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.

Something To Believe In

I’m somewhat at a loss for words…

Last week brought about many different reasons for hope and opportunity.  On Tuesday, I was scrolling though my inbox and saw an email from my doctor.  Under normal circumstances, I probably would have taken the contents of that message as bad news.  However, as I began reading the message, I realized that I went from feeling nervous and timid to shocked; my body rendered momentarily unconscious.

Before I head out the door for work, I like to spend some time watching the morning news to get me up-to-speed on everything I need to know for the day ahead.  What I find is that 99.9% of the news is full of sad, depressing stories.  And when I am on social media, I find that I have further found myself surrounded by news not for the faint of heart.

The email that I refer to contained news, but this news was different. It gave me a renewed sense of hope and acted as  a much-needed reminder of all the good and kindness in the world.

So I’m just going to cut to the chase: in that email from my doctor, I learned that through the Denver Foundation, a gift of $53,000 was made to The Cusano Family Fund for Brain Tumor Research!

Cusano Family Brain Tumor Fund - LogoAfter composing myself, collecting my thoughts and having my excitement under momentary control, I sent an immediate email back to my doctor:  Who did this?  Why was my fund chosen?  How did they know of my fund?  There were a litany of questions that I dying to ask.

During a call with my surgeon the next day, I learned that the Denver Foundation first inquired about my fund in late 2015.  Similar to a bank, a donor deposits money into an account managed by the Denver Foundation.  Once the donor decides on a cause, a directive is made to cut a check to the designated fund.  Unlike a grant that I applied for, this was a gift – a completely unexpected, selfless gift that I will be forever grateful for.

Unfortunately, the answer to all of my questions remain unanswered.  I can only guess that the person responsible follows my story.  So to the mystery person that made this donation – I hope you are reading – words alone cannot express my gratitude.  Your generosity and desire to help me in this fight is beyond appreciated, and while I know that I can never repay you, please know that I will do everything in my power to help the Yale Brain Tumor Center put this money to the best use possible in finding the cure for and treating benign and malignant brain tumors.  My fight will continue on for as long as I am able and until the cure is found – I hope.

In a world where we hear a lot of sad and depressing news, isn’t it refreshing and joyous to know that good truly exists?  For me, this is an easy question to answer.

To the generous donor – I will be indebted to you always and words will never be enough.

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.

Hallelujah

With the Christmas season now upon us and in full swing, we’re all asking each other “what do you want for Christmas?”  Let’s see – clothes, some books, an iPad?  Maybe a watch or some jewelry?  However, for me, this Christmas and holiday season feels differently.   I feel blessed every day that I wake up and go to work – just grateful to be alive and knowing how fortunate I am compared to those who aren’t as lucky as myself.

It was this time last year that I learned of the regrowth of my tumor and I prepared for yet another surgery.  This year, I am in good health, happy and grateful to be here enjoying life.  Sure, I am in stores shopping and watching as the rest of society furiously runs into stores hunting for that one special gift or the best bargain they can find.  But shouldn’t we all take a minute and remember what the “true” meaning of the holiday is?  I think so.  As Linus said to Charlie Brown:CharlieBrownChristmas

And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, Fear not: for, behold, I bring you tidings of great joy, which shall be to all people. For unto you is born this day in the city of David a Savior, which is Christ the Lord.  And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger. And suddenly there was with the angel a multitude of the heavenly host praising God, and saying, Glory to God in the highest, and on earth peace and goodwill towards men.  That’s what Christmas is all about, Charlie Brown.”  

I can relate to good ole’ Charlie Brown.  As I have gotten older and with all that I have gone through, I can appreciate the true meaning of the holiday.  Yesterday, Ashley and I went to see “A Wonderful Life” at the Goodspeed Opera House.  You know the story…a man down on his luck financially contemplates suicide until an angel shows him the value of his simple, yet fulfilling life.

It’s a relatable tale, as each of us I’m sure can remember a time when we felt a little desperate, like George Bailey.  While the beginning of this year was difficult with undergoing surgery, and then with the lives of two young fellow brain tumor patients taken too soon, I’ve been trying to take in every moment of this holiday season.  I live a quiet, fairly simple life…but walking around a beautiful quaint town with my wife on an unseasonably warm December day, going to see a show and enjoying a phenomenal dinner made me feel so grateful for this life.  The little things most certainly are the big things, and it almost feels doubly so at the holidays.

No matter how overwhelming and dark life can seem at times, there is good all around us.  Sometimes it takes an angel to drive that point home.  I have a couple new angels this year.  I hope that somewhere in the distance I will hear the faint ringing of a bell and that those angels are gaining their wings, because they’ve most certainly left their impact.  As Leonard Cohen sang: “Hallelujah, Hallelujah.”

So while I don’t expect anyone to stop running around the mall to find that perfect gift, not even myself, I ask that you just take a few moments during your holiday season to count all of your blessings, no matter how big or small.

Yahoo! It’s A Celebration

As we turned the calendar into January 2015, I was preparing for surgery, albeit confident.  I was confident that this surgery would be the final surgery that I would need in this seven-year battle to rid the beast once and for all.

As I went in for my MRI this past Friday almost a year later, I wondered about my scans and the status of my brain.  Had you told me at the start of 2015 that my follow-up scans would reveal that my brain was completely clear with no residual tumor and normal in appearance, I would’ve called you an eternal optimist.

However, after seven long years of my battle,  aging me like a fine bottle of Merlot, I thought I was going to spoil as my surgeon walked into his office where Ashley and I awaited him.  He came in with a look on his face that I’ve seen far too often (usually one with not so great news).  Yet, that face quickly turned into a great big smile as he delivered the news:

“Chris, today’s scans are the best images of your brain that I have ever seen!”

YES!  At that moment, I learned that my brain looked “as normal” as it can look, given all that it has gone through.  Of course, me being the fanatic of the human brain that I have become, I asked to see the scans.  He showed me several images, many of which were what he described as “normal” and unremarkable.  This was, for all intents and purposes, the first time we have seen my brain that looked like one you would see in a health book of healthy, human brain.  Let’s not mention the void of empty space where he said he had to remove a vein.  But hey, I’m functioning, right?!

As he delivered this news, I realized that moment was the beginning of my “new normal”.  I was so excited and relieved to hear this news.  I prepared myself to hear that “while everything looks great, we want to watch this spot or that spot…”, or “we’ll continue to monitor this piece over here which we can radiate, if needed.”  But no, none of that happened.  So where do I go from here?

I’ll go back to Yale in six months for a follow-up scan, and then, if all goes well, we’ll try to push it to a year!  Wow, to think that I’d be so excited that seven years out, I’m excited to finally get to scans once-per-year is a crazy thought, but it’s one I gladly accept.

Receiving this news gives me the opportunity for the first time in a very long time to focus on other things that exclude my tumor and health.  I can focus on my family, myself and my career goals and getting to the point of where I’m comfortable in my life and have some grander opportunities down the road.   I will continue to raise money and be an advocate for this cause that I care so deeply for.  The possibilities are endless, but for sure, I will not have to worry about my brain tumor for a while.  I can even look forward to going back here!

The view from our hotel balcony in Venice, Italy
The view from our hotel balcony in Venice, Italy

Thank You, Friends

Every cloud has a silver lining.

If you would have asked me in 2008 whether I would find any positives in my diagnosis, I more than likely would have said “no chance.”

Amazingly though, as I sit here seven years later, I can say with absolute certainty, the answer to that question is a profound “yes!” At the time I was diagnosed in 2008, I was 24 years old and left wondering whether I would even make it through the surgery, never mind what my future would have in store.  Through the multiple ups and downs that I have faced since that day, I am standing prouder and taller than ever.  I have found my calling.

What I failed to realize in 2008 is how my diagnosis would change my life, and the lives of those around me, namely my family.  Yesterday, along with my wife and family, we went to Yale-New Haven Hospital and presented a check in the amount of $13,500.00.

Dr. Joseph Piepmeier with my brother Stephen and I.
Dr. Joseph Piepmeier with my brother Stephen and I.

Without each and every person who supported this event, attended the concert, donated to the fund or donated merchandise for our raffle, yesterday’s presentation of the check would not have been possible.  Because of you, we are providing hope to patients and their families dealing with this diagnosis.  With these monies, Dr. Piepmeier and researchers at Yale spoke of hope and possibility to better treat brain tumors.  He discussed his hope to develop a virus to destroy the tumor cells that can be injected directly into the tumor but while not harming the brain.  To think that this money can deliver those results brings a smile to my face, and should certainly bring one to yours also.

First and foremost, I thank Ashley and my family for supporting me in this quest and continuing to be there by my side  every step of the way.  Without you, none of this would be possible.

Next, a giant thank you to our sponsors.  Without your support, this would have never been possible.  I am humbled by your generosity and compassion.  I want to make a special mention to the “Rock Stars”, our corporate sponsors Carla’s Pasta and ShelfSpace Marketing, LLC.  THANK YOU!

I would be remiss to not mention each company who donated a raffle item – J. Christian’s, Omar Coffee Co., Arnold’s Jewelers, Libero Jewelers, The Max Restaurant Group, The University of Connecticut, Ted’s Auto, Precision Concepts and The Walter Camp Football Foundation.  The raffle raised about $2,500 of the $13,500.  Thank you for your support, dedication to this event and desire to assist in this quest.  Your generosity alone merits the grandest of recognition and I hope that you can feel the pride of knowing that you contributed in such a great way.

To the bands, Broca’s Area and Goodnight Blue Moon – absolutely amazing.   You entertained the crowd all night long and gave all of us, brain tumor patients included, a reason to smile and forget about life for a while.  As I mentioned in an earlier blog post, you made the night the success that it was.

I am thrilled to tell you that next year, we’re taking the concert to the Stoney Creek Brewery in Branford.  We tested the waters and now know that this event could be the success that we originally envisioned.

So what more can I say, other than: “Thank you, friends.  Wouldn’t be here if it wasn’t for you.”

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.

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