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.

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

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

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.

Don’t Worry Be Happy

Triumphantly, I made my return to the office last week.  Yes, three-and-a-half weeks removed from brain surgery, I went in.  photo 1I was eager and motivated to do something – better yet, anything other than sit at home and channel surf.  I was well rested and feeling great and had recently received medical clearance from my doctors to return on a part-time basis for a couple of weeks.  But what would I feel like after a 20-hour work week when I had done literally nothing for the past four weeks?  Over time, the answer to this question became clear.

Initially, I was overcome by emotion but also very excited to see my coworkers and peers.  Making the rounds and saying hello to everyone, I felt like an exhibit – “where are your stitches?” and “what are you doing here?” were the common questions.  Perhaps this is my “new normal” but unlike others, I expected to be back that quickly.  My surgeon had predicted I would be out for 3-4 weeks at most and I know how my body recovers and heals.  So when I woke up after surgery with no unexpected side effects, I fully expected to be back to work in no time at all.  Of course though, in a matter of three-and-a-half weeks, over 600 emails had piled up and I needed to sort through them.

Per my doctor’s orders, I was to work no more than 4 hours per day, even though I think I could have done more if I wanted to.  Nonetheless though, I went in and picked up my job tasks right where they had left off before my leave of absence.  Two months before I left, I assumed a new position – Associate Administrator – Marketing and External Affairs.  I decided it was time to step away from my pursuit of the practice of law and instead refocus my efforts in a position to which I felt I could make a career.

I’ll be the first to admit – nobody in the office is more upset than I that I am not an attorney after working so hard for it and putting in the time – but, I came to the realization a while ago that right now, being an attorney is not in the cards for me and just simply not meant to be.  Sure, I was disappointed and frustrated.  I took out student loans equivalent to a second mortgage on law school and was in desperate need of a way in which to repay them.  Furthermore, I had devoted time and money into passing the bar exam three times.  Each time, it was the same result and same old adage – close, but no cigar.  I needed a new goal – something tangible which I knew I could achieve and excel in.  Alas, this opportunity presented itself and I jumped.  I understand the inherent risks in that I am now on a different path than my peers who graduated at or near the same time that I did.  I will watch them as they grow through the ranks of a law firm and make more money than I ever may.  However, at the end of the day, one word assured me of this decision – happiness.

When I think about how I got to this point in my life, I think back on a number of things, namely those who doubted my ability to pass the bar exam due to my cognitive impairments: the neuropsychological evaluator; my law school professors who admired my courage for carrying on; my surgeon’s own admission; my law school dean; my bar exam tutor.  Admittedly, they were all correct.  Yet, my family never once doubted any of my decisions as I moved forward in my life.  Rather, they continually support my daily decisions.  For this, I am forever grateful.

I can’t worry about my future and what successes I’ll find.  While I may not have reached my goal of becoming an attorney, I know success will come because I’ve survived the toughest obstacle of all.  The bar exam may have beaten me down, but my tumor showed me I have what it takes; tenacity, perseverance and the strength to carry on.  I must keep plugging away, fighting adversity and rising to the occasion.  It’s true when they tell you that life isn’t easy.  Take it from me – it’s not.  As the song lyrics go: “In every life we have some trouble.  When you worry you make it double.  Don’t worry, be happy. “

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