survey?   The prevalence of psychological disorders is staggering.

Ashley earned her bachelor’s degree in psychology so she continuously nags me about some psychological condition which she has claimed I have had since my first craniotomy.  The simple fact is that any surgery can be a traumatic experience.  In her view, and the view with which I now share, major brain surgery at 24 years old, followed by a near deadly infection, followed by months of rehabilitation with the cognitive ability of a 2nd grader due to hydrocephalus, radiation and then a recurrence has definitely caused me trauma.

Yes, I survived. Yes, I am tumor free, or at least I hope.  I have my health and life.  But as Ashley has reminded me over and over, I have never given myself a minute to mourn my loss.  And contrary to what I say (the ever-stubborn man response of “I’m fine”), perhaps there was a true loss.

In the span of less than 24 hours in 2008, I had an MRI, received the devastating news that I had a large tumor in my brain and was brought in for emergency surgery.  When my initial surgery and physical recovery was over, I immediately went back to work and then school.  There was no opportunity to process the news and mourn.  Ever since, I have spent the last 7 years of my life with a brain tumor on the back of his mind (no pun intended).  I lost the carefree days of my twenties. I lost the ability to complete law school with my peers and to pass the bar exam.  I take 3,000 milligrams of medicine per day to prevent seizures and face constant medical bills with rising costs in health insurance.  I’m only 31.

So while I am a happy and self-proclaimed blessed person, Ashley refuses to let me tell her “I’m fine” because as she tells me, she sure as hell would not be.  Yeah, I’ve had my hardships and have successfully dealt with them one by one, but when I put myself in her shoes, I can understand where she’s coming from.  She has witnessed the heartbreak when I didn’t find my name on the list of successful applicants on the bar exam list three times, the frustration in my eyes when I forget something I should not have and the aggravation that I grow fatigued easier now than I ever did before.

She has begged me to go and speak with a trained professional or support group to truly open up and express my feelings.  ptsd-brain-e1392825630316Those who know me, you know that I am stubborn and have not done so – at least not yet.  I credit my stubbornness for one good thing though, and that is beating my brain tumor.  Ashley has always maintained that I can talk to her about it if and when I am upset, but cautions me that I would benefit more from speaking with a trained professional or survivor’s group.  She is unsure she can ever truly understand what I went through and the internal struggles I face.  Whether she is right or not, I don’t know but I’m at least keeping the option open.

My new work with the Connecticut Brain Tumor Alliance has helped, though – there is no doubt in my mind, or Ashley’s.  She tells me she’s seen the way his eyes light up when I talk with other brain tumor survivors.  And it’s true.  While I love talking to her about everyday life, there is something special about talking with fellow brain tumor survivors for support and guidance.  It is the best therapy.

This week, I’m meeting with the Executive Director and a fellow brain tumor survivor to brainstorm about creating a patient-outreach platform where survivors can connect one-on-one with someone in need.  When I woke up in the hospital at 24 years of age, I was lost.  Just two months earlier, I had just completed my first year of law school and there I was, laying in a hospital bed trying to write my name and recite the alphabet.  My family was by my side and I am forever grateful, but it also would have been comforting to have someone who could share some insight with me.

I’ve come full circle – I have become the person that I needed seven years ago and hope I can now help someone else out there.  Nobody should have to go through this experience alone.  Everyone needs somebody to talk with and vent to, and I want to be that person.  I’m not a medical expert, but I have lived through this and am confident that I can be a great resource for those who are in a similar position to that which I was in.  I know it’s only a drop in the bucket, but I hope I can help level out the psychological versus physical health playing field.

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