The Me That Remains

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Eighteen years ago today, my journey with a brain tumor began.

How is it possible that this much time has passed, yet it still feels like yesterday? I’ve said it before and it remains true today: if I only knew then what I know now.

When I woke up after surgery in 2008, I was eager to begin the recovery process and return to being a normal 24-year-old guy. I had no idea that I would need to recover cognitively, physically and emotionally. I certainly never imagined that one day I’d reinvent myself at the helm of the CT Brain Tumor Alliance.

Like so many people facing a brain tumor diagnosis, I spent years asking myself the same question: Am I doing enough with this second chance?

The answer didn’t come overnight. Rather, it came through people.

Over time, I’ve learned that while brain tumors can make you feel incredibly isolated, healing is rarely something you do alone. It happens because people show up. Sometimes they’re family. Sometimes they’re lifelong friends. Sometimes they’re doctors, nurses, therapists, coworkers or complete strangers who somehow become part of your story.

This past weekend, I experienced that once again.

Earlier this year, when Gary Woodland shared his journey as a brain tumor survivor and spoke openly about his battle with PTSD, I immediately felt a connection. As someone who also struggles with PTSD, his words resonated with me in a way that’s difficult to describe. He put into words emotions and experiences that many of us carry but often struggle to explain.

Meeting him in person was a reminder that some of the strongest people you’ll ever meet are the ones who have faced challenges that no one else can see. Gary is an incredible golfer, but after spending a few minutes with him, I can say he’s an even better person.

I hope that by sharing a little of my own journey, offering a few words of encouragement and giving him some CTBTA gear, I was able to remind him that he isn’t alone – that there’s an entire community standing beside him. As I drove home, I realized that’s exactly what so many people have done for me throughout my journey.

I think about all the people who refused to let me settle for anything less than I was capable of becoming. Every single one of them has played a part in this journey and helped me heal.

A week ago, my aunt mailed me Amy Grant’s new album along with a note. It’s Amy’s first album in thirteen years, following the traumatic brain injury she suffered in a bicycle accident in 2022.

As I read about the story, I couldn’t help but notice the similarities. She had lost her balance, had difficulty searching for memories, trouble remembering the lyrics to her own songs and was trying to rediscover herself, all experiences I knew too well.

Listening, one line in particular stayed with me:

“It’s taken me months of days and years finding my way. When I look in the mirror, so much has changed, but I recognize a light in my eyes that never did fade. And I’m gonna find, yeah, find and revive the me that remains.”

That lyric perfectly captures what I’ve learned along the way.

I’m still learning and processing what life throws at me, but the goal was never to become the person I was before my brain tumor, but rather to become the person I was meant to be because of it.

I’m someone different than who I thought I’d grow up to be. Someone who has experienced fear, loss, setbacks and uncertainty. But I’ve also gained compassion, purpose and a community unlike anything I could have imagined.

If I could go back and talk to the 24-year-old version of myself lying in that hospital bed, I’d tell him not to worry so much about figuring everything out.

The people who care about you will help carry you until you can stand on your own again. And now, I have the privilege of doing the same for someone else.

Eighteen years later, that’s what I’m most grateful for.

Vienna

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I’m approaching eighteen years. Eighteen years since the diagnosis that would change everything. Eighteen years of scans, of hospital corridors, of hearing the word “tumor” in ways that make your stomach drop and your world tilt. Today, I am fortunate that my scans are clean and I am healthy, but yet, sometimes I feel like I can’t escape this story that has shaped me so completely. I’ve learned firsthand that even a “benign” tumor is not fine; the label doesn’t erase the fear, the disruption or the impact it leaves behind.

For a long time, I clung to the idea of being “normal,” of picking up the pieces of the life I thought I’d have. Growing up, I had aspirations of the corporate life defined by courtrooms, legal briefs, the thrill of advocacy and justice. But through this journey, I realized that life had given me something else to advocate for – a perspective, a voice and a chance to make a difference in ways I had never anticipated.

It’s a strange paradox: surviving a trauma that you never asked for opens doors to purpose you might never have seen. Over the years, I’ve begun to understand that my story isn’t just about what I’ve endured. Rather, it’s about how I can use what I’ve learned to touch lives, to guide others, to show that strength and hope can coexist with fear and uncertainty.

Even with clean scans, the past is never far away. There are nights when I feel haunted by what I went through, when the weight of memories makes me question if I’m doing enough with this second chance. And then, like a wiser version of myself, I reflect on these lyrics:

“Slow down, you’re doin’ fine
You can’t be everything you wanna be before your time…”

They remind me to breathe. To forgive myself for not rushing, not trying to “catch up” to a life that feels stolen, but rather, to accept that this journey takes its own rhythm.

“Too bad, but it’s the life you lead
You’re so ahead of yourself, that you forgot what you need
Though you can see when you’re wrong
You know you can’t always when you’re right. You’re right.

You’ve got your passion, you’ve got your pride
but don’t you know that only fools are satisfied?
Dream on, but don’t imagine they’ll all come true
When will you realize, Vienna waits for you?”

Ten years ago, I wrote a post that foreshadowed who and what I am today. This summer will mark eight years as staff member for the CTBTA and I am doing all of the things I wanted to, but not in a courtroom or law office. Rather, my days are spent in hospitals, in front of the legislature, with patients and their caregivers, with doctors, nurses and social workers, with community partners and at community gatherings, and I wouldn’t have it any other way.

It’s clear that this diagnosis has left its mark on me emotionally. I’m human, after all, and I do my best to process these feelings, but it isn’t easy when life and work often blur into one. There isn’t a day that passes without hearing the words “brain tumor.”

Still, I hold on to a guiding truth: life is full of adversity, and while we cannot direct the wind, we can always adjust the sails.

Thanks for the reminder and showing me how, Billy.

Sailing

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“If the wind is right, you can sail away and find tranquility.”

It has been seventeen years since I was rushed into the hospital for emergency brain surgery to remove the monster. I had just completed my first year of law school and had my whole life ahead of me.

At 24,  life is supposed to feel infinite. Boundless. Full of promise.

But in an instant, mine felt small. Fragile. Finite.

I summoned my courage and like to think I faced the prospect of what was ahead of me with bravery, calmness and clarity. But the truth is, I had my doubts and was terrified. Not just of the tumor itself and what it would do to me, but of the unknown. Looking back, I was fortunate that I had no time to process what I was about to face – I was immediately admitted and prepped for surgery at the same time the diagnosis was being shared with my family and I. But in the days and weeks that followed, the “what ifs” ran through my mind and the life I thought I was building suddenly became unrecognizable.

Would I ever return to school, as I was in rehab to relearn the alphabet and how to write my name? Would Ashley and my friends all move on as I lay there, unable to communicate? If the results of the neuropsychological exam were really correct, what would I do with my life and who would care for me?

As I sit here today, I can proudly say that, sometimes, the wind is right again.

The past seventeen years taught me that life will be full of ups and downs, highs and lows. Healing isn’t always about an immediate recovery and resuming the things we lost. Finding comfort and hope takes many forms: a good MRI and the calming assurance of my surgeon, laughing uncontrollably at a terrible movie only I’d find funny or having the constant support of my family who never gave up on me.

I’ve learned that you don’t have to be okay every day to be resilient. Back then, I thought strength meant pretending it didn’t hurt on the inside. Now, I know it means trusting yourself to keep going, even when you don’t know what’s on the horizon.

I am doing something with my life I never would have considered, but here’s the lesson I have learned and continue to realize – adversity is painful, but can be the greatest gift in our lives. Our sense of what matters changes and brings immediacy to space for real and true connections and keeps you afloat.

Lately, I have been saying that this diagnosis has, in a very strange way, been the best thing that could have happened to me and I continue to believe that.

I’m not 24 anymore. I’m older, wiser and more resilient than ever. That, in and of itself, is something I don’t take lightly.

I have rebuilt my life into something that includes the tumor, but is not defined by it. I have found purpose in sharing this journey and helping others, whether it has been through this blog, the CTBTA, advocacy or simply telling the truth and being an open book, just as so many did for me.

For anyone that is just starting this journey, or currently in the midst of it, know this: this storm shall pass and there are calmer seas ahead. Hang tight and the wind will come.

“Adversity. You cannot direct the wind, but you can adjust the sails.”

Both Sides Now

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It was a warm summer day in late June 2008 when Mom and I drove to Newport, searching for an apartment for my second year of law school. Beneath the surface, we both sensed that something was deeply wrong with me. Still, I was determined to see this chapter through and become a lawyer—though I had no idea just how much my path was about to change.

I look at my life in two parts: the win and the lose. And when I do, I realize how grateful I am for what I went through.

But for my diagnosis, I would not have had this opportunity to make a difference and lead a life that is so fulfilling. My tumor deprived me of my cognitive functions and eventually, my desire to be a lawyer. In its place, it opened a door to something far more meaningful.

Today, as CEO for the Connecticut Brain Tumor Alliance, I am tasked with carrying out the duties of the board of directors and fulfilling our mission. One critical aspect of this is to raise awareness of brain tumors and to make Connecticut a center of excellence for brain tumor care.

My dear friend Tracey Gamer-Fanning, along with the co-founding members of the CTBTA, worked tirelessly in furtherance of our mission but collectively, we were never able to bring it across the finish line – until now.

An estimated 93,000 Americans will be diagnosed with a primary brain tumor in 2025, and more specifically, in Connecticut, over 1,000 people will be diagnosed and over 200 people will die from this disease. Malignant brain tumors are among the deadliest forms of cancer with just a 35.7% five-year survival rate. Approximately 72% of newly diagnosed brain tumors are benign, but benign is not fine. Though my tumor was “not cancerous,” it still occupied precious space in my head and did substantial damage. There is a certain stigma around a brain tumor diagnosis and for the reasons mentioned above, it is not as celebrated as other forms of cancers.

Pre-law school, I worked for a government relations team, advocating for various causes and clients and this is exactly what I wanted to do with my life upon graduating. Seventeen years later, I did just that — just not in the way I imagined.

Congress first passed resolutions in 2008, denoting May as “Brain Tumor Awareness Month” but Connecticut did not have any laws on the book or resolutions noting the same, so building off the momentum of the National Brain Tumor Society and with our board, I worked to secure a gubernatorial proclamation recognizing May as Brain Tumor Awareness Month in Connecticut. This was a full-circle moment—a monumental success—but just the beginning!

On May 7th, members of our community and I were invited to the State Capitol for “Connecticut Brain Tumor Awareness Day.” A table in the rotunda displayed our mission. Legislators and members of the public stopped by to express appreciation for our work and efforts, but also sharing their own personal connections to this cause. Along with members of our board, our volunteers, patients and survivors, we were introduced on the House and Senate floors, respectively. Their remarks were heartfelt and sincere, bringing immediate awareness to our cause. Over the years, there have been several moments and days that I am proud of, but with certainty, this day was my proudest in my role leading the CTBTA.

A few days later, we celebrated our twelfth annual Path of Hope 5k in Bushnell Park, just adjacent to the capitol building. Thanks to all of you, we had our most successful year, raising over $220,000 with over 1,000 participants. Former teams, new teams, members of the brain tumor community came together for a day filled of hope, love, support and encouragement. I love watching this event grow. Thinking back to our first 5K in 2014 to the present day, it gives me great pride knowing we are making a difference, but there is no room for complacency.

As the month progressed, there was still work to be done on the awareness front and knowing that a gubernatorial proclamation is not permanent, I helped draft language in a bill to codify May as Brain Tumor Awareness Month in Connecticut. Just this past Friday, I witnessed the House unanimously pass the legislation, in concurrence with the Senate. Once Governor Lamont signs it into law, May will be officially recognized as “Brain Tumor Awareness Month” in perpetuity —an epic milestone for all of us.

This was the dream of our founding board members and I’m honored to have helped bring it to life, and I look forward to continuing the work they so bravely began.

Life is humbling — at some point, the things we thought we wanted and the goals we chased change, as do our perspectives. For me, that shift has been a blessing and fortunately for me, this has been for the better.

“I’ve looked at life from both sides now, from win and lose.”

That’s What Friends Are For

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“Keep smiling, keep shining
Knowing you can always count on me, for sure
That’s what friends are for
In good times, in bad times
I’ll be on your side forever more
Oh, that’s what friends are for…”

September 12, 2024 was the perfect night enveloped in love, compassion and courage against the backdrop of hope and strength. For those of you reading this and who attended, sponsored or donated to this year’s Brainstormin’ event, you made the night possible, and I cannot begin to thank you enough.

Had anyone told me, sixteen years ago, that I would be the CEO of a nonprofit that supports the brain tumor community, I likely would have looked at you the same way I looked at my surgeon when he told my MRI showed a massive tumor that needed to be removed the next day. Yet, here I am, stronger than ever and grateful to be in this position of giving back and providing hope to patients and their families, but also supporting this cause that remains severely underfunded and lagging behind other cancers and diseases. Despite the challenges, I have hope and am consistently optimistic that these efforts will pay off in the very near future.

With your help, this year’s event raised over $140,000 and a combined total of over $700,000 has been raised since the inaugural event in 2014! These funds will continue to support programs, such as, patient assistance programs at the various brain tumor centers in Connecticut, brain tumor research efforts, patient outreach programs, medical equipment and awareness efforts. I am humbled and grateful and look forward to continuing to grow these numbers, but what makes me even prouder is witnessing how this event has grown beyond my family and our friends, to now being a true community and statewide effort.

We started this event in 2014, after I needed gamma knife radiosurgery for a growth of the tumor and my continued hardships, as way to simply give back and to support the doctors and researchers that saved my life, time after time. With each passing year, the crowd size grew, and so did the amount. That same year, I participated in the first ever Path of Hope 5K, after meeting Tracey Gamer-Fanning and subsequently being introduced to the rest of the board members and an invitation to sit on the board. 2015 immediately presented me with another surgery, but the CTBTA was there for my family and I – they understood and were a great support system for us, and this propelled me to want to do more for them and this community to ensure that nobody else had to undergo what my family and I had endured in the previous seven years. Thanks to you, we did that, and so much more. Despite all of this, I was committed to pursuing the life I worked so hard for and which I thought I aspired to…

Every day, I remind myself that even though I am not where I thought I would be, I read the quote on the poster hanging in my office and relax, knowing I am where I want and need to be. However, I can’t sugar coat it – this job is hard, as I relive this experience on a daily basis, replaying the harrowing challenges over and over again. Yet, I am grateful for the opportunity to speak with a patient and provide a listening ear or to let them know, I too, was in their shoes, grappling with how I would overcome cognitive and physical deficits. I am grateful to support the hospitals and medical staff who dedicate their lives to treating brain tumor patients and improving the quality of care received by patients and families. Most of all, I am grateful for you, friends old and new.

Thanks to you, I have the pleasure of paying the gift of life forward. At the event, we were entertained all night by the band and with the excitement of the auction and raffle, all of us were there for one common cause – a brain tumor diagnosis. Shortly after moving the event to Stony Creek Brewery, in an unfortunate coincidence, the owner’s mother-in-law was diagnosed with a brain tumor and was being treated at Yale New Haven/Smilow Cancer Hospital. At one of her visits, I received a message from him with a picture of our event poster that was displayed on the door in her wing, along with a simple message of thanks and comfort, as the poster reminded him and his wife’s family that they were not alone in this fight. The event had grown beyond us and its reach was far wider than I could have imagined, but in the best way possible. Each year, through our June Rice Courage Awards, I have the opportunity to meet brain tumor patients, who similarly had their lives thrown upside down. They are incredibly resilient and brave, and it has been my absolute pleasure and honor to befriend them, and this year’s group was no different!

I am already looking forward to repeating this success in 2025 and hope and trust that the event will continue to grow. I hope that you will continue to support this amazing community, as you have done for so many years. We are “stronger together” and I remain excited by what the future holds for this resilient community!

I Won’t Back Down

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Another trip around the sun. But no, not for my birthday.

I view my life in two segments – pre-brain tumor and post-brain tumor and today marks sixteen years since that fateful day…

The date was July 2, 2008 and the day before, my ophthalmologist called my family and I into the office and he shared the devastating news with us. I was immediately sent to Yale where my neurosurgeon and his team were awaiting my arrival. The events were a whirlwind of emotions for us and the team did not pull any punches. My situation was dire and the tumor had to come out immediately. The emotions continued throughout the evening, as I was later greeted in my room by a priest and a nun and instantly, I took pause of my life and immediately went into fight mode, for I had no other option.

Fast forwarding to the present day, I am healthy and well. My annual MRIs continue to show no evidence of disease. My shunt continues to operate as intended and the seizures have remained at bay. To say I am grateful and blessed is an understatement, but it is with thanks to all of my family, friends and this amazing community.

Earlier this year, I was interviewed by Smilow Cancer Hospital for a featured piece on my journey and my current work with the CT Brain Tumor Alliance (the story is accessible through the link below). Over the years, the CTBTA has granted out over $1.8 million to advance research, advance awareness and support patients and families, among other things. Sadly however, in the sixteen years that have passed, very little has changed. The standard of care has remained stagnant and the prognosis has remained the same for brain tumor and brain cancer patients despite the vast advances for other forms of cancers.

At this very moment in 2008, I was in the operating room and woke up a shell of myself. Today, after having regained all of my cognitive functions, I am using my voice to help others through their journey, but we need additional help and my ask if you is this – to please consider donating, sponsoring or simply joining us for Brainstormin’ so that we can continue to move the needle and raise funding for brain tumor research and treatments. There are over 1 million Americans living with a brain tumor and an additional 94,000 will be diagnosed this year, but it doesn’t need to continue to be this way.

This diagnosis changed my entire outlook on life and has humbled me, and as I’ve said before, I would not wish this upon my own worst enemy. But yet, its lesson is simple – stand your ground and don’t back down. And don’t forget the little things, to enjoy life, do something nice for a friend, coworker or a stranger and hug your loved ones and let them know how you feel about them.

Chris Celebrates his 40th Birthday

Lean on Me

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If the final week of May (better known as “Brain Tumor Awareness Month” in our community) is anything like the first nineteen days, we have many reasons to be hopeful and optimistic.

I acknowledge that I’ve been a bit quieter here of late, but as time has gone on and the more removed I am from the day-to-day doctor appointments and visits, the less I have to share about my personal journey. My annual MRI earlier this year was “unremarkable,” which in laymen’s terms is a good thing. I have been seizure free for ten years now and the shunt continues to do what it is supposed to do. I have come full circle and I believe that I am exactly where I am supposed to be and I am humbled that Smilow Cancer Hospital/Yale New Haven Health wanted to feature me in their spring publication, which was published last week. I recognize how fortunate I am and for the care I received, so I was amenable to sharing my story and am proud to share it here.

The CTBTA began the month with a visit to one of our hospital partners and presented a check in the amount of $25,000 for patient assistance funds and brain tumor center support. We will visit another hospital later this week and present an additional $40,000 for brain tumor research, patient assistance and general support. In total, we granted out $175,000 to the brain tumor centers in the state and an additional $10,000 to Healing Meals Community Fund, in support of the Tracey Gamer-Fanning CTBTA/Healing Meals Patient Assistance Funds. This fund is specifically for brain tumor patients and families to provide up to three months of healthy, nutrient-based cooked meals to brain tumor patients and as many as four of their family members, delivered by Healing Meals Delivery Angels at no cost to the patients and their family. Our beloved Tracey would be proud and is smiling down, undoubtedly.

Following our visit, we shifted gears and executed another very successful Path of Hope 5K. Held in Bushnell Park for the first time, this year’s event has raised $155,000 (and counting) and brought hundreds of members of the brain tumor community together for a day of hope, compassion, laughter and awareness.

We took this opportunity to recognize doctors, nurses and some incredible patients for their efforts and courage in facing this disease and having the backdrop of the Connecticut State Capitol behind us, I can think of no better way to raise awareness and have our voices heard. There are an estimated 1 million Americans living with a primary brain tumor and an estimated 94,000 more will be diagnosed this year. With over 130+ types of brain tumors, coupled with the fact that the standard of care for treating a brain tumor has not changed in the past 25+ years, more funding is needed on all levels and the Path of Hope is just one of many ways that the CTBTA is supporting patients, their families and the doctors.

Later in the week, we attended a support group dinner for brain tumor patients and their families, hosted by another of our partner hospitals. For the many patients and their caregivers reading here, you know that experiencing surgery and the days that follow recovering can be scary and difficult, which is why the CTBTA was organized in the first place. We wanted to talk to someone else who also had brain surgery, to ask questions and share stories. Fortunately for you, that has continued seventeen years later and we are still here, willing and wanting to connect. We are fortunate to have great brain tumor centers in our state, many of which operate their own support groups and Smilow Cancer Hospital recently initiated a dinner series for its patients and their families, sponsored by the CTBTA.

The next night, I joined a webinar, titled “Smilow Shares: Brain Tumor Awareness,” an informational and educational segment for patients and families. For anyone interested, I have included the link for you.

Last but not least, yesterday the CTBTA, along with several other organizations attended and participated in the New York Yankees “Brain Health Awareness” initiative – very apropos during the month of May!

I rest easier now, knowing that I am on the other side of this battle and my worst days are behind me, but let me be clear: your fight is now my fight and we’re in this together. Through the CTBTA and this incredible community we’ve built together, we will conquer this disease and I am optimistic that in my lifetime, additional therapies and treatments will be developed from the medical community through a better understanding and knowledge of brain tumors. Until then, and as the talented Bill Withers once said, “Lean on me, when you’re not strong, and I’ll be your friend, I’ll help you carry on…”

I’m Still Standing

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While the memories are distinct and clear, it was all such a blur and in an instant, my life had changed…

The phone rang and someone in the house had answered, it was the neuro-ophthalmologist and he asked us to come in immediately. When we arrived, he wasted no time and pulled no punches.

“Chris, your MRI showed a very large mass in the center of your brain. I’ve already contacted the chief of neurosurgery at Yale NH and he and his team are waiting for you.”

Today marks fifteen years since that fateful day and I have learned so much – about myself, but also about perseverance and realizing that not much else truly matters except for family, health and happiness. I will surely celebrate and enjoy the day, but I’d be remiss if I did not take this time to reflect and express my gratitude for life and all of you.

For far too long, I had taken life for granted. I set lofty goals for myself and was determined to achieve them, but you know the story, life had different plans for me. And all these years later, I now realize and can proudly say that this has been for the better and is oddly the best thing that could have happened to me.

I found my purpose in life and am grateful to wake up every day and help patients and families undergoing a brain tumor diagnosis. Although I am not a neurosurgeon or a neuro-oncologist, I get to take my experience and share that with patients and families in need of support and guidance. I suppose it is therapeutic, but I also think I enjoy getting to use my law degree in a non-traditional way of problem solving and getting good results, be it treatment or financial support. None of this was on my radar in 2008 as I was wheeled into the OR, but life led me to this point.

Through it all, the surgeries, gamma knife, countless MRIs and the feeling of hopelessness and despair, I’ve been blessed to have the greatest support system in my family and friends…I’m incredibly lucky. I still keep in touch with my neurosurgeon, who’s become a great friend to me, as well as the many nurses who cared for me. Again, had you told me this is what would happen back in 2008, I would’ve said you’re crazy. In my office, I have a box of all my stuff from 2008 – the flash cards, ABC board, homework from rehab, my progress reports, etc. Each July 2nd, I open that box and I flip through it all, and while I still laugh at most of homework assignments, reading the progress reports, especially the neuropsychologist’s reports still jars me.

Yet, here I am, stronger than ever.

So today, fifteen years since that dreadful day, I’m still standing and I believe that my best days are yet to come. I don’t have a crystal ball to know what life has in store for me next, but I know that because of this journey and all of the remarkable people who have played a part, “I got this,” just as I said to my family that ominous morning fifteen years ago.

Come Sail Away

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My apologies. It’s been a while since I’ve posted, and this has been intentional. I realized that I’ve just needed some time to unplug from this part of my life, but apparently, life is not as ready for me to be done with this journey just yet.

About a month ago, Ashley and I were sitting on the deck, drinking our coffee and watching the birds fly around the yard, in and out of their bird houses. However, something just didn’t look quite right – did she buy more bird houses?!

My worst nightmare had manifested itself again, but I wanted to give it a couple of days to see if was allergies or just a glitch with my eyes, so I let it go. If you’ve been following this blog, you know I could never be so lucky…

Back to the eye doctor I went. This is a new eye care center that I began going to last year and my doctor was not in the office on this particular day, so I saw someone new. She began to discuss the common causes of double vision, but I did most of the talking when I shared that this was not my first rodeo. Another possible explanation that is commonly seen is over-wearing of the contact lenses, which can lead eventually cause your eye to dry and contribute to double vision. “Let’s have a look!” she said. My left eye was extremely dry and the cornea had some scratching. But my right eye was perfect, and I wear contacts in both eyes for the same number of hours each day, so this really didn’t answer things for her.

We dove back into my medical history and the medications I am on. In 2019, at the young age of 35, I was diagnosed with glaucoma, a mystery in and of itself. To treat that, I am prescribed eye drops which I take twice per day.

“It’s possible the medication is causing the dry eye, but that’s an uncommon side effect of this medication, and it’s strange that it’s one eye only.”

“Let me take a look at something else” she said. Like a scene in a horror movie, my eyelids were then flipped up to get look at my lacrimal glands – these are what produce tears. The right eye was normal, but in the left eye, there was possible innervation damage to the lacrimal gland.

Neither of us actually said the words, but I know we were both thinking it – there was, and always will be, a possibility of a recurrence. It was suggested by the eye doctor that at my next MRI, I have imaging done of my orbits, to see the inner workings of my eyes. Another mystery to solve, and when I shared this news with my family, we all said “only me.”

With many thanks to the wonderful team at the team at Yale, they scheduled me an appointment and got me in for scans last week. Double vision, double scans. Normally, I have a brain scan but this time, we added a scan of the orbits to see the inner workings of my eyes.

I think I spent more time and energy trying to keep my family calm, assuring them this was going to be fine and if there was anything there, I’d deal with it. I guess when you have dealt with this for so long, you become numb to it a little bit?

That following Tuesday, we arrived at Yale for a 7am MRI and while I lay on the cold slab of metal with the awful noises and banging from the machine, the only thing I could focus on was trying to breathe through the COVID face mask and the metal frame an inch above my face. Within a few hours, I received the long-awaited call and heard the news I knew was coming – you have a beautiful brain and the shunt is doing what it’s supposed to do. These words were such a relief to hear, but it led to the next question – why am I still seeing double then? Time will tell, as I am seeing a neuro-ophthalmologist this coming week.

None of this surprises me though – this has been the story of my life for the past fourteen years, and like everything I’ve been though, I’ll get through this and as the winds come, I will just keep adjusting the sails.

Recently, I was asked how this diagnosed changed me and I could tell by the look on the questioner’s face that my answer surprised her, but it was the honest truth. “It has been a hellish journey, but going through what I have has made me a better person and I am grateful for it.”

Like all brain tumor patients, brain cancer patients, and caregivers understand, this is, and will be, my cross to bear for the foreseeable future. No matter how positive the results, we face a lifetime of MRIs and testing, with the thought of the worst-case scenario lurking in our minds. I take solace in knowing that I have an amazing medical team looking out for me and the best family and friends any patient could ask for.

Fourteen years into this, life changed – perspectives changed. Anyone who has unfortunately undergone a life changing illness can likely attest to this, and while I would never wish this diagnosis upon anyone, this has been my blessing in disguise. No matter what, I have learned the importance of staying positive and hopeful. I now know that whatever obstacle comes my way next, I’ll keep smiling and doing the only thing I know how – maintaining a good outlook, being thankful for those around me and enjoying today.

Better Days

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Well, here we are – the end of 2021 is mere hours away and if you’re anything like me, you cannot wait for 2022 and better days. At least, I think so? I am hopeful that the new year will bring the “return to normalcy”, in whatever form that may look like and much better days for all of us. I don’t know about you, but I am sick of Zoom meetings, virtual events and the terms “social distancing” and “masking.”

This past year has presented all of us with unique challenges, requiring that we be able to adapt on the fly, and my job and passion for this cause has intensified. All cancer patients, but especially brain tumor patients, including patients with a benign tumor, are in desperate need of support and hope right now, so it is somewhat surprising to me that this is the first (and only) blog of 2021, but honestly, it is for the better. As a survivor, advocate and sole employee of the organization, I need the escape from time to time.

I have the pleasure of talking with so many patients and their families, hopefully being a source of comfort and hope for them as they are going through this diagnosis. After all, that is why my family, friends and I first began hosting our fundraiser and helping – to ensure that nobody else has to go through what I or my family endured. Now through the CTBTA, we continue to support groundbreaking research at the brain tumor centers here in Connecticut, as well as provide funding to ensure patients and their families can focus on their recovery and how to get better, as opposed to how they will make their mortgage payment or afford the electric bill.

In 2022, I will be a fourteen-year survivor, yet I still remember the day I heard the news, as if it was yesterday. So much has happened over the years, much of which has been shared here, but lately, I have been doing a lot of reflecting on my drastic career change. It all happened so suddenly and without much thought in the days and months that followed, but now that I have had the time to think back on it, I am perfectly content with the decision. Despite racking up a massive student loan bill, I am still glad I chose to attend law school and to push myself to return after my diagnosis and earn the degree. It is true, “you can do anything with a law degree” and despite not being a practicing attorney, I am utilizing my degree and fancy education that cost me a pretty penny, but in a way that is more satisfying, enriching and fulfilling.

Happiness is relative, but you need to follow your heart and mind. I could have sat for the bar exam a fourth time and who knows, maybe I would have passed, but would I have been happy? I don’t have the answer for that, but I would guess my answer would be “at first, yes, but in the end, not really.”

Life is short and if this pandemic has taught us anything, it is that tomorrow is not guaranteed.

My new year resolution? To continue my pursuit of happiness and adjusting the sails, for who knows what tomorrow will bring.

“And you asked me what I want this year and I try to make this kind and clear – just a chance that maybe we’ll find better days.”

Brain tumor education, support, and inspiration.