Tag Archives: CTBTA

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.

You’ve Got A Friend In Me

In the past week, I’ve done some thinking.  Okay, that’s a lie – I’ve done a lot of thinking.  Mostly about that bright spot on my MRI and what it could possibly mean.  Is it tumor activity or is it radiation necrosis?  Only time will tell so until December, I must let it go and move forward with my life.

And as I move forward and try to put my ordeal in my past, I have become involved with the Connecticut Brain Tumor Alliance (CTBTA).  As you saw in my last post (The Path of Hope), I am now a part of the CTBTA.  This past year, I reached out to the organization because I wanted to help, wanted to share my story and do what I can to better the lives of those who are suffering today.   A brain tumor can be debilitating but nobody should have to suffer through the ups and downs alone.  What’s more is that with the collective efforts of enough people passionate for this cause, together we join forces to raise awareness and to find the cure.IMG_0711

Sure, I went to law school and earned my law degree.  But my battle with my brain tumor has left me unable to pass the bar exam and for reasons that I previously discussed and now dealing with the bright spot in my brain, I would not even contemplate trying again.  More importantly though, working within the brain tumor community to provide support and provide fundraising efforts to finding the cure is my passion.  As a result, the sting of defeat four years after graduating and still being unable to practice law has been tamed and honestly, I am okay with how my cards have been dealt.

I am constantly being told that I am always smiling, always pleasant.  Even on those days where everything goes wrong and I just want to scream, I take a step back and reflect on how fortunate I am.  When you go through a life event such as what I went through, or any person with a life-threatening illness for that matter goes through, you realize how great life truly is.  For me, I realized this years ago and finally chose the CTBTA as the organization that I would involve myself with to share my life experiences and enjoy the same semblance of happiness with fellow brain tumor survivors.

Not only did the diagnosis scare me.  It also made me more aware of life and how we should live.  It made me smarter.  It made me brighter. Literally and physically.

The Path of Hope

Today was the “1st Annual Path of Hope: A 5K Journey To Benefit The Connecticut Brain Tumor Alliance” at Hammonasset State Park. Despite my MRI results this past Friday,  the sun was shining, the air was brisk and the atmosphere was great and it was a reason to celebrate.  I felt so fortunate to be surrounded by my family, friends (both old and new) and to talk with other brain tumor survivors, patients and caregivers on this day.  When I see families like mine and hear of stories similar to what I went through, it gives me a sense of knowing that our everyday problems that we complain about are not so significant.  It was a great day and I am happy that I got involved with such a great organization.

I served on the Walk Committee and was asked to say a few words and offered the opportunity to play my song, if I wanted to.  I was honored and humbled by this offer and was very happy to share my story with others to serve as inspiration and hope for those undergoing this terrible diagnosis.

Fortunately, Ashley captured the moment on video and I am sharing it here.  Ironically however, my song was “interrupted” yet again.  Enjoy!