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. “

Thank You For Being A Friend

“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.

If You’re Lost And Alone, Or You’re Sinking Like A Stone, Carry On

I am suffering from cabin fever.  Sitting home, recovering from a brain tumor is painful.  Literally and figuratively speaking.  Time seems to move at an unbearably slow pace and you find yourself reaching for painkillers throughout the day.  So, I decided to offer-up some tips and advice if you’re gearing up for surgery or are home recovering:

  1. Take it slow and easy – it takes a long time to feel better.  You’re probably thinking “Duh, no kidding.”  But if you’re like I was before my first surgery, you may not know what to expect and will find yourself afterwards asking “why me” and “how did this happen?” repeatedly.  Over time though, you will feel better and some days will be better than others.  Stay patient, stay hungry but do not try to push yourself.
  2. Your head will most definitely hurt.  Though the headaches and feelings of discomfort subside within a few days, you will feel as though your scalp is being pulled in every direction for weeks (or even months – so I hear).  This is normal and will get better with time, I swear.
  3. Speaking of your head and pain – take the prescriptions provided to you.  You’ll go home with prescriptions such as painkillers, steroids, acid reflux, not to be gross but digestion problems (thanks anesthesia!) and blood thinners.  Between your hospital stay and when you are discharged, you’ll be on more medications than you probably have ever been on but put your fears aside and take them as prescribed.
  4. Watch out Barry Bonds and Mark McGwire – I’m on steroids too.  Okay, so that’s an exaggeration.  The steroids you’ll be on won’t turn you into a homerun-slugging monster, but they will make you a raging food-frenzied, sometimes angry monster.  After my first craniotomy in 2008, I was prescribed such a high dosage of steroids that I just wanted to eat everything in sight and developed an aggressive personality at times.  Yet, the food tastes so good!  In a steroid induced rage one night in the hospital, I devoured a dish of pasta carbonara in a matter of minutes and had cheese and pasta hanging off my mouth and down my chin.  I imagine it was not the prettiest of sights but I didn’t have to witness it.
  5. You’re not a fire-breathing dragon.  Yes, you read that correctly and here is what I mean.  After major surgery, you will wake up feeling as though your throat is on fire and any time you open your mouth, flames will come out.  This is just an effect of the breathing tube that is inserted during surgery but within a few days, the feeling will subside.
  6. Water is good.  Once you wake up from the anesthesia, one of the first things you’ll want to do is chug a giant glass of ice-cold water.  So long as you’re not water or fluid restricted, your nurse should provide you water.  My advice though – take it slow.  If you drink that icy-cold water too quickly, you could get nauseous.  Heed caution.
  7. You will probably wake up from surgery with all your memories intact.  I was startled by this.  However, this depends on where the tumor was and the manner in which your surgeon operated.  Due to the location of my tumor and with each my five brain surgeries, I woke up from each feeling no different.  A recent study claims that the brain can reboot itself after surgery and the administration of anesthesia.  The brain is, simply put, amazing.
  8. It takes a long time for your nerves to regrow.  Let me be honest – when your surgeon drills your skull open, your nerves are severed and the surrounding tissue is damaged.  But with time,things will begin to feel “normal” again and you’ll start to feel better.  Your life will return to normal and you’ll feel like your old self again.
  9. Rehabilitation may become your new daily routine.  Following my first surgery, I could not talk, form sentences, recite the alphabet, read, tie my shoes, etc.  I needed intense rehab and even still, came up short on living.  Take it day-by-day and do not expect a whole lot out of yourself, especially at first.  Recovery is a process and not an overnight fix.
  10. Treat every trip out of the place that you’re in like a field trip.  Seriously.  Whether it was going to the grocery store, the post office, outside to test my arm strength, a restaurant or any other place, I was elated.  Last week, Ashley got me out of the house and went to Starbucks!  I was psyched.  If you’re worried like I am that someone will see your scars and look at you differently, grab a hat or ski cap to cover your head and live!  You’ll be happy that you did.

Accomplishing these ten things will not only give you a sense of achievement, but it will also provide you a sense of pride and victory.  Recovery can be a dark, lonely place but if you’re able to make the best of the days, you’ll find that it isn’t so bad.

Hanging Tough, Staying Hungry

I turned over and looked over at the alarm clock – it was 4:59 a.m.  My faulty brain knew that, in one minute’s time, the alarm would sound signaling it was time to be operated on.  When I arrived at the hospital, I was ushered to the triage where I was given my identification bracelet, gown, hair cap and socks – lucky me.   photo 3As the neuro-residents came over to check in on me, I waited in anticipation for them to roll me down the long corridor and into the operating room.  I waited, answered another slew of questions about my health history and waited some more.  Finally, in walked my surgeon.  He came over to reassure my family and I of his confidences and to answer any last-minute questions, but also to “mark” me. “The tumor” he said “is in my left frontal lobe.”  He then marked my left ear with an X.  Umm, why did he just mark my ear with a Sharpie?  So in typical Chris fashion, I said “Doc, I think I need my ear, don’t I?”  Everyone got a good, much-needed laugh.

Of course though, because I am Chris Cusano, nothing in my life comes easily or without issue.  Just as I was about to head into the OR, one of the techs came out and apologized as he informed me that the operating table was broken and they were just waiting for the part to fix it.  Again, I just smiled and laughed because at this point, what more can I do?

Finally, word came that the table was fixed and it was time for this monster to come out for once and for all.  I took a minute to say “see you later” and “I love you” to Ashley, my mom and dad and saw the resolve in each of their eyes.  I know they were hurting and scared on the inside, but they showed me true strength and determination as we parted ways.

As I drifted into a deep sleep, I did so with happy thoughts in mind.  I was happily woken up to my name being called and seeing smiling faces looking at me.  At the foot of my bed, there stood my surgeon giving me a thumbs up!  “We got it Chris, you did great!”  Unfortunately, the anesthesia had made me sick and I did not hear anything else that he had to say at the time.  But I felt great otherwise, all things considered.

By the time my family came in, I was alert and oriented.  photo 2Ashley and I had joked prior to the surgery that we both wondered what the tumor looked and felt like.  I had suggested to her that she ask my surgeon if she can see it and touch it.  Not a second after I saw her, I asked “so, was it soft and squishy?”  She instantly got it, laughed and told me I was still there.  My parents and the nurse were not so quick to follow.  Adults!  I have said it all along – a sense of humor and a positive outlook goes a long way.  Despite the fact that Ashley and my parents teased that I looked like a conehead, a smurf and a q-tip, I was in good spirits and knew the prayers had worked.  As I laid in the bed, I looked ahead.  I was eager to move – eager to get out of bed, walk, test my motor skills and resume my life.  To show the world and myself that I had not missed a beat.  I knew I hadn’t.

Today, fourteen days removed from surgery, I find myself thinking about the ladybug again.  After hearing that this operation was needed, my family and I felt as though she did not leave a sign, but was just there for comfort.  Yet, in the days that have passed, I believe that she appeared again to let my family and I know that all would be alright.

There are signs all around us.  Sometimes, we don’t even need to search for them.

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