Tag Archives: CTBTA

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.

Empty Chairs At Empty Tables

Despite how well I have been feeling of late, I cannot help feeling guilty.  Yes, I have survivor’s guilt.

2015 has been particularly difficult.  Whether it has been through social media or the evening news, we continue to hear about the tragic stories of those newly diagnosed.  And just during the  past couple of months alone, the Connecticut brain tumor community has lost two courageous warriors.  Through my involvement with the CT Brain Tumor Alliance, I am surrounded by stories of heartbreak and triumph.  Recently, I told you about Martin and Candice, two individuals who I had met through my involvement with this organization and I am proud to say that I live a better life because of the two of them.   With a smile always on their face, they never allowed their diagnosis to bring them down.  Unfortunately, both lost their battles to their horrific disease.  Yet, I am still here.

I wish life were different.  The questions haunt me: why does someone with a benign tumor like the one I had, have such a different recovery and prognosis than I?  Why was my tumor benign while another person’s was cancerous?  I wish I had answers to these questions and as to why I am okay compared to others.  However, these are questions which nobody can, or ever will, be able to answer.  My pain and sadness for the victims and their loved ones makes me want to fight harder for them.  I often remind myself how lucky I am, but it does not take away the somber reminder of those who are less fortunate.  I am attempting to turn my tragedy into a positive.  If nothing else, it has allowed me to gain an entirely new perspective on life and what is truly important.

My role as a Director of the CTBTA becomes that much more important to me and I feel the pride when the Board goes to the various hospitals and research centers to present checks.  These monies are used to better assist research and treatments; to allow children to get into MRI machines without being scared; and providing for patient-assistance funds.  The opportunities that the hospitals are to present from our hard work brings a smile to my face, providing reassurances that I am taking part in a greater change for something good.

Nonetheless, I am quite certain that I will always be haunted by survivor’s guilt.  Saying goodbye to an acquaintance with this diagnosis will get harder and harder.   However, I believe that the best way to honor those who have passed from this disease is to continue fighting in their honor.  To try to bring something good out of this experience.  So when I hear about someone with a more difficult prognosis than myself, I will always be reminded by a sense of gratitude from my recovery and how far I have come to fight on in the memory of those who have passed.

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.

April Showers Bring May Flowers

I know I’m a few days late, but it’s May and May is Brain Tumor Awareness Month!  For the patients, survivors, caregivers, friends and families, this is our month to be heard, raise awareness and bring a much needed voice to the brain tumor community.

There are some great campaigns taking place during the month and lots of awesome people who are dedicated to raising awareness.  Maybe you’ve heard of various sporting teams wearing “grey” uniforms to show their pride, or perhaps have been involved in or seen flyers for walks being held this month?  These are both wonderful opportunities for the much deserved and appreciated recognition.  I’ve also seen friends on social media posting pictures of themselves in a different grey outfit each day – very cool!  It’s these simple things that bring a smile to my face to know that this cause is so well cared for and there are many individuals and businesses out there trying to make a difference.  Even my dog got in on the party showing off his #beaniesforbraincancer! IMG_1629

All of this got me thinking – what can I do to show my pride and make a statement?  And then it came to me.

As I was sitting in the chair getting my haircut with my barber doing his final touches, I told him it looked good, but asked him if he would buzz the top too.  “Are you sure?” he asked.  I replied, “yes, I’m positive.  It’s brain tumor awareness month and this is my way of showing pride and support.”  As he began buzzing it, a voice piped up from another shaved-head person: “Sorry, but why did you decide to buzz it after getting rid of the old style?”  I explained to him, and the rest of people waiting for the barber that May is brain tumor awareness month and as a survivor, I wanted to do something to show my pride and support.  Looking in the mirror, I saw nods of approval and smiles, and then I was asked whether I would consider one of the barber’s already-shaved head as support of my effort.  I have no shame and I’m not embarrassed to show the world my scars – my battle wounds.  DSC_0402Fortunately, losing my hair is one thing I’ll likely never have to worry about – thanks Mom.

So what are you willing to do for the rest of this month to show your support?  You can wear the grey CTBTA bracelet or purchase Broca’s Area CD to help raise money for the CTBTA.  There are so many ways to get involved and help out, many of which would not require you to leave your couch.  Come on and join the party, you know you want to!

Listen To The Music

Raising awareness and spreading hope – these are the two things that, as a brain tumor survivor, I hope to accomplish these days.  As I wrote about in a previous entry, Broca’s Area, a fusion/hip-hop band had their CD release party this past Thursday.  A packed house came to watch the band debut their album titled Clarity.  The night was full of great music (take a listen to Space, one of their original singles), an amazing live drawing 10647130_812098832172320_2219110831019678840_ncapturing the night’s vibe and a laser show.  It was a wild Thursday night (for me, anyway). Despite all the obvious revelry, the intangibles stood out to me most.

Over the years, it has become abundantly clear to me that my story is not only mine; I have shared every step of this journey with my family.  It was them who watched me spend weeks and months in the neuro-ICU and rehab.  It was them who nursed me back to health.  And it is still them who support me through every moment.  Words cannot express the pride I feel when I see how everyone has taken something so terrible and turned it into something positive.

When my brother Stephen came to me with the idea of donating a portion of CD sales to finding the cure and helping better the lives of those in need, I was honored and knew just where to turn.  One day in 2014, I was home exploring ways to connect with other brain tumor patients and advocates, when I happened upon the CTBTA website.  Within days of filling out a contact form, I was having coffee with the Executive Director and another Board member, sharing my story and ideas.  They welcomed me with open arms.  From that moment on, I have felt a renewed sense of purpose.

For me, the night was such a beautiful melding of my family who has been there from day one, friends and the family I’ve found in the CTBTA.  The pride I felt watching 11091202_812101065505430_9171527113053482358_nmy brother and his bandmates killing it on the stage was almost overwhelming – knowing how much work went it to this, not only for themselves, but for others is a true testament to how much we can accomplish. 11051865_812100148838855_6420674188541795924_nTo everyone who purchased a CD at Black Eyed Sally’s, or who purchased one previously or since then, we thank you!  To my new friends at Carla’s Pasta who have shown tremendous support and generosity, we thank you.  Because of all of you, finding effective treatments and the cure to brain tumors and brain cancer can someday be made possible.

Equally as exciting as watching the show was witnessing the spirit of my fellow survivors and caretakers.  As has been discussed over and over on this blog, a brain tumor diagnosis is devastating for the patient and caretakers.  But with strong spirits and perseverance, any obstacle can be overcome.  I send a big thank you to Susan, David, Tracey, Greg, Maria and Kim for being there with us on this special night.  Your enthusiasm and support are the reason that I volunteered and am now a board member of the CTBTA.  The passion that you have for this cause is unbelievable and inspiring.  Each of our stories is special and unique in their own way, but we are all connected by one common denominator.

For Stephen, music and this band were his clarity during a tough time.  For me, family and realizing what truly matters in life is my clarity and what gives me the drive to carry on and succeed day-to-day.  As I’ve explained before, music has also served as my clarity.  And as you may or may not have noticed, I write these posts based on music and songs.  So in case you missed it, mark your calendars for September 19th and join us for the Second Annual Give Back Music Festival: Brainstormin’ to benefit The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.  Let’s continue to focus on the good – let the music, laughs, and some cold beer bring some clarity to and hope for this devastating illness and those living through it.

A Bottle Of White, A Bottle of Red, Perhaps A Bottle Of Rosé Instead?

I’ve talked a lot about the value of support groups and the impact that friends can have on your recovery along the way, but what I have yet to do, until now, is to provide some insight on my new group of friends and support – the people that make up the Connecticut Brain Tumor Alliance (CTBTA).logoAs some background, the CTBTA was founded in 2006 as a 501(c)(3) non-profit organization.  The organization has raised over $1.5 million for brain tumor research, “Patient Assistance Funds” for families in financial need and specialized medical equipment for improvement treatments.

As a non-profit organization, the CTBTA is dedicated to offering support and compassion to those affected by brain tumors.  Each member of the Board has a very personal connection to brain tumors as we are all survivors or caregivers.  As a group, our mission is to “to raise awareness of brain tumors, provide hope and support for others affected by brain tumors and raise money to support and advocate for cutting-edge research for better treatments and a cure.

Proudly, I am one of 13 Board members and together we collaborate to better the lives of those afflicted with a brain tumor.  As the new guy in the organization, I cannot profess that I know everything there is to know, but I have witnessed the dedication of every board member in their efforts to hold events designed to promote awareness and raise funds to research the cure.  And as a non-profit, we work to raise money and donate proceeds raised during  our events in support of various organizations with one goal in mind – to find the cure.  The CTBTA has proudly supported various entities including the Yale Brain Tumor Center, Hartford Hospital, Saint Francis Hospital and Medical Center, the Connecticut Children’s Medical Center, Voices Against Brain Cancer and Weill Cornell Medical College.  What an honor to be a part of something so rewarding.

Though the diagnosis of a brain tumor or brain cancer is certainly scary, as an organization, we certainly know how to make it fun.  Throughout the course of the year, the CTBTA holds numerous events including a golf tournament, a trivia challenge, the Path of Hope (a 5K walk held at Hammonassett Beach State Park), Laughter on the Brain and the Wines of March to be held on March 14th from 7:00-10:00pm at the Mark Twain House.  The link includes all the details that you need to know, but to wet your appetite, Cassidy Hill Vineyard of Coventry is providing the wine and Shebeen Brewing Company of Wolcott is providing the beer!

We do so many great things, but what makes the CTBTA stand out in the world of non-profits is our personal connection to the cause and commitment to bettering the lives of those in need.

You can learn more about our organization at http://www.ctbta.org/.

Let The Music Do The Talking

With everything now behind me, I can now look forward to everything else in store for 2015.  And today, I wish to share with you the early details for our second annual Playing for the Cure: Brainstormin’ benefit concert for brain tumor research.

My mission and goal is simple – I want to spread the word on brain tumors to educate with the hope that my story gives hope to those who are awaiting treatment or currently recovering.  I hope that through this blog, our concert, through The Cusano Family Fund to Benefit Brain Tumor Research (a non-profit corporation which I am working to establish for the benefit of the Yale Brain Tumor Center), and through my work with the CTBTA, awareness will be brought to this very important cause and money will be raised to assist doctors and researchers in finding the cure.

So, mark your calendars for Saturday, September 19th!  My family and I are pleased that The Ballroom at the OuterSpace in Hamden, CT will again be hosting the event and hope to surpass what we did last year.  We hope that you will come enjoy the music of Broca’s Area and other great acts with one common goal in mind: raising money to aid in finding the cure.  Details regarding the event time are still being worked out and will be announced as soon as it is known.  Rest assured though that there will be great lineup of acts and of course, food, drinks and raffles.

My brother Stephen formed Broca’s Area with his classmates at the Hartt School of Music and they have some great things happening right now.  On March 26, 2015, there will be a CD release party at Black Eyed Sally’s in Hartford beginning at 9:00PM.  The album contains five original compositions, all of which I’ve had the privilege of hearing and each song is better than the previous.  

With you, together we are making a difference in the lives of those who are living with a brain tumor and the survivors.  But as a family, we wanted to do more.  So for every CD that Broca’s Area sells, a royalty will be paid to the CT Brain Tumor Alliance (the “CTBTA”).  The CTBTA’s mission is “to raise awareness of brain tumors, provide hope and support for others affected by brain tumors and raise money to support and advocate for cutting-edge research for better treatments and a cure.”  Please come to Black Eyed Sally’s to support the cause and help in this fight!

I am very pleased in witnessing how my family has rallied around my battle – for being able to take something so terrible and turning it into something positive.  Some people tell me that I am inspiration, but if not for my family and the care that I received along the way, none of this would be possible.

Better Things

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

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

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

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

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

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

Tears in Heaven

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

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

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

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

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

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