Another fun Cusano family vacation to Nantucket is in the books!
Whether it was on the beach, out walking around town, paddle boarding (yes, I did it!) or at Cisco Brewery, I was happy and carefree. It is great to just wake up with no pressures – no phone calls or emails to respond to, no meetings to attend. I definitely need to reward myself and take advantage of the time that I am afforded to do this more often.
However, I’d be lying if I did not acknowledge the moments where my mind wandered and I caught myself thinking about the past and the adversity I have overcome to get here. It wasn’t feelings of sadness or depression, but rather, joy and jubilance. If you had told me back in 2008 I would be riding a paddle board in the ocean, traversing through massive yachts, I would have told you that you were nuts. For the past nine years, nothing has been perfect – be it law school, the bar exam, seizures, weakness or more surgeries. Yet, this week was an exception.
All of this made me realize that everything in life is in flux and nothing is permanent. I watched the waves rush in and then wash out. Ferries dropped people off and then came back to pick people up to bring them home. As I sat on the ferry home, I realized that nothing is constant – we cannot bottle up good times and moments to take them home, but we can certainly savor them.
I said it earlier, and I’m saying it again – nothing in life is permanent. While this may sound negative, it is not because it is reality. Just like life on the island, everything comes and goes. The good, the bad, you have to just keep paddling.
As I learned at an early age, life is short and should not be taken for granted, so live it up.
“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.
“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!
Here 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
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!
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.
Last week, over 700 brain tumor patients, survivors, caregivers, family, friends and doctors walked and ran in the Path of Hope, a 5K to benefit the CTBTA. As with all events, there were obstacles to overcome but that did not stop us. The new venue worked perfectly and I heard many great compliments. Additionally, we were faced with another event taking place on the same day and at the same location, but this too did not make an iota of a difference to our dedicated group of volunteers who adjusted to each punch thrown. I saw determination and a desire to make this event just as great, if not better, than the previous two years. Proudly, we can say, that goal was accomplished.
We had an impassioned speech from our President Emeritus and a beautiful rendition of the National Anthem. New this year was a true 5K timed run to give those who wanted that experience and it was a success. The walkers were located within the confines of the village and as each team came around the turn, I saw nothing but smiles, belief and hope.
The most incredible part of the entire of the day was witnessing the brain tumor community come together, and it is truly awesome to witness. Never could I have imagined that there would be this community, let alone people who wanted to come together and celebrate their journey in what they have overcome or are currently facing. Whether it was meeting Elli Haskes, a fifteen year old student whose mother passed away from brain cancer when she was five and who set up a table to collect items to create care packages for children whose parents have been diagnosed with a brain tumor, or Steve, an inspirational survivor whom would never let on that anything was wrong, and his caregiver Wendy, who radiates with positivity. And to greet all of the patients and survivors, there was Supercow, the very animal I named in the hospital when my parents asked me who my dog was. The handshakes, hugs and tears we exchanged are moments I will not forget and are the reason that I do this. Thank you all for being there.
When I think about all the time and work that went into the event by everyone involved, it was all worth it as I saw the joy that it brought to everyone. The day was about raising awareness of brain tumors and doing our part to help find the cure. It sounds odd, but there is truly something special when you have the chance to actually celebrate brain tumors with an amazing community of people whose lives have been affected by this awful disease.
Whether your tumor is malignant or benign, it is still a brain tumor and the effects are equally as devastating. The best advice that I was given, and which I now give to you is simple.
Take it “one step at a time.” There is not a day that does not go by where I do not think about it, or reflect upon how grateful I am, but to Ashley, my family, friends and all supporters – thank you for all you have done, and continue to do for me. You have allowed me to take this and turn it into something great, and I am grateful.
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.