We Will Rock You!

It’s that time of year again!  Playing for the Cure: Brainstormin’ is less than 100 days away!  Hopefully you have it marked on your calendar, but just in case, save the date for September 15, 2017 at Stony Creek Brewery in Branford, CT.

Last year was a tremendous success, thanks to all of you, and we are hoping to build our accomplishments.  We are excited to be returning to the Creek and I hope all of my readers will join us again.  This will be our fourth year hosting this fundraiser, and I am hopeful for another breakthrough year and to continue helping Yale by bringing a smile to their face, just as they did while delivering the news to me this past May.

Four years ago, when my family began this fundraiser, who could have thought that an event to raise funds for brain tumors would turn into a full blown celebration.  We have you to thank for that – for helping to turn a somber topic into a night of hope, fun, love and laughs.  So without further ado, the details to date…

Back by popular demand is the CT-based band, Wise Old Moon, featuring our own Stephen Cusano on the drums.   We’re also excited to announce our emcee for the evening: the River’s 105.9 Renee DeNino!  There will also be a great lineup of prizes and auction items, and of course, thanks to Al Mac Motors II, we’ll be raffling off a 50cc street scooter again this year.  This could be your year!

As a third party fundraiser for the Yale School of Medicine, and in particular the Yale Brain Tumor Center, we hope you will support us.  A special thank you to our sponsors to date: ShelfSpace Marketing, LLC; Carla’s Pasta; Dental Associates of North Haven; Arnold’s Jewelers; T’s Alterations; Beirne Wealth Consulting; Blum Shapiro; Henry, Raymond & Thompson; Bank of Montreal; People’s Bank; Stew Leonard’s; Sardilli Produce; and Stop & Shop.

There is still time to sponsor and help us in our quest to raise money for the doctors and researchers at Yale where I  was treated and blessed with a renewed gift of life.

With each passing day, all of us continue to be affected by another brain tumor diagnosis.  With your help, we will assist doctors, researchers and scientists in their important work as they develop the cure to brain tumors.  Just last week, along with my peers at the CT Brain Tumor Alliance, we visited the Yale Brain Tumor Center for a tour, to visit the OR and the lab and hear about their research, and it is impressive.  I learned about the preliminary findings of the central neurocytoma project one of the PhD candidates is currently working on for his thesis, and I cannot wait to hear his final findings and share them with you.

Yale is fully committed to the patient and family, but they need our help.

Please visit http://www.cusanosagainstbraintumors.com for further information.  If you have joined us during the past three years, you know this will be a night you do not want to miss.

I look forward to seeing you on September 15th!

It might seem crazy what I’m about to say…

…but my tumor has made me a better person.

The exciting news this week continues.  In the past week, I learned that my MRI was clear and my brain is tumor free, and this past Friday night, the Connecticut Brain Tumor Alliance celebrated its tenth anniversary and also brought me some exciting news that I can now share with you.

The news here will be short and sweet as the video below says it all:

Thank you, CTBTA, for the kind introduction and for entrusting me to lead this organization and take us to the next level.  I am eager and excited to start this next chapter in my life and to continue bettering the lives of those afflicted with this disease, and as our mission statement states: “to be the resource for brain tumor patients and caregivers in Connecticut and the driving force in making Connecticut a center of excellence for patient care, brain tumor treatment, and research for the cure.”

Here’s to much success in the days and years ahead!  I can, “because I’m happy.”

Victorious

“Adversity.  We cannot direct the wind, but we can adjust the sails.”

After 9 years of making adjustments and coping with bad news that seemed as though it would never end, today, I am victorious.

I spent the morning at Yale for an MRI.  As I laid in the noisy tube, I reflected on the past nine years and thought about what my life would be like if the scan was clear and the tumor truly was gone for good.  For nearly one-third of my life, I have made trips to Yale for surgeries, appointments, having staples removed, and MRI’s that ranged from 3 months to one year.  Going in today, and as I laid there humming to the tapping noises emanating from the machine, I knew there was the distinct possibility that this life experience could be a thing of the past after my appointment with my doctor.  But I take nothing for granted these days, including Ashley, my best friend and the one who has been there with me every step of the day since day one, when I called her after receiving this horrifying diagnosis.

Together, we stalled in the cafeteria until my appointment. Soon after, we went up to the consultation room, he walked in and delivered the news…

“Your brain looks pristine!  Everything looks great!”  He was pretty confident after the last scan that this would be the case and reminded me that he was pretty aggressive during the last surgery, so he was not entirely surprised.  I thought I was dreaming, albeit a happy dream.  Logically, the question “What should our plan be going forward?” was presented.  After a brief discussion, it was decided that I do not need another MRI for 2 YEARS.  Yes, you read that correctly!  If I ever need anything though, I’ll know where to find him.

I have not fully digested this news yet, and it has not quite sunk in.  Fortunately, this chapter of my life appears to have drawn to a close – and I don’t say this lightly. This battle has not been mine
 to bear alone, but that of my family as well – and without all of their support, I would not be here, writing to you.  They have played such an instrumental part in my recovery and never once stopped believing in me, nor allowed me to give up on myself or dreams.

I look forward to many more years of health and sharing my stories of hope, courage and inspiration with each of you.

Cheers!

Teacher Teacher

“Chris, you have a very large brain tumor, we think it is benign and the pathology will confirm it.  We need to get you into surgery tomorrow.”

What the hell did this mean?  All of this medical jargon was being thrown at my family and I and we had no clue where to turn or what was happening.  In the matter of minutes, I heard about the plans for the operation, the estimates of my prognosis, what to expect after surgery and rehab.  I was told that the tumor most likely was a neurocytoma, but that in and of itself meant nothing to me.  All I heard was brain tumor.  I heard that as long as there were no complications, I’d be home in a week and that I could resume the life I had grown accustomed to living.  Along with my family, we tried to make sense out of all of these terms and to process what my life would be like after the surgery.  However, what I learned very quickly is that there were no tools to guide us on this journey.   Other than confident doctors and nurses, there is nothing that could adequately prepare you for brain surgery, especially in such a short amount of time.  So as I told my surgeon all these years later, I wanted to help the brain tumor center at Yale in assisting  the patients/families they treat there in creating a  tool, a guide anyone in need on this journey so that nobody else has to go through the pain, the hardships, the trials and errors that my family and I endured over the next three months.

Over the past year, I have worked with a team from the Yale Brain Tumor Center in creating this very tool.  While it is still very much a work in progress, I am thrilled by seeing this idea come to life and providing a resource to all who need it.  On the Neurosurgery website of the Yale School of Medicine sits “Brain Tumor Patient Education“.

You will find facts about brain tumors, though not all types.  You can read about what it’s like to “meet your team” for the first time, and this goes well beyond your surgeon and assistant.  We have provided  general information about the various types of treatment and have ensured that the content is presented in a way that anyone can read and comprehend it.  We hear the word “surgery” but it’s so much more than an operation.  There are the pre-surgery procedures a patient has to undergo; there are things a patient should know about during surgery; and finally, life after surgery.  I am sure that reading this could be scary, but it has been put out there to help.  I woke up from surgery and had great difficulties.  My cognitive functions were gone and I was not expecting that.  However, had I have had the chance to know about these things before hand, I would have at least been mentally prepared for the risk.  You will also find information for radiation and chemotherapy here.

Finally, and most importantly for me, was the creation of “life after a brain tumor” to make for a wholly educated patient.  There are helpful links that a patient and their caregiver can visit; resources such as local support; the latest on clinical trials; etc.  Our team went so far as to break it down by life after a benign brain tumor; life after a malignant brain tumor; and life after a metastatic brain tumor.  On each, you will find helpful information on everyday living – driving, work, surveillance (continuing MRIs), eating and drinking, nutrition, traveling, financial counseling, etc.

I am excited to continue working with this talented group of nurses and researchers in putting this “guide” together.  While nothing on this site should be construed as medical advice or opinions, I do hope it is helpful for that newly diagnosed patient and/or family as they embark on this terrifying journey.  I have met so many remarkable people who have undergone each of these different experiences, as well as the caregivers who live this battle with them. Hopefully, with this education, the journey will not seem so bad and you can be a little better prepared than we were.

I guess it is fitting that I write this post just before my first-ever one year MRI (as you’ll read, the intervals for followup varies on a case-by-case basis).  Stay tuned for an update!

Listen To The Music

img_1463This past Tuesday, I went to the gym and left there with a new memory of my life nearly nine years ago now.  It was something that I remember clearly, but one of the memories that was lost on me.

It was July 2008, just after my first two surgeries.  I was at Gaylord Hospital for rehab and Ellen, my speech pathologist was trying her hardest to get me to express myself.  I understood everything she was saying, but could never verbalize a response.  From conversations she had with my family prior to me being a patient there, it was known that I enjoyed playing the piano and had been in the middle of writing a song upon my diagnosis. Back in 2014, I shared my original composition Brainstorm’ with you, but at the gym, a song by one of my favorite pianists, George Winston, came on which I hadn’t heard in a long time.  As I went to skip to the next song, I saw my name – it was my recording of the song and it brought me back.

I finished writing the rest of Brainstorm’ shortly after returning home in 2008 and continued to play all of the songs that I enjoyed most.  During law school, I played on my keyboard, but this was nothing compared to my baby grand at my parents’ house, but it did the job.  After the shunt surgery and during my leave of absence from school, I was living home and able to play more than ever.  I found that music was my medicine, it healed me and was one of the joys that got me through the days.

In December 2008, just four months after my miracle, I was in the recording studio and though I had been there before, being there this time was surreal and took on a whole new meaning.  Maybe it was because during the depths of my illness, I was afraid that playing again was impossible, but here I was, sitting at a Steinway grand piano and playing the songs I had been working on prior to my diagnosis.  It was a day that I’ll never forget.  I recorded nine songs that day, and as I played each one, I could not help but to think of all that I had gone through.  Here I was, joking around with the recording engineer and hearing his remarks after what I had been through made for a memorable day.

The CD was ready to pick up within a week, but it had to be more than ordinary.  Thanks to my sister who designed the jacket, I wrote a special dedication to my family, friends, doctors and medical professionals. Four months after being unable to play my beloved piano, my CD was ready.  It was ready to share with my family, friends, doctors and medical professionals, including Ellen.

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Music heals and music is therapy.  I am reenergized and reinvigorated to play more often – one day soon when I have room, I’ll have my piano and possibly even write another song to add to the soundtrack of my life.

That Spirit of Christmas

img_3995Here we are yet again – visiting, decorating, shopping and wrapping, all while maintaining a work-life balance.  It wouldn’t be the Christmas season without a little bit of added stress – and Coddington chewing Santa.  Last December, I wrote about enjoying the moment and enjoying the holidays, and I have frequently preached the same idea.

Despite all of my own advice, I am one of the worst violators at times.  Sure, I can chalk it up to eight years of MRIs, surgeries and seizures, experiencing let down after let down in the pursuit of my career, but the reality is that I have failed to count my blessings.  Life could have went in a very different direction for me in a heartbeat, but for whatever the reason, that wasn’t the plan.  No one is expected to be the epitome of a carefree, happy person 24/7, but, as I am reminded by Ashley, I have a lot to be grateful for this holiday season and every day – maybe like my friend Ebenezer I’ve been visited by the Ghosts of Christmas past, present and future in my sleep last night, because today it has suddenly become so clear.  With my perceived troubles, it is easy for me to forget how well things turned out for me.

Life is not guaranteed and there is simply no time to be down in the dumps.  This Christmas season and the beginning of the year is a time to start taking the advice I constantly dole out to others.  I’m not looking back.

On Monday night before the Ravens and Patriots squared off, ESPN opened the broadcast with a story that hit home.  My social media news feed was subsequently filled with the story of an amazing fighter from here in Connecticut battling brain cancer.  I cried as I watched this video, as I was overcome by profound sadness for Logan and his family.  As a Giants fan – thank you Tom Brady for helping to make this fan’s wish come true and the doctors at CCMC for giving him his own “# 12.”  I am praying for Logan and his family during the days ahead.  http://www.espn.com/video/clip?id=18266035.

As I watched this story, I was reminded once again just how lucky I am.  This one got me.  I am determined to live the renewed lease on life that I was given.

Here I am, eight years removed from what could have been, but I cannot find happiness on a day-to-day basis, all for no good reason. No more though.  I am going to live, love, laugh and smile more.

Finish your shopping and wrapping.  Enjoy the company of family and friends.  But find time to laugh and smile more  – not just around Christmastime, but all year long.  As the late, great Ray Charles said:

All the kin folk gather round
The lovely Christmas tree
Hearts are glowing full of joy
Sense the gifts that we’re giving
And the love that we’re living
Why can’t it remain
Oh all through the year
Each day the same
that’s what I wanna hear
I’ll tell ya
It’s truly amazin’
That spirit of Christmas

Twenty-Four Seven, It’s A Labor of Love

Well friends – the day has come where I can FINALLY share with you the success of Playing for the Cure: Brainstormin’.  The timing is good as the news has been very negative of late, no matter which party you affiliate with.  So let me cut right to the chase and end the anticipation…

Along with my family and friends, we returned to Yale today on a happy occasion.  No MRI, no office visit – instead, we went with a check in hand with the net proceeds and I am ecstatic to share with you that, this year’s donation was $37,250.00!img_1526

As I handed over the check and in my remarks, I had a moment of reflection.  As I told Dr. Piepmeier and his fellow neurosurgeons, as well as the staff at the Yale Brain Tumor Center, but for them and without their support and care for me, as well as the assurances provided to my family, I would not be here and my family would not be giving their time year after year to raise money to support their research efforts.  It truly is a labor of love.  “Its a full time job, the work’s never done.  Twenty-four seven, it’s a labor of love.”

I have said it before, and I’m going to repeat it here.  But for our sponsors and all of those who contributed and helped to make this year such a success, today’s donation never would have been possible.  Thank you again to our sponsors – ShelfSpace Marketing, LLC, Carla’s Pasta, Specialty Packaging, Beirne Wealth Consulting, Edge Technology Services, Stop and Shop, Unitas Club, Sardilli Produce, iHeart Media, Henry, Raymond & Thompson, LLC, Liuzzi Gourmet Food Market, Guida’s Milk and Ice Cream, The Farmer’s Cow, Severance Foods, Updike, Kelly & Spellacy, P.C.,  Blum Shapiro, Al Mac Motors II, Channel 3 and WTNH.  A huge shout out to Stony Creek Brewery for not only working with us to make this event run so smoothly, but for your extremely generous contribution toward the fund.  And to every single person who came out to share in the night and celebrate with us as we raised money to  help find the cure, thank you.

Going into 2016, my goal was $20,000.  But by early June, after the sponsorship letters were sent out and the checks started rolling in, I upped the goal to $25,000.  Yet never did I imagine, or envision, being able to hand over this sum of money, but let me tell you – I am so proud to do so, and cannot express how grateful I am for each and every one of you!

Today, Dr. Piepmeier shared his continued plans for use of this money, and this includes investing this money into various research projects that he hopes will lead to breakthroughs in treatment options, as well genetic testing.

Together, with the support of the Yale Brain Tumor Center and other facilities throughout the world, the cure to brain tumors will be found.  However, until that time, I remain committed to putting together this fundraiser for Yale as a way of saying “thanks” for saving my life and giving me a second chance at living.

I am forever grateful for my family and friends who got me through these dark days and allowed me to pick myself back up and continued on with my life.  But I am also thankful that you have helped me to explore and find my passion, and that is being an active part of the brain tumor community.

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