Tag Archives: support

I Wish That I Knew What I Know Now, When I Was Younger

Screen Shot 2016-06-29 at 9.37.10 PMHot dogs, burgers, beer, cookouts, fireworks and independence – all typical thoughts of the 4th of July (there is still no better memory than this photo from last year’s 4th of July getaway to Puerto Rico).  For me, my thoughts this holiday weekend will always be a reminder of my journey and battle.  In the blink of an eye, maybe not for all, my family included, this weekend will mark eight years since it all began.  I still remember it vividly, being wheeled into the OR on July 2, 2008.  Will I see my family again?  Will I remember everyone’s faces?  Will I be able to speak?  The list of questions goes on and on, but I knew it was my only chance of living, so this weekend, I will be rejoicing.  More importantly though, the past eight years have shown me how to live and what truly matters.  There have been many bumps in the road and unexpected twists that I did not foresee, all of which caused me to reexamine my life, my dreams and the ultimate pursuit of happiness, but I am still exploring and figuring it out.

At age 24, I was so focused on my life and pursuing my dreams, all to make as much money as possible.  Before starting law school, right through year one, I was, and still am to the extent I can be, overly ambitious.  Growing up, I saw my parents dedicate their lives to their children.  Whether it was Anheuser-Busch and driving back and forth to New York every day, Eagle Snacks, President of Cape Cod Potato Chips, followed by owning his own company, ShelfSpace Marketing, LLC, while simultaneously serving as the General Manager of Carla’s Pasta, my father was, and still very much is, a hard worker.  My mother is just as incredible, a true inspiration.  She not only raised my siblings and I, but she also taught us values and how to be a good person; she took care of the house and kept it spotless; always had breakfast, lunch and dinner ready – never failed; managed to drive all of us to lessons and appointments.  Remarkably, she did much of this while battling and beating breast cancer and never missing a beat, and is now a para-professional at an elementary school.  They always told my siblings and I: “hard work pays off.”

However, my life changed drastically between the ages of 24 and 32 and I am still waiting for my big break.  Life has been a struggle since my diagnosis – surgeries, extended hospital stays, cognitive rehabilitation, physical rehab, etc.  In addition, and as you know, I have struggled with passing the bar exam.  I still have sky-high medical and student loan bills that I have yet to make even the smallest dent in because I’m not using my JD as I envisioned.

Yet, I am still smiling because all is not lost, not even in the smallest sense.

If this ordeal has taught me anything, it is that life does not go according to plan.  Life throws you curveballs and you have to adjust accordingly.  Sure, I could have packed it in after that semester off and thrown in the towel, but I wanted to prove to myself, and any doubters, that I could excel and earn my degree.  However, what I did not know was that the initial three surgeries would not be the end, as seizures ensued, followed by a shunt revision, gamma knife surgery and one more craniotomy.  But I followed my heart and did what I wanted and have absolutely no regrets about how the past eight years have unfolded.

At 32 years old, I look at my life in quarters – the fourth quarter was pure hell.  It presented me with challenges and hardship, but now, with my renewed lease on life, I am restarting the clock and have an opportunity to explore new avenues and opportunities that perhaps would not have been possible had I gone down the path to being a lawyer.  I have been part of some great conversations of late, some of which are right under my feet.  I intend to continue exploring alternate opportunities with my firm; I just collaborated with the staff at the Yale Brain Tumor Center on content for its new website; I have been working with the Director of Special Events at Yale University on Brainstormin’ and am open to exploring opportunities there.  On the nonprofit side of things, I am the Vice President of the CTBTA and am intrigued by what the future there may hold.  I did not know how much I enjoyed fundraising and development, but it is an area that I truly enjoy, especially for a cause that I am so passionate about.

As I continue to reinvent myself, I get down on myself from time-to-time, due to what I perceive to be, “failures”.  Yet, at the end of the day, I am reminded that I still have all that is important.  As odd as it may sound, I feel blessed to have been dealt this diagnosis, as it made me a better, stronger person and has opened new doors and opportunities for me to pursue.  I am exploring life and doing things I never thought I would do.

On Tuesday, I was interviewed by iHeart Radio and was asked, “How has this experience changed your life?”

To try to answer that concisely was difficult, but as I told the interviewer, these past eight years have been eye-opening, causing me to reexamine how I live my life and taking nothing for granted and never losing hope.  We should all strive to live in the moment and not lose sight of what is important – family, health and friends.

“I wish that I knew what I know now, when I was younger.”

I’m Living My Life Like Its Golden

Being a brain tumor survivor can be lonely and scary for many, but one of the great things that has come out of this ordeal is that it gave me the chance to meet patients and survivors like myself, and to talk with them about their stories.  As I mentioned a few posts back, I wanted to offer up the opportunity for guest posts from some of the people I’ve met along the way.  Amazingly, and as you’ll read, the lyrics from the song we all heard time and time again growing up “it’s  a small world after all” is true.  This entry below is from an incredible survivor and person, Aisha.  

“Letting the joy unfold…it comes naturally.”

When Chris asked that I title my post with the title of a song, naturally I thought of Jill Scott’s “Golden”. Along with “Happy” by Pharell, Golden was often heard from my room in rehab. If you happened to walk by, you’d find me jamming in my wheelchair, basking in the sunlight pouring into my room. The powerful words inspired me to keep hope and my resolve in face of a difficult situation in my life.

My story started off benign from the beginning. No symptoms, no emergency. My tumor, or lesion as it was defined at the time, was an incidental finding on a routine CT scan following a concussion I sustained from a slip on black ice, early one dark winter morning. Months later, after four consultations, surgery was advised and I agreed. I underwent an elective neurosurgical procedure in which my tumor was removed in its entirety; however, a few days later I woke up completely paralyzed on right side. In many ways, it is then that I truly feel my brain tumor journey began. I was admitted to a stroke unit in rehab and remained there for two months after which I was transferred home. I struggled to learn to walk again, write my name, and do simple grooming. There was a time when I was in rehab that I was discouraged from working or even applying, but it remained my goal to work again and by the grace of a higher being, I was able to do so. I am now employed as an assistant academic director/assistant professor of health science for a graduate program. This May, during brain tumor awareness month, I will celebrate my 2nd anniversary since surgery and it will have also been two years of therapy.IMG_6871

In addition to the personal connection I have with Golden, it also connects me with Chris. After my discharge I still had great difficulty with walking and unfortunately was unable to attend a concert featuring Broca’s Area, a CT band in which Chris’ brother is the drummer. They were fundraising for brain tumor awareness and the article was the first time I learned of Chris Cusano, a guy around my age, from my town, and amazingly with the same rare benign brain tumor as me, a central neurocytoma. I didn’t actually meet Chris until several months later at a CTBTA meeting. Shortly after our first meeting, I attended my first CTBTA event, Laughter on the Brain, in Hartford, CT. My attendance that day was truly a blessing as I could not drive yet and my father surprised me at work. He drove me from Bridgeport, CT all the way to Hartford, CT. After I arrived, I remember registering for the event and making my way downstairs where they were serving refreshments and a performance by Broca’s Area was going on. As I was making my way down, I heard a familiar beat playing in the background and found myself grinning ear to ear. It was my song, Golden. I heard a beautiful voice on the mic, a performance Jill Scott herself would approve of. It was Kismet: my unexpected arrival, my first CTBTA event with Chris, and my song was playing. Through Chris, I met his beautiful wife Ashley and the Cusano family. As we stood by the bar listening to the band, I felt gratitude to have recovered enough to be able to hear my song live and to have found a friend in a fellow survivor.

Although I have always considered myself fortunate for having the tremendous support of my family and friends, to have the support and validation of another survivor is priceless. They say “birds of a feather, flock together”, and I feel this is very appropriate for anyone who has suffered from a brain pathology such as a tumor. Through the CTBTA, I have met numerous other brain tumor survivors and recently and more specifically, “benign” brain tumor survivors. Hearing your struggles as they are experienced by another individual provides a sense of validation that is difficult to find with caregivers and clinicians. After all, even I get tired of telling my friends, family, and even coworkers how my shoulder is sore or my leg is angry. Often I’ll joke that my left leg has requested a trial separation as it feels that it picks up too much of the work for the right. With Chris and CTBTA survivors, I could joke and hear their experiences and feel that “aha” moment. I walked away thinking, “yes, they get it”.

So now, I feel honored to be a part of a unique group of individuals who have been impacted by a brain tumor. We may be weathered by the experience but we have not exhausted our resolve. In fact, each of us has in some way decided to share our experience in case our struggle may resonate with someone else. True, the path has at times been difficult, but the memorable associations I have made along the way give me reason to smile and the strength to continue “living my life like its Golden”.

Ain’t No Stoppin’ Us Now

The Big ‘C’.

We hear about it all the time filling the airwaves, social media and conversation.  You’d be hard pressed to say that there’s anyone out there whose life hasn’t been touched by it.  My own family has been affected by cancer – as I mentioned before on this blog, my mother is a breast cancer survivor and the strongest woman who I have ever met – she even managed to raise me!

When I received my brain tumor diagnosis, the one blessing bestowed upon me was that the doctors thought it was likely benign.  A malignant tumor would have presented so many more challenges than I was already facing.

Just as with any type of cancer, brain cancer is awful.  There’s no denying that fact.  I thought maybe it was just me, but it seems to be a common thread among benign brain tumor patients to feel a sense of guilt in opening up about their struggles due to our benign status.  Trust me, we are grateful and while we do consider it a stroke of great luck to not have encountered the big ‘C’ in our journeys, our benign tumors have presented us with unique challenges which we will deal with for the rest of our lives.

This past Saturday, I met up with three truly remarkable, inspirational people from right here in Connecticut who have gone down the same path I have – Rob, Aisha and Julia.  All three were diagnosed with benign brain tumors.  As we sat around the table for coffee, sharing our stories, I felt the connection of togetherness and pride in that while we may each have undergone a traumatic experience, we are still here and able to share our stories.   The scars on our heads cannot take away our ability to live and sometimes even important, to laugh.

This meeting was something I had wanted to do for a while, to reach out and talk with others in the same situation like I am.  Now, I do not want to take anything away from anyone with brain cancer, or any other form of cancer – I hate the thought of it.  But hear me out.

Being diagnosed with a benign brain tumor and having it removed is not the end of the struggles, unfortunately.  If you been following my story, you know my continued struggles and the additional surgeries and procedures that were needed.  However, I am very fortunate in the grand scheme of things – something which I have known for quite some time, but which I sometimes forget to appreciate.  The four of us each had to fight to regain our livelihoods, which included intensive rehabilitation and requiring us to put our lives on hold.

Pre-brain tumor, Rob created a very successful life for himself.  He spent years in the music industry, working as the tour agent for musicians including Britney Spears, the Backstreet Boys, Justin Timberlake, Mary J. Blige and most recently, the Jonas Brothers.  Unfortunately though, in November 2012, Rob’s life changed forever when he was diagnosed with a brain tumor on his brain stem and spent nearly 200 consecutive days in various hospitals.  During that time, he underwent 9 surgeries and countless hours of rehab.  He developed hydrocephalus and now lives with a shunt.  He still experiences double vision and is restricted to driving during the day.  However, Rob is full of hope and is an inspiration to me and everyone around him.  I have been in Rob’s company on several occasions now, and despite his challenges, not once have I heard him complain about his life or feel sorrow for himself.  His doctors will continue to monitor the remaining tumor that is left on his brain stem and his hydrocephalus is under control with the shunt.

Aisha, whom I’ve previously mentioned on this blog, was diagnosed with the same type of tumor as me – a central neurocytoma.  Ironically enough, she grew up and lives in North Haven, CT, the same town that I grew up in and come to find out, in very close proximity to where I used to live.  Like me, she was treated at Yale-New Haven Hospital and her prognosis is good.  Aisha is a spirited and hysterical individual with a tremendous outlook.  She shared a story with us of how she applied for a teaching job at the University of Bridgeport and was called for an interview while in the hospital.   Determined, she asked if she could interview via Skype.  While she did not Skype with them, she did end up going for an interview five months later when she was home and recovered, and was the successful candidate for the search.  Despite her fortunes, Aisha is left with paralysis on her right side, requiring a cane to enable her to walk.  There’s no stopping her though – she doesn’t let her challenges bring her down.  She truly lights up any room with her positivity.

Julia reached out to the CTBTA seeking to volunteer and help our organization – not to mention, she is full of wonderful ideas!  A phenomenal personality and pleasure to meet with, I knew she was committed to this cause from the moment we exchanged our hellos.   Before her diagnosis, Julia was experiencing headaches and loss of smell, which she believed to be a sinus issue.  Unfortunately, she was diagnosed with a meningioma and underwent a craniotomy and then again surgery for a CSF leak and infection she developed.  Julia has since lost her sense of smell and can only taste certain things, but certainly has not lost her sense of humor!  During our meeting, she asked the rest of the group about our screws.  Yes, screws.  Julia pointed to a spot at the top of her forehead and another one above her right eye where the doctors inserted screws to place her skull back in.  When I reached out for her consent to share her story with you, she referred to herself as “part bride of Frankenstein, nuts and bolts and all!”  Despite her sense of humor however, she expressed frustrations with her memory and fears of neuropsych testing, all while waiting for a decision on her disability.  Yet, in the eyes of a seven-year survivor, for someone who is only seven months out, I think she’s doing remarkably well!

I think the four of us would all agree that joining together and sharing our stories – the pain, the struggles, and believe it or not, the belly-hurting laughs, was a great experience.  There’s just something about the camaraderie felt between those sharing similar experiences that is therapeutic.

So yes, while a cancerous tumor certainly is not the same as a benign tumor, tumors are tumors and they each present their challenges and obstacles.  It is my hope, at least, that together we will bring all brain tumors to the forefront – both cancerous and benign.

Because after all, grey matters.

Auld Lang Syne

2015 was a rollercoaster – full of ups and downs.  Off the bat, the year began down at Yale for surgery to remove a recurrence of the beast and ended with champagne and dinner with Ashley.  I was operated on a Thursday and released the following Saturday, a remarkably shorter stay than my first go-around.   photo 1My surgeon and medical staff did another amazing job in caring for me and I will be forever grateful for their support.

However, things greatly improved thereafter.  I returned to work just three weeks removed from my surgery and shocked everyone when I walked through those doors and made an immediate impact in my new role.  Furthermore, I attended my first meeting as a Director of the CT Brain Tumor Alliance and found myself amongst a terrific group of caring and compassionate survivors and caregivers who understood “me”.  As a board member, I had the opportunity to hear from various hospitals, doctors and oncologists about what they are doing in their quest to treat brain tumors and ultimately find the cure and it brought such hope to all of us in the room.  It’s not common that you will find a non-profit Board composed solely of survivors and caregivers, but that is what makes our organization so unique.  Together, with our Executive Director, we held numerous events in the state to raise funds and awareness, notably the Wines of March, Laughter on the Brain, Night of Hope and the Path of Hope.

Yet, with these “ups” came more downs.  As I’ve alluded to in previous posts, the Connecticut brain tumor community lost two wonderfully dedicated individuals who devoted themselves to brain tumor awareness and funding.  They will be forever missed, but our mission has been strengthened by their loss.  For me personally, last year’s Playing for the Cure: Brainstormin’ held so much more of an importance in the wake of those two losses.  And that is why I am so excited about the prospect of an even larger and grander scale event this year – to honor those we have lost, but to continue fighting for the cure to aid those who are still courageously fighting this disease.

My family, friends and I are already looking forward to September 16, 2016 for the third year of Playing for the Cure: Brainstormin’ at the Stony Creek Brewery in Branford, Connecticut.  I will be sure to provide updates as time moves on, so stay tuned!

But where else am I going to go with this blog from here, you ask?  Admittedly, I am at a crossroads.  On one hand, I have used this blog to tell you my story and unfold the past seven years into words.  Recently I received the news of a lifetime at my last MRI and I’ll return to Yale for another scan in May.  I thank you all for being there with me in spirit along the way.  But this is not the end.

I am going to put a new twist on things and offer up the opportunity for some guest bloggers to share their story, as each brain tumor diagnosis is not the same.  Before my diagnosis, I did not know anyone personally who was diagnosed with a brain tumor.  Unfortunately, I now hear about it more frequently than I would hope.  I will start sharing with you the progress and happenings of my alliance with the team at the Yale Brain Tumor Center.  I have been told that their doctors and nurses are all eagerly working toward creating new and exciting web content with me as their liaison, so this is pretty exciting!  Yes, I said exciting – if you had asked me on June 30, 2008 if I thought I’d be excited about brain tumor work, the answer certainly would have been NO.  Ohh, how things can change and how life can throw you into a direction you never expected.  I also hope to take on a greater fundraising role on my own and in conjunction with the CT Brain Tumor Alliance.

I have found my passion and my calling.  My parents always told me that “everything happens for a reason” but I never quite understood why I was dealt this diagnosis.  However, I am certainly a better and stronger person today because of it and have found something that makes me truly happy – I have found my passion.

I look forward to talking with you all in 2016 and hopefully connecting with more people on an individual basis in a greater capacity.  This is a new year and a new opportunity to explore all of our potential.

Hallelujah

With the Christmas season now upon us and in full swing, we’re all asking each other “what do you want for Christmas?”  Let’s see – clothes, some books, an iPad?  Maybe a watch or some jewelry?  However, for me, this Christmas and holiday season feels differently.   I feel blessed every day that I wake up and go to work – just grateful to be alive and knowing how fortunate I am compared to those who aren’t as lucky as myself.

It was this time last year that I learned of the regrowth of my tumor and I prepared for yet another surgery.  This year, I am in good health, happy and grateful to be here enjoying life.  Sure, I am in stores shopping and watching as the rest of society furiously runs into stores hunting for that one special gift or the best bargain they can find.  But shouldn’t we all take a minute and remember what the “true” meaning of the holiday is?  I think so.  As Linus said to Charlie Brown:CharlieBrownChristmas

And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, Fear not: for, behold, I bring you tidings of great joy, which shall be to all people. For unto you is born this day in the city of David a Savior, which is Christ the Lord.  And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger. And suddenly there was with the angel a multitude of the heavenly host praising God, and saying, Glory to God in the highest, and on earth peace and goodwill towards men.  That’s what Christmas is all about, Charlie Brown.”  

I can relate to good ole’ Charlie Brown.  As I have gotten older and with all that I have gone through, I can appreciate the true meaning of the holiday.  Yesterday, Ashley and I went to see “A Wonderful Life” at the Goodspeed Opera House.  You know the story…a man down on his luck financially contemplates suicide until an angel shows him the value of his simple, yet fulfilling life.

It’s a relatable tale, as each of us I’m sure can remember a time when we felt a little desperate, like George Bailey.  While the beginning of this year was difficult with undergoing surgery, and then with the lives of two young fellow brain tumor patients taken too soon, I’ve been trying to take in every moment of this holiday season.  I live a quiet, fairly simple life…but walking around a beautiful quaint town with my wife on an unseasonably warm December day, going to see a show and enjoying a phenomenal dinner made me feel so grateful for this life.  The little things most certainly are the big things, and it almost feels doubly so at the holidays.

No matter how overwhelming and dark life can seem at times, there is good all around us.  Sometimes it takes an angel to drive that point home.  I have a couple new angels this year.  I hope that somewhere in the distance I will hear the faint ringing of a bell and that those angels are gaining their wings, because they’ve most certainly left their impact.  As Leonard Cohen sang: “Hallelujah, Hallelujah.”

So while I don’t expect anyone to stop running around the mall to find that perfect gift, not even myself, I ask that you just take a few moments during your holiday season to count all of your blessings, no matter how big or small.

Thank You, Friends

Every cloud has a silver lining.

If you would have asked me in 2008 whether I would find any positives in my diagnosis, I more than likely would have said “no chance.”

Amazingly though, as I sit here seven years later, I can say with absolute certainty, the answer to that question is a profound “yes!” At the time I was diagnosed in 2008, I was 24 years old and left wondering whether I would even make it through the surgery, never mind what my future would have in store.  Through the multiple ups and downs that I have faced since that day, I am standing prouder and taller than ever.  I have found my calling.

What I failed to realize in 2008 is how my diagnosis would change my life, and the lives of those around me, namely my family.  Yesterday, along with my wife and family, we went to Yale-New Haven Hospital and presented a check in the amount of $13,500.00.

Dr. Joseph Piepmeier with my brother Stephen and I.
Dr. Joseph Piepmeier with my brother Stephen and I.

Without each and every person who supported this event, attended the concert, donated to the fund or donated merchandise for our raffle, yesterday’s presentation of the check would not have been possible.  Because of you, we are providing hope to patients and their families dealing with this diagnosis.  With these monies, Dr. Piepmeier and researchers at Yale spoke of hope and possibility to better treat brain tumors.  He discussed his hope to develop a virus to destroy the tumor cells that can be injected directly into the tumor but while not harming the brain.  To think that this money can deliver those results brings a smile to my face, and should certainly bring one to yours also.

First and foremost, I thank Ashley and my family for supporting me in this quest and continuing to be there by my side  every step of the way.  Without you, none of this would be possible.

Next, a giant thank you to our sponsors.  Without your support, this would have never been possible.  I am humbled by your generosity and compassion.  I want to make a special mention to the “Rock Stars”, our corporate sponsors Carla’s Pasta and ShelfSpace Marketing, LLC.  THANK YOU!

I would be remiss to not mention each company who donated a raffle item – J. Christian’s, Omar Coffee Co., Arnold’s Jewelers, Libero Jewelers, The Max Restaurant Group, The University of Connecticut, Ted’s Auto, Precision Concepts and The Walter Camp Football Foundation.  The raffle raised about $2,500 of the $13,500.  Thank you for your support, dedication to this event and desire to assist in this quest.  Your generosity alone merits the grandest of recognition and I hope that you can feel the pride of knowing that you contributed in such a great way.

To the bands, Broca’s Area and Goodnight Blue Moon – absolutely amazing.   You entertained the crowd all night long and gave all of us, brain tumor patients included, a reason to smile and forget about life for a while.  As I mentioned in an earlier blog post, you made the night the success that it was.

I am thrilled to tell you that next year, we’re taking the concert to the Stoney Creek Brewery in Branford.  We tested the waters and now know that this event could be the success that we originally envisioned.

So what more can I say, other than: “Thank you, friends.  Wouldn’t be here if it wasn’t for you.”

Turn the Record On, It’s Time For Something

Yes, I know I haven’t updated you on Playing for the Cure: Brainstormin’, but I needed some time.  Time to relax and recover.  Time to enjoy the fruits of our labor and allow for donations continue to come in supporting this cause.  Time to finalize the details for the Path of Hope, a 5K Journey to Benefit the Connecticut Brain Tumor Alliance and enjoy in its success.  But also time to reflect on life and the fortunes I’ve been blessed with.

Let’s start with the concert.  If you were to ask me to summarize it in one word, I’d say “exhilarating”.

For those of you who attended and/or contributed, thank you!  I am elated to announce that, through our joint efforts with our sponsors and everyone who donated and came out to celebrate the night, we have surpassed last year’s donation for The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.   I am saving announcing the grand total until we have presented the check to Yale, but we are all very excited!  This money will go towards research (such as developing a virus that is injected into the brain to kill the cancer cells without harming the brain), clinical trials, DSC_0627 less invasive methods to treat the tumor, and beyond.

It was a night full of hope and inspiration.  We had terrific bands.  There was a raffle with amazing prizes donated from local businesses, family and friends.  I had the opportunity to meet the mother of a brain cancer patient with whom I connected previously on social media and was inspired by her words and drive to fight.  A fellow brain tumor patient, Aisha Khan, also from North Haven, came to show her support of the cause and is an avid fan of Broca’s Area.  Prior to the concert, my parents’ neighbor let them know he was unable to attend this year, but wished to purchase raffle tickets and instructed them that if he won, to have me donate his prize to a brain tumor patient or survivor.  When my parents arrived at the venue that night and told me this, I got goosebumps and felt proud knowing that we’re making a difference.  Sure enough, about halfway through the raffle, a ticket was pulled and I leaned toward the microphone and announced that the winner of this item was donating his winnings and I selected Aisha as the beneficiary of a $100 gift card donated by the Max Restaurant Group.

It’s the small things like this act of kindness that make the work and effort worth it all.

But it was also a night where I stood in the back of the room and took it all in.  I admired the hard work of my family and friends.  Watching in awe as something terrible has transpired into something so grand.  Along with my surgeon, we stood there and listened toDSC_0631 Goodnight Blue Moon.  With the first note the group sang, their vocal harmonies captured us all and their music was thoroughly enjoyed.  The band brought their merchandise to sell and graciously split their profit with The Cusano Family Brain Tumor Fund.  I purchased both CDs and have been listening to each nonstop.  “Thank you” Goodnight Blue Moon, hopefully you’ll be up for playing at next year’s show!  And a huge thank you to DSC_0633Broca’s Area for your continued support of this cause.  If you have not yet heard them play, I strongly encourage you to take a look at their schedule and catch them in an area near you.

Yet, in the midst of writing this post, the brain tumor community lost yet another truly remarkable, inspirational and brave individual to this awful disease.  Candice and I met via social media a couple of years ago and have connected at various CTBTA events.  She was a huge supporter of this concert and I.  Always with a smile on her face, she triumphantly marched on.  Sadly, last week, Candice lost her battle to brain cancer, but she lives on in my memory as an inspiration and another reason that I continue to fight on and organize this concert.

I am hopeful that next year, this concert will be even bigger and better, and I look forward to seeing new faces that I’ve never met before to connect and be a source of hope and inspiration.  And I would love for you to be the same for me.

Grazing In The Grass

Chip,

Where do I begin?  You were a brother to myself, Jackie and Stephen, a son to Mom and Dad and you enjoyed a life full of love and character.  For the past fourteen years, you brought such joy, smiles and true companionship to all of us.  Mom sent me this picture taken of you last Tuesday – typical you!  IMG_1922You loved to roam and lay in the grass and never wanted to come in.  And now, I hope that you have found a lush patch of grass in Heaven that you can lay on permanently.  Thank you for always being such a loyal friend and companion to us all.

I have so many good memories with you that it is hard to pick which ones I want to tell you about.  I will always remember the day that we brought you home, how small you were.  I will never forget the countless hours that I spent with you when you first came home, lining up your food toward the bowl.  You would eat each piece one-by-one and then eventually, you would lick the bowl clean.  I will also always savor the times that you heard my car turn into the driveway and race to the door to anxiously sit there, waiting for me to come in and you would give me the best greeting ever.  Or how about car rides – you loved the feel of your ears and hair blowing in the wind.  And I know you’re a dog, but you loved beer and I hope they have some for you up there!  There were trips with us to the Christmas tree farm!  But for as long as I live, I will always remember the times spent on the couch when you jumped up and curled yourself into my lap.  I honestly don’t know who loved it more, you or I?

On July 1, 2008, I got the phone call with my MRI results.  Amidst the flurry of emotion that day, I neglected to give you your birthday present and I told Mom and Dad during my hospital stay that I was afraid I would never be going home and would potentially never see you again.  When I finally got home on July 15th, I cried from joy and euphoria and you were there to greet me.  I finally got to give you your birthday present!

Saturday morning, when Mom and Dad called me with the news, I went and sat on the deck to reflect on your life and the joy that you brought us over the past fourteen years.  As all of the happy and fun memories ran through my mind, I was overcome by emotion and I looked up at the sky and the sun and said a prayer for you.  By the time I looked back down at the table and opened my eyes, and with Ashley as my witness, there she IMG_1921was, just staring at me.  I was in shock and awe.  I know this was a sign from you, telling me that you were finally at peace after suffering for the past two months.  I began to cry some more because of the coincidence of seeing another ladybug in the time of need.  You sent us all the sign that we needed.  Another ladybug, another sign from above.  Just like Dad witnessed during my neuropsychological testing when he prayed for a sign that I would be okay, or when I went for my last MRI in April that there would no evidence of growth and the ladybug appeared in Dad’s office, this was my sign letting me know you were at peace.  A great reaffirmation that we made the right decision in designing the logo for the Cusano Family Brain Tumor Fund.

We will all miss you and always cherish the times spent with you.  You made our family better, and I thank you for that.  Rest in peace, Chip.

With A Little Help From My Friends

This entry was written by my father, Tony Cusano:

I remember the day we got the news like yesterday – the cause of the mysterious double vision would finally be known.  The phone rang and it was the call we had waited three long days for:

“Hi, Dr. Spector would like you to come in this afternoon – your results are in.”

As we were driving to his office, I did not have a good feeling.  The unknown was killing me and we needed an answer.   We walked right into his office and Dr. Spector did not pull any punches.

I heard the words that he was saying to Chris and I was hoping that it was a dream:  “Your MRI shows a massive tumor in the center of your brain.  Your brain has been pushed aside and your optic nerve is being crushed, thus the reason for your double vision.  You also have hydrocephalus, and quite honestly, I do not know how you are functioning.  I have already contacted the chief of neurosurgery at Yale and he and his doctors will be waiting for you when you arrive.”

I could not speak, there was no saliva in my mouth.  I felt my heart was racing and my legs suddenly felt very unstable.  I hugged Chris and we both cried but immediately, we went on the offensive.  After enduring the mysterious double vision and headaches, we now knew what we were fighting and I honestly believed that he was going to be alright.  The battle was excruciating, full of ups and downs with many more unknowns, and it will continue throughout Chris’ life.

I tell you this piece of the story again because my family and I have now chosen to continue to fight the war on brain tumors and brain cancer.  It is the reason that we now do these fundraisers.  If I can alleviate the pain that some other parent and child may have to go through by the efforts of these fundraisers, then all of this work is well worth it.

I have a new found respect for fundraisers and directors of corporate relations because fundraising is not an easy task.  No matter how noble the cause is asking for donations, raffle gifts, favors or attending an event, it is never easy.   We are all so busy with our own schedules and we all have our causes that we want to support.

But our cause is true in spirit.  We know the pain of this disease, and what it can do to the individual and the family.  One hundred percent of the money raised is donated to the Yale Brain Tumor Center where the money is used to promote better brain tumor treatment options and support clinical and laboratory research to find a cure for brain tumors.  It is nice to know where the money is going and what the doctors are doing with it in their efforts to learn about the tumors and stop the disease from affecting families like ours.

We are so close to our goal for this years event.  I thank all of our family, friends and business organizations who have donated this year and in the past, but additional support would go a long way in assisting now and in the future.   If you can make a donation, if you can donate a raffle gift, but most importantly if you can attend the concert on September 19th, we would greatly appreciate it.TCFBT flyer size

 

There Is A Light That Never Goes Out

The brain tumor community lost another warrior last week, Martin Syndomin.  I will always remember my first CTBTA walk meeting last year.  Along with Directors, volunteers, Ashley and I, there was Martin – I felt an immediate connection with him.  He was a young brain tumor survivor who worked in finance in New York City, but his passion was volunteering for the Connecticut Brain Tumor Alliance.  With the first ever Path of Hope last year, he was instrumental in assisting with the financials, registration site and site visits, among others.  But what stood out to me was his passion for just being there and lending an ear to myself and other new volunteers.  I remember him giving my wife and I the biggest hug after that first meeting – the most genuine and sincere “It’s so nice to meet you” I’ve ever experienced.  Martin, you will be sorely missed but your fight will carry on.  I can promise you that I will continue my pledge to help find the cure and develop new treatments in the fight against this terrible disease.

When we suffer the loss of someone, we often express our grief by saying our “hearts are heavy”.   It’s certainly an accurate description, however after Martin’s loss, I felt a little differently.  My heart is heavy, but it’s full.  Full of realization and fight.  Full of renewed energy to live a life others so valiantly lost.

There is a lot of current promise out there to make me feel like this is not some lofty, far-fetched hope.  I look at the work of the CTBTA; I look at the National Brain Tumor Society and the American Brain Tumor Association; I look at the work and promising research being conducted at the hospitals around Connecticut.  Great things are happening and it should leave brain tumor and brain cancer patients feeling hopeful.  Together, this all makes me believe that finding the cure is certainly within reach in the not too distant future.

And while as a community we are working to reach this goal, there is something we can all do a little better.  Appreciate.  Enjoy.  Smile.  Laugh.  Of course it’s not all perfect.  So when life hurts, cry.  Cry the ugly cry if you have to.  Don’t hold back on anything.

There’s no judge or jury needed.  I’m often guilty of zeroing in on nonsense, guilty of not truly living.

So, for me, for Martin, for everyone, I ask one thing.

Experience.