Monthly Archives: October 2015

Empty Chairs At Empty Tables

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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.

Turn the Record On, It’s Time For Something

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

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

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

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

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

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

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

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