Tag Archives: Yale – New Haven Hospital

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“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!

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.

Oh What A Night

The third Playing for the Cure: Brainstormin’ is in the books and has truly set the bar higher for the future of this event.  There is so much I want to talk about that it is difficult to determine where to begin.  I know the number one question everyone wants answered is “how much was raised?”  While I wish I could tell you, donations are still trickling in and the final accounting has not yet been completed; however, I am ecstatic to share that we have shattered the amounts donated the first two years!  Thank you to each and every person who attended, bought raffle tickets, participated in silent auction, partook in the live auction and my lucky cousin Xander, hope you enjoy that scooter!  A big thanks to you all!

The night would not have been possible without our annual sponsor ShelfSpace Marketing, LLC and our presenting sponsors Carla’s Pasta and Specialty Packaging.  I was, and still am, in shock by what I witnessed.  The lovely and wonderful Carla Squatrito, the Founder and President of Carla’s Pasta, surprised my family and I by chartering a bus of 40+ people to the event.  Words alone cannot express how grateful and surprised I was for this support, and I know that I speak for my family as well, how greatly appreciated and generous this gesture was.  Also joining us was Chris Orsini, the Managing Partner of Specialty Packaging, along with his wife, Linda. To both companies, I cannot express my sincere gratitude in helping to make this year the success that it was and for your show of support of this cause and dedication to helping find the cure.

Thank you 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: you made this night possible and are giving hope to those battling a brain tumor diagnosis.  And to every single person and company who donated an item for the raffle or auction – THANK YOU!  Also, a huge thank you to Jillian Shugrue who reached out to me and donated her photography skills and time to photograph (and video) the evening – you did an amazing job!

But what would the night have been without the music from the talented duo Ja2M and the awesome Wise Old Moon?  Your time and skills were so greatly appreciated and I only hope that you enjoyed yourselves as much as everyone enjoyed your sounds.  I hope it was evident from looking out into the crowd how much the crowd enjoyed you guys – I received many great compliments on both bands, so hats off to you!  When I think of the future of this fundraiser, I have longed for a true “festival” with multiple bands and styles of music and you both got the ball rolling in that direction.

In addition, I’d like to thank and recognize Stony Creek Brewery, our host and tremendous partner in this fundraiser.  I am humbled by your support and willingness to partner and work with us throughout the planning stages to the day-of coordination.  Additionally, I would like to thank Ed and Ali for their extremely generous contribution during the month of September.  You took me by complete surprise when you informed me of Charity Wednesdays for the month of September and never could I have imagined such a generous contribution and act of kindness.  You were both so accommodating and great to work with –  I thank you again, and look forward to next year.

Last but not least, and most importantly, a BIG thanks to the Yale Brain Tumor Center and especially, Dr. Piepmeier.  As noted in his remarks, the morning of the concert, Yale went live with its new addition to the website intended to educate patients, survivors, caregivers and families.  The addition of Brain Tumor Patient Education consists of a wealth of links and information put together by doctors, nurses and myself to assist and guide anyone diagnosed with a brain tumor, or their family, through this long journey.  When I was released from the hospital in 2008, I had nowhere to turn nor anybody to talk to about what I was feeling.  As I told the staff at Yale, they needed to give patients and families a place to turn to for answers to questions such as “where do I go from here?” and to provide them with an assurance that they are not alone and provide resources, and “Life After a Brain Tumor” should give some insight.  Collectively, you all changed my life, as well as that of my family, and I could not be happier than to host this fundraiser for you.  I am excited to discuss with you how you plan to use the money donated this year and what breakthroughs you think may be on the horizon, while further enhancing the website.

However, for me, the best part of the night was seeing and meeting fellow brain tumor warriors and survivors and their families.  To be able to put a name to the face, or to meet someone for the very first time and hear their story and let them know that they too can get through these hard times is all that I strive for.

Fortunately for me, I am now cured of this tumor but that does not mean my battle against brain tumors is over.

It is just getting started…

See You In September

FullSizeRender (3)Goodbye summer, hello fall.  And as much as I enjoy summer, September is my favorite month – our anniversary, the start of Fall and cooler temperatures, football season, autumn leaves, etc.  But fall also means that winter is just around the corner and that truly depresses me,   UGH!  So I look on the bright side – Brainstormin’ is just 15 days away!  I would be lying if I said that I was not excited about what lies ahead in the immediate horizon, and in the coming months.

Tomorrow night, the CTBTA is hosting its second annual Night of Hope, a farm dinner at the beautiful Rosedale Farms & Vineyards in Simsbury.  I have been to several farm-to-table dinners and by far, this was the best one I had ever been to, so the expectations for tomorrow are high!  Also coming soon is the new website for the Yale Brain Tumor Center, which was a collaborative effort with nurses, care coordinators and doctors at Yale.  Not long from now, this new website will be revealed and hopefully be a tool and be a resource for brain tumor patients, survivors and caregivers.  Next week, the CTBTA reconvenes its business and we’re hosting brain tumor patients, survivors and caregivers for Brain Tumors and Cupcakes at NoRA’s Cupcakes in West Hartford, CT.  We’ll also meet as a board to make our allocations to hospitals and brain tumor programs throughout the state.   Then, in October, we’ll be walking on the Path of Hope, in a new location this year (Olde Mistick Village).

And of course, Brainstormin’ on September 16th.  As some of you already know, we received another great surprise earlier this week when the owner of Stony Creek Brewery informed me of Charity Wednesdays at the brewery.  To put it simply, every Wednesday, the brewery donates $1 per every beer sold to a designated charity.  The idea proposed by Stony Creek was that, during the entire month of September, every Wednesday’s charity night would be designated to the Yale Brain Tumor Center to assist our fundraising efforts. Humbled and appreciative, I graciously accepted this idea, but more than anything, I am proud in knowing that the work I am doing is not going unnoticed.  To be able to help the doctors and staff who saved my life so they can continue to develop research and continue saving lives means more than anything, and to see the generosity of businesses and individuals wanting to contribute is awe-inspiring.  As I told Yale when I shared this news, never did I think that eight years ago, I would find anything positive in this whole experience, but everyday I continue to be amazed and inspired.  Thank you Stony Creek Brewery for joining us as a partner in this quest to find the cure!

Thanks to all of our corporate and individual sponsors for your support.  We are close to this year’s goal and remain hopeful to hit and surpass it, but we can still use your help.  It is a night that you will not want to miss, so contact me for your ticket before they’re gone.

I look forward to seeing all of you on the 16th and encourage you to help find the cure by visiting Stony Creek on Wednesdays during the month of September.  I also look forward to seeing you at some of our upcoming events as well!

Cheers!

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The Best Is Yet To Come

Hope that everyone has been enjoying their summer, whatever you may be doing.  But with the end of summer getting closer and closer, that means September is nearing.   However, September brings Playing for the Cure: Brainstormin’ fifty days from today!2016 Poster

Thanks to all of our sponsors (special thanks to our annual sponsor ShelfSpace Marketing, LLC, as well as our presenting sponsors this year, Carla’s Pasta and Specialty Packaging), family, supporters and the committee assisting us this year, I am excited to announce that we have already surpassed the amount donated in each of the previous two years!  With an exciting new venue, two great new bands and a tremendous raffle, the excitement is hard to contain.  As you know, we are holding the concert in the celebration room of the Stony Creek Brewery.  Gone are the days of drinking Pabst Blue Ribbon and on to their craft brews.  And if beer is not your thing, they serve wine too.  If you think you might be hungry, worry not because this year, we are including a $10 food voucher!  Every weekend at the brewery, they have local food trucks come, so there will be something for everyone.  The brewery has been great to work with and I am excited to see our event come to life there!

As mentioned in a previous post, our bands this year are Ja2M and Wise Old Moon.  These bands are the perfect fit for this venue and are sure to please everyone in attendance.  In addition, we have a tremendous raffle and auction full of awesome items donated by sponsors, friends and colleagues.  Just to name some, we have two raffles: one for our grand prize, a 50cc gas street scooter, and the other raffle contains prizes such as a foursome of golf to play a round of 18 at one of two courses at Lyman Orchards, tickets to the Goodspeed Opera House, tickets to a UConn men’s basketball game, gift baskets, gift cards and many more.  Some of our auction items include an Eli Manning autographed jersey and a dinner for eight at the winner’s house prepared by the chefs at Carla’s Pasta.

But most importantly, by coming or making a donation, you will be helping doctors, surgeons and researchers find the cure for brain tumors.  To help a family and spare someone else having to go through what my family and I went through is what this is all about.

I’m not one to ask for much, but please, support this cause and come join us for a beer, some good tunes and some great food at the Stony Creek Brewery!  Hope to see you in 50 days!

For tickets, email me at chrisgreymatters@gmail.com

Can’t make it, but still want to contribute?  Visit http://www.cusanosagainstbraintumors.com

I’m Walking on Sunshine

Today, I walked into Yale New Haven Hospital for my six-month MRI feeling anxious and a little uneasy, because, after all, it is Friday the 13th.  However, deep down, I was confident because I have the best surgeon ever, and I walked out the happiest man on the face of the Earth.  And after eight long years, five operations and one gamma knife surgery, the stars have aligned and it appears that I am now DONE battling my brain tumor!

You pick the adjective – relieved, ecstatic, thrilled – I’m it.  Today’s scans showed nothing, other than a normal looking brain.  Sure, my neurocytoma might have given me a battle at times and it even attempted to break me, but, I win.

I honestly don’t know where I would be if not for Dr. Piepmeier and the staff at Yale.  For a quarter of my life, I have relied on him as my surgeon, allowing him to use scalpels and God only know what else inside my brain, but he has also been a friend.  He has supported me in everything I have done, including rehabilitation, my pursuit of my juris degree, my attempts at the bar exam, supporting my family’s fundraiser and creating a fund at the Yale Brain Tumor Center for us.

The gravity of this morning’s news has not quite sunk in yet, but I know it will.  Ever since I was diagnosed and survived, I knew I had a new lease on life, but this news serves as the assurances I have longed for.GR4ZD00Z

I am not a survivor, but rather a warrior. I overcame some very scary days, but I am alive and able to share my story.  So, I am going to give back and continue advocating for the cure and fundraising to help the doctors and researchers who saved my life.  I would never have imagined that I would take this entire experience and turn it into something good, or into something that I even want to discuss, but it is a cause I care so deeply about.  I want to do as much as possible to help find the cure to brain tumors, and bring hope to the warriors battling.

Thank you family and friends for your continued support and reading about my journey – I cannot wait to see what lies ahead for me!

Someone Saved My Life Tonight

Okay friends, it’s March already and that means Playing for the Cure: Brainstormin’ is quickly approaching!

Through the Musicians of North Haven, fundraising is underway for a benefit concert at Stony Creek Brewery on September 16, 2016. In partnership with the Yale School of Medicine, I am pleased to share with you that all donations are now tax deductible.   As in the past two years, one hundred percent 3e7dd804-0f3c-469d-9f2c-7fb03c8d7b08_w744_h420of the profits will be donated to The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.

First things first though – I’d like to answer a couple questions I often get asked:

What exactly is The Cusano Family Brain Tumor Fund?   The concept of the fund was first  announced by my surgeon during our first Brainstormin’ concert in 2014.  For the previous three years, Stephen and his friends performed concerts on the North Haven Town Green and donated the money raised to the town’s music department.   After the 2013 concert, Stephen and my family approached me with the idea of doing a concert for the benefit of Yale and as a way of saying “thank you” for my renewed lease on life, and I was in total agreement.  I did some thinking and researching of my own and came across the Nora Brignolo Fund.  This fund was managed by my surgeon and used for research and the development of clinical trials for brain tumor patients and within no time, we decided to organize a concert and give the money to this fund.  However, as this video evidences, the donation to the Nora Brignolo Fund turned into a donation to The Cusano Family Brain Tumor Fund and none of us has ever looked back.  My family and I have continued to earmark all of the profits from this concert to Yale because, very simply, my surgeon saved my life and without his care and the support of the many doctors at Yale, I would not be here.  I am forever grateful for the care I received and our goal is to help others fighting this difficult diagnosis.

How are the donated funds used?

One hundred percent of donations to The Cusano Family Brain Tumor Fund are given directly to the Yale Brain Tumor Center and are under the care of Dr. Piepmeier.  Your donations go toward research, namely better understanding particular types of tumors and their patterns for incidence, but also toward an educational undertaking for patients and their families.  I am pleased to share that I am collaborating with the Yale Brain Tumor Center on a educational effort to be featured directly on Yale’s website.  It is our collective hope that this effort will give patients access to new findings, but also to help the patients and their families to better understand their disease.   As a donor, you will have the ability to visit the site and learn about what your dollars are providing, and I cannot wait to share that with you all.

So, with that background information, the details! 

This year, in addition to the venue change, we are excited to have two new bands join us, one of which Stephen is the drummer in.  The first band, Ja2m, is a duo headlined by Jonathan Moore and Aaron Mannes.  If you were at my wedding, you will remember them singing “I’ll Be” as Ashley walked down the aisle or while they entertained everyone during cocktail hour, and we could not be happier to have them back with us.  Their style of music is fun and will certainly offer something for everyone.  The second act is Wise Old Moon, an Americana band from right here in Hartford, Connecticut.  Proudly, we’re keeping it in the family once again as Stephen is their drummer.  It is perfect music for an end-of-the-summer night overlooking the water.

Hopefully you already have it marked down in your calendar, but if not, save the date for September 16th for what will be the best year yet!  My family and I are so excited to hold this concert again and hope that together, with your support, we’ll help the doctors at Yale save another life.