Tag Archives: hope

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/.

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.

It’s The Eye of the Tiger, It’s The Thrill Of The Fight

Well, here I go.  Finally, twenty-two days removed from hearing that there has been a regrowth of the tumor and that an operation is necessary, I will be in surgery in less than 48 hours.

While I have a myriad of emotions running through my mind, I am overall in good spirits and feeling extremely optimistic about the operation.  I have the best team of doctors that someone in my position could possibly ask for and would not alter a thing.  I have the BEST family anyone could ever ask for and am surrounded by a wonderful group of friends, coworkers and acquaintances.  Nervous though?  Sure; I’d be lying if I said I wasn’t.  But I have faith.  I have been told that there are a lot of people who are praying for me and I can feel the positive energy.

But there is an additional motivating factor.  This past week, the sports world mourned the death of ESPN anchor, Stuart Scott.  Stuart passed away after a long battle with cancer but showed true strength and perseverance in the way that he fought.  On July 16, 2014, Stuart accepted the Jimmy V Award for Perseverance and gave a speech which resonated with me and millions of other warriors:  “You beat cancer by how you live, why you live, and in the manner in which you live.”  Though I do not have cancer, that statement is spot on.

A brain tumor, or any other disease for that matter, is no different.  From day one of this battle, I have not allowed my tumor to get the best of me.  Rather, I have stayed determined to battle back, punch for punch.  After all, I know that so long as I remain optimistic and stare down this adversity which life continues to throw at me, I will persevere.  The past six years have presented the darkest, most trying and most difficult of days but I will absolutely tell you that my tumor has taught me invaluable lessons about life and the way we should live.  Every day is a miracle and nothing should be taken for granted.

And with that, I’ll enjoy the next day with my head held high, confident that this is the close of this arduous journey in my young life.

Keep those prayers and good vibes coming.

So tumor, as I prepare to bid you good riddance, I do so by borrowing a phrase that Stuart made so popular on SportsCenter:  “Booyah!”

Better Things

As fast as the Christmas season came and the day itself went by, the season is now over and everyone is looking to the next big day – we’re all coming to grips.  New York City is preparing for its New Year’s Eve celebrations, students and teachers are enjoying their breaks and stores are disassembling their Christmas displays and putting up Valentine’s Day displays.  Me?  With each passing day, I’m preparing myself for surgery on January 8th and it begins with my pre-admission appointment on Friday.

Since finding out two weeks ago, I’ve remained in good spirits but find my thoughts drifting off from time to time.  No matter how hard I try not to think about it and remain focused on whatever task I’m doing, I constantly get reminded that this is really happening again;  whether it’s going to work and trying to get through the day without getting lost in my thoughts and completing short-term disability paperwork or trying to enjoy Christmas day, a day that typically brings so much joy and serenity.  At least I received plenty of gifts to occupy my time while I’m home recovering.  Yes, looking forward.

2015 brings new hope and promise and I am excited to see where life takes me next.  With a new position at work…to vacations with Ashley…to a clean bill of health.  But there is something else that I am very excited about – I was recently elected to serve on the Board of Directors of the CT Brain Tumor Alliance.

When I reached out to the CTBTA earlier this year, I did so because I wanted to help.  Over the past couple of years, I’ve felt that my true purpose in this life is to provide support, hope and help to those affected by a brain tumor.  I served on the first annual “Path of Hope: A 5K Journey for the Connecticut Brain Tumor Alliance” executive committee and assisted in the planning and successful execution of the day.  I’ve also brainstormed with the Executive Director and board members regarding implementing a patient-caregiver connection so that nobody has to go through this alone.   However, at no point in time did I expect this honor.  When I accepted, I notified the Board that I was honored and humbled and cannot wait to get started – and that’s exactly how I feel.  Unfortunately, I need to wait.   The first meeting is one week after my surgery and I will likely be unable to attend.  But then come February, I’ll be ready to go and eagerly awaiting my opportunity to share some ideas that I have with the Board and hope for their approval.

So until then, I’ll wait and keep positive.  I fully believe that the procedure will go well and the tumor will at long last be 100% gone. So I’m going to ring in 2015 as the beginning of the rest of my life.  I’ll get rid of the monster in my head for once and for all, I’ll return to the office in my new position and I’ll also be an integral part of the CTBTA.  Great things are on the horizon.

As The Kinks sang and which is my motto at the moment “forget what happened yesterday, I know that better things are on the way.”

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

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!

Don’t Worry Be Happy

That was an MRI.  For forty-five minutes, sometimes closer to an hour, this is what I have to endure.  If you’re wondering what those annoying sounds are, wonder no more.  These are the rapid pulses of electricity running through the machine to produce the images that assist doctors in discovering tumors and other bodily harms.  But don’t worry, you get ear plugs.

Worry.  That word is too commonly thrown around in today’s world.  While in the midst of working, Christmas shopping and having a social life, I have been mentally preparing myself for my MRI next week.  Shockingly though, as much as it’s been on my mind, I haven’t let myself dwell on it.  Fortunately, an MRI is nothing new for me as I have had so many in the past six years.  Instead, I look forward to MRI days as I know that they are my ticket to receiving a clean bill of health.  The process of having one though?  That’s a whole other story…

Each time that I go to the hospital to have one, I have to complete a form and list out the dates of all my past MRIs and list each hospitalization in my life.  It boggles my mind why patients are required to fill out the same form every time when we have so much on our minds as opposed to the hospital simply pulling the patient’s chart or better yet, having us review the record and noting any changes and/or updates when we arrive.  The part that gets me every time is when the radiologist says: “before I can bring you into the room, can you tell me your name and date of birth?”  As if I would be here otherwise?!  But I digress.

Over the past six years, I’ve seen images of my brain captured by MRIs.  However, it’s not just those very loud noises and shaking of the machine that produces the images – I introduce you to contrast dye.  For most MRIs and with my scans, right before the very last images are taken, contrast dye is injected into a vein.  You can feel it – your body goes from a comfortable temperature to feeling like you just walked outside into a blizzard.   But the contrast is important as it provides a greater look at the organs and for making a diagnosis.  Then there’s the claustrophobia aspect of it all; being in an MRI machine, unable to move a muscle with the mask an inch over your face is anxiety-provoking even if being in confined spaces does not bother you.

So as  part of my new-found quest to be an advocate for brain tumor research and educate the public, I’ve decided to share some of my past MRIs with you.

Let me start with this: Screen shot 2014-09-30 at 8.09.14 PMYou may recall seeing this MRI in a previous post, but I am sharing it again because this was my very first MRI – the beginning of what I now say defines who I am as a person.  The MRI shows the tumor sitting in my ventricular system up against my optic nerve and pushing my brain off to the sides.  Hydrocephalus (water on the brain) is also present.  Then, there was this from this past March:

brain-scan-2Do you see the circle in the lower right-hand corner?  If you guessed that is my shunt, then you are correct.  It’s amazing what doctors can do today.  Because of that device, my brain looks nice and relaxed.  There are no obstructions, the hydrocephalus is under control and there is no tumor regrowth.

Throughout the years, the goal was to have me scanned once per year.  During post-op years 1-3, I was scanned once every six months.  After that ,everyone (including me) hoped that I would only need to get scanned once per year but now, six years out, that has not happened…yet.  Since just last October, I have had 4 MRIs.  The one below was “pristine” and perfect.brain-scan-1

It amazes me to see this one compared with my first above.  To think that the mass was removed and in the span of five years, my brain looks normal again.  Talk about a hard job!

Okay, so enough talk about the preparation – let’s go and do this.  I’m as ready as I can be for next week and whatever results that it brings.  As mentioned in a previous blog, I am being re-scanned out of precaution.  I want to get through next week before I show you the most recent scan but as I look at it, I go back and forth on whether it looks any different.

Hopefully it’s nothing and I can resume living my life.  Hopefully I won’t have to worry and can be happy.  But time and enduring more loud noises stand in the way first.  This is the story of my life.  Yet, I manage to always find the positive in every situation – even for return trips to Yale for MRIs.

Give Thanks and Praises

And just like that, in the blink of an eye, the holiday season is upon us.  But before you sit down tomorrow to enjoy that glorious feast, take a moment to give thanks to those around you and for the plentiful gifts bestowed upon you.  Have you ever wondered why we celebrate on one day as opposed to every day?  I  know I have.  Just some food for thought.

Yesterday, I had the pleasure of listening to Army Sergeant First Class Joe Kapacziewski speak at the Middlesex County Chamber Breakfast as he was honored as the Role Model of the Year by the Chamber.  His story is eye-opening and truly inspirational.   As he shared in his remarks, Joe was injured by an enemy grenade when he and his men were ambushed in Iraq on October 3, 2005.  The ambush resulted in severe injuries to Joe’s leg, hip, artery and nerves.  He spent seven months at a rehabilitation facility relearning daily tasks that we all take for granted.  As he stated during his remarks and in during his Q and A, family, friends and his support group often got him through these difficult times.  However,  after more than 40 surgeries and countless hours of rehab, Joe made the difficult decision to have his leg amputated and then went for intense physical therapy to relearn how to walk.   Through hard work and determination, Joe was the first Ranger to return to the line with a prosthetic and was deployed to Afghanistan six times.  Furthermore, Joe was deployed eleven times in support of the Global War on Terrorism.   However, Joe shared that his return came with naysayers and those who doubted his ability and cautioned him in his quest to return.  Yet, he stared adversity in the face and is the true epitome of an American hero and someone who we can all look up to.

So this Thanksgiving, I have plenty to be thankful for.  Like Joe, I live for every day and count my blessings.

  1. My rock, my best friend – Ashley
  2. Family and friends
  3. My continued good health
  4. My job and generous co-workers
  5. The simple joys of life
  6. My dog, Coddington
  7. The setbacks endured this past year that have made me stronger and given me character
  8. The freedom of life and ability to live
  9. The ability to find hope and laughter even in bleak situations
  10. Great and lasting connections made with the wonderful people from the CTBTA

This list comprises just a small sample of all that I have to be thankful for.   I hope and believe that next year, at this time, I’ll be in a similar situation and counting my blessings and giving thanks for the wonderful gifts I recognize everyday.  However, I cannot but help to think of what my MRI next month will show.  Was the brightness just an aberration or was it tumor activity?  Time will tell.  But until that day, let’s give thanks and be grateful for the everyday gifts we receive.

So while you are enjoying that turkey and gravy, be thankful that you’re able to do so with your family and in-laws and say a prayer for me.

thanksgiving-cartoon3

Tears in Heaven

Last night, while I took my dog to the backyard, I noticed how clearly I could see the stars.  A night sky like that lends to a lot of thinking.

I had a new blog written for you all this week, but to be honest, I just couldn’t post it at this time.  There are too many thoughts and emotions swirling through my mind currently and I’ve instead decided to briefly share them.

Most of you have heard the news of Brittany Maynard, the 29 year-old woman who ended her life with dignity and courage in the face of terminal brain cancer.  Or the story of Lauren Hill, the 19 year-old NCAA basketball player who, despite having months to live, scored in her very first game.  And lastly, here in Connecticut a young girl by the name of Nina Poeta who lost her battle to brain cancer.

These are all extraordinarily tragic stories that have, quite frankly, broken my heart.  I thought about my time being “locked” in my body and I remember thinking that if I would never recover from it, that I would not want to live. I understand Brittany’s choice.   I remember my dad letting me drive myself to rehab when the doctors cautioned me against it.  It brought me such joy and hope to accomplish that, so I can almost feel Lauren’s excitement when that ball made its swish noise.   And my family’s pain when they thought I might not survive – my heart hurts for Nina ‘s loved ones.

The bright side is that they have brought brain tumors to the forefront – a place they usually don’t see.  I pray that this is only the beginning in spreading awareness of the devastation brain tumors can cause and the research that is so terribly needed.  There are so many suffering whose stories we don’t hear about.  Maybe it’s time that we do and reach out.  Here in Connecticut, we have the CTBTA working tirelessly to better the lives of those living with this disease. Without the support of the hard-working people who organized and run the CTBTA to raise funds for prevention and treatment, finding the cure someday would be impossible.  Hopefully, other support groups follow the lead and someday, every person suffering with a brain tumor has someone to turn to.

When my dog finally pulled on the leash, I snapped out of my thoughts but not before looking up and thanking those lucky stars of mine.