Ain’t Nothing Gonna Hold Me Down

I waited in anticipation.  I warded off all of those negative thoughts running through my mind thinking it would result in something positive.  Finally, after a long day of sitting and waiting, the door opened and in he walked:

“You’re going to need an operation, Chris.”

I stood there speechless and in shock – how is this happening again?  Did he really just say that?  Haven’t I already been through enough?  Why me?

My MRI showed further growth of the spot we have been watching since day one in 2008 and which was radiated last year.  The tumor is the size of a grape and is sitting in the “front lateral horn” of the brain.  Thankfully, this is a benign tumor but is acting “atypically”.  The typical neurocytoma, once removed and blasted with high dosages of radiation dies off and never grows back.  In all of his years, my surgeon has never seen a leftover piece of neurocytoma like mine grow in size after radiation.  For whatever reason, likely because this is the story of my life, my tumor did not respond to the gamma knife surgery and is persistent.

In the blink of an eye, I went from being in good spirits and thinking of which restaurant Ashley and I would celebrate at, to looking at my calendar to determine when the surgery would be scheduled for.  An exact date has not yet been decided upon but it will be sometime in early January.  I’ll have to go down to Yale for my pre-op appointment and go through the rigors of surgery all over again.  As I sat there listening and absorbing it all, I thought about myself but also the effect this has on Ashley and my family.  I am not worried about what will happen in the operating room as I have the utmost and complete faith in my neurosurgeon and doctors.  I am not however looking forward to the process of being operated on again and the days/weeks needed to recover.  And for my family, I’m sure this is not easy.   But together, we will all get through this and have a happy remainder of 2015.

As I gather more information, I’ll update you.  But if you’re on the other side of this post, do me a favor and enjoy every moment of every day because we don’t know when our fortunes may change.  Enjoy this holiday season with family and friends and give thanks and blessings for the everyday gifts we have.

Like my family said to me, for a reason that we are all still searching for, I was given this cross to bear and someday/somehow, I will understand why.  And you know what, I’m okay with it.  I’m not going to stop living or let today’s news bring me down.  530e9c97ed7a3e96831b5a77bd3ca664

Hey Pretty Lady Won’t You Give Me a Sign [Reprise]

As I sat at my desk today, fleeting thoughts ran through my mind about what tomorrow will bring.  But then, I refocused myself and got back to the task at hand.  However, something interesting happened along the way.  Better yet, I’ll go out on a limb and say my family and I got a sign.

Do you remember this post?  Well, as luck would have it, it happened  again.

As I sat at my desk, my phone began to buzz.  “Another group message about Christmas cookies from Jackie?” I thought.  No, the constant buzzing concerned something far more important.  When I picked up my phone, there were messages and this picture from my dad:

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My dad shared with my family and I that when he returned to his office, this pretty lady was sitting on his wall, just waiting to be seen, to let him know that all would be well tomorrow.

If that’s not a sign, then I don’t know what is!

Don’t Worry Be Happy

That was an MRI.  For forty-five minutes, sometimes closer to an hour, this is what I have to endure.  If you’re wondering what those annoying sounds are, wonder no more.  These are the rapid pulses of electricity running through the machine to produce the images that assist doctors in discovering tumors and other bodily harms.  But don’t worry, you get ear plugs.

Worry.  That word is too commonly thrown around in today’s world.  While in the midst of working, Christmas shopping and having a social life, I have been mentally preparing myself for my MRI next week.  Shockingly though, as much as it’s been on my mind, I haven’t let myself dwell on it.  Fortunately, an MRI is nothing new for me as I have had so many in the past six years.  Instead, I look forward to MRI days as I know that they are my ticket to receiving a clean bill of health.  The process of having one though?  That’s a whole other story…

Each time that I go to the hospital to have one, I have to complete a form and list out the dates of all my past MRIs and list each hospitalization in my life.  It boggles my mind why patients are required to fill out the same form every time when we have so much on our minds as opposed to the hospital simply pulling the patient’s chart or better yet, having us review the record and noting any changes and/or updates when we arrive.  The part that gets me every time is when the radiologist says: “before I can bring you into the room, can you tell me your name and date of birth?”  As if I would be here otherwise?!  But I digress.

Over the past six years, I’ve seen images of my brain captured by MRIs.  However, it’s not just those very loud noises and shaking of the machine that produces the images – I introduce you to contrast dye.  For most MRIs and with my scans, right before the very last images are taken, contrast dye is injected into a vein.  You can feel it – your body goes from a comfortable temperature to feeling like you just walked outside into a blizzard.   But the contrast is important as it provides a greater look at the organs and for making a diagnosis.  Then there’s the claustrophobia aspect of it all; being in an MRI machine, unable to move a muscle with the mask an inch over your face is anxiety-provoking even if being in confined spaces does not bother you.

So as  part of my new-found quest to be an advocate for brain tumor research and educate the public, I’ve decided to share some of my past MRIs with you.

Let me start with this: Screen shot 2014-09-30 at 8.09.14 PMYou may recall seeing this MRI in a previous post, but I am sharing it again because this was my very first MRI – the beginning of what I now say defines who I am as a person.  The MRI shows the tumor sitting in my ventricular system up against my optic nerve and pushing my brain off to the sides.  Hydrocephalus (water on the brain) is also present.  Then, there was this from this past March:

brain-scan-2Do you see the circle in the lower right-hand corner?  If you guessed that is my shunt, then you are correct.  It’s amazing what doctors can do today.  Because of that device, my brain looks nice and relaxed.  There are no obstructions, the hydrocephalus is under control and there is no tumor regrowth.

Throughout the years, the goal was to have me scanned once per year.  During post-op years 1-3, I was scanned once every six months.  After that ,everyone (including me) hoped that I would only need to get scanned once per year but now, six years out, that has not happened…yet.  Since just last October, I have had 4 MRIs.  The one below was “pristine” and perfect.brain-scan-1

It amazes me to see this one compared with my first above.  To think that the mass was removed and in the span of five years, my brain looks normal again.  Talk about a hard job!

Okay, so enough talk about the preparation – let’s go and do this.  I’m as ready as I can be for next week and whatever results that it brings.  As mentioned in a previous blog, I am being re-scanned out of precaution.  I want to get through next week before I show you the most recent scan but as I look at it, I go back and forth on whether it looks any different.

Hopefully it’s nothing and I can resume living my life.  Hopefully I won’t have to worry and can be happy.  But time and enduring more loud noises stand in the way first.  This is the story of my life.  Yet, I manage to always find the positive in every situation – even for return trips to Yale for MRIs.

Give Thanks and Praises

And just like that, in the blink of an eye, the holiday season is upon us.  But before you sit down tomorrow to enjoy that glorious feast, take a moment to give thanks to those around you and for the plentiful gifts bestowed upon you.  Have you ever wondered why we celebrate on one day as opposed to every day?  I  know I have.  Just some food for thought.

Yesterday, I had the pleasure of listening to Army Sergeant First Class Joe Kapacziewski speak at the Middlesex County Chamber Breakfast as he was honored as the Role Model of the Year by the Chamber.  His story is eye-opening and truly inspirational.   As he shared in his remarks, Joe was injured by an enemy grenade when he and his men were ambushed in Iraq on October 3, 2005.  The ambush resulted in severe injuries to Joe’s leg, hip, artery and nerves.  He spent seven months at a rehabilitation facility relearning daily tasks that we all take for granted.  As he stated during his remarks and in during his Q and A, family, friends and his support group often got him through these difficult times.  However,  after more than 40 surgeries and countless hours of rehab, Joe made the difficult decision to have his leg amputated and then went for intense physical therapy to relearn how to walk.   Through hard work and determination, Joe was the first Ranger to return to the line with a prosthetic and was deployed to Afghanistan six times.  Furthermore, Joe was deployed eleven times in support of the Global War on Terrorism.   However, Joe shared that his return came with naysayers and those who doubted his ability and cautioned him in his quest to return.  Yet, he stared adversity in the face and is the true epitome of an American hero and someone who we can all look up to.

So this Thanksgiving, I have plenty to be thankful for.  Like Joe, I live for every day and count my blessings.

  1. My rock, my best friend – Ashley
  2. Family and friends
  3. My continued good health
  4. My job and generous co-workers
  5. The simple joys of life
  6. My dog, Coddington
  7. The setbacks endured this past year that have made me stronger and given me character
  8. The freedom of life and ability to live
  9. The ability to find hope and laughter even in bleak situations
  10. Great and lasting connections made with the wonderful people from the CTBTA

This list comprises just a small sample of all that I have to be thankful for.   I hope and believe that next year, at this time, I’ll be in a similar situation and counting my blessings and giving thanks for the wonderful gifts I recognize everyday.  However, I cannot but help to think of what my MRI next month will show.  Was the brightness just an aberration or was it tumor activity?  Time will tell.  But until that day, let’s give thanks and be grateful for the everyday gifts we receive.

So while you are enjoying that turkey and gravy, be thankful that you’re able to do so with your family and in-laws and say a prayer for me.

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We’re Gonna Play The Sue You, Sue Me Blues

Decorative Scales of Justice in the Courtroom“May it please the Court, and you, ladies and gentleman of the jury.”

I have been robbed of the opportunity to speak those words in court so I have taken the liberty to do so here.  If you practice law, you are well versed with what these words mean, but for those who are not lawyers or did not go to law school, this statement is uttered during the opening of trial.  I visited several attorneys to explore options of filing a medical malpractice case, all to no avail.   The statute of limitations has run but nothing says I can no longer think about it.  The lawyer in me often runs through the elements of negligence when I think about my case and the standard of care that a doctor should be held to.

To be found negligent, a plaintiff must show that: 1) the defendant owed a duty of care; 2) the defendant must breach that duty; 3) the defendant’s actions caused the injury; and 4) the plaintiff must prove actual damages.

Here’s how these requirements apply to my case:

1 and 2. You know the basics of my story: In the summer of 2007, I began experiencing double vision. Nothing precipitated the double vision – there were no warning signs.  No vomiting, no blackouts, no memory loss, no loss of balance – just the mysterious double vision.  At a visit to my optometrist, a routine eye exam was performed and my optometrist told me that “he saw something” when he looked into my eyes.  Puzzled and fearful, I asked what he meant by this and prodded for some insight. Yet, much to my chagrin and against my wishes, he did not delve into the possible causes that would explain this problem.  He simply brought me into his office, sat me down and said that as far as he can see, my optic nerves were inflamed (known as papilledema in the medical world) but there was nothing for me to worry about.   In his opinion, my eyes and optic nerves looked healthy.

Within two weeks of wearing the glasses, the double vision subsided.  Fast forward to the summer of 2008: the double vision returned.  This time around however, those same prism glasses did not correct the problem.  When I returned to the optometrist, he evaluated me and agreed that a new prescription for prism glasses was needed but determined that the reason for this was that “my eyes were eating the prism.”  He conceded that this was odd but not unusual for someone wearing prism glasses and wanted to write a new prescription.  Yet, inflamed optic nerves and papilledema do not just occur overnight.  Each and every year that I went for my annual eye exam, the same battery of tests were performed: I read the letters on the chart, my peripheral vision was checked, a glaucoma test (or the puff-of-air test) was given and my eyes were dilated. Each and every time, my doctor “saw something”, but didn’t investigate further.

It’s reasonable to conclude that my doctor owed me a duty to provide quality care and advise me of potential problems when he informed me that he first noted papilledema and first saw something pressing against my optic nerve in 2007 and he breached this duty when he failed and refused to send me for further evaluations and prescribed prism glasses.

3.  Causation is proven by a showing that the doctor’s actions caused the injury.  After removal of the tumor, my surgeon informed my family and I that, based upon the size of the tumor, it was likely growing inside my head for anywhere from three-to-six years.

In other words, “but for” the doctor’s negligence, the tumor could have been detected earlier.  The procedure to remove the tumor would have been less invasive and the recovery would have been different.

My lawyers agreed that my case satisfied requirements 1 and 2, and potentially even 3.  This brings us to element 4: damages or harm.  This is where my case failed.  Fortunately, I made a “recovery” in the legal sense.  In the opinion of the attorneys, I could not show that I had suffered actual damages.  I was, in all practical ways, cured and healthy.  My prognosis was good, the tumor was benign and removed and I had no permanent debilitating consequences from the delay in diagnosing me.

In my opinion however, this is where the law fails.  And my story is a compelling example of how that is.  My law school career came to a screeching halt and I never recovered in the classroom; as a result of the size of the tumor at the time it was removed, I now have cognitive disabilities which hinder my ability to quickly process information; I developed seizures and will likely remain on seizure medications for the rest of my life.  These are just a few.

Please don’t get me wrong. I don’t want any compensation or monetary damages for pain and suffering.  What’s in the past is in the past.  But what I do want is to ensure that this problem does not occur to anyone else.

Find me one person, one attorney that is even a plaintiff’s attorney, who could tell me that this was the right decision.  How do we, as a society, fail to hold a licensed optometrist responsible for failing to diagnose my problem over the many years that I visited his office?

Despite my high tolerance for pain and lack of manifestation of any symptoms, how did the presence of the tumor go undetected for so many years?

So as I already said, my case failed for a lack of recognizable damages.  But how can the law allow such grave deprivations of patient care and allow a doctor to continue his practice?

I struggle with this question every day and wish and pray that this problem does not scare another innocent person to death.

While I can no longer pursue a lawsuit, perhaps my story will someday help to influence a change in how we hold professionals accountable.

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.

Everybody Hurts

If you have been following my blog, you probably get the sense that I am an overall positive person who has overcome some pretty great adversity.   But life hasn’t always been so grand and happy for me.  During my first semester back to law school in 2009, I struggled emotionally and lived in fear of the unknown.

As I was back in Rhode Island, gone was the comfort of being surrounded by my family 24/7.  Gone was the comfort of knowing that Yale was five minutes from my house.  From January 2009 through May 2009, I was scared.  On top of the possible side effects and the new way I was living, I was constantly worried about all of the what-ifs.  Above all else – I had to find a way to be okay with “my new normal.”

Upon arriving back in Rhode Island, my friends offered their support and assistance with anything that I needed.  But what nobody could offer me during these times was the guidance and calming effect that was provided by my doctors, therapists and family.  I took a full course load, which in retrospect I probably should not have done, but I needed to prove to myself that all would be fine and live my usual life and resume my schedule.  What I neglected to realize was that I couldn’t just jump back in – things needed to be readjusted and put into perspective all over again.

Classes proved difficult.  I had trouble managing my time as the readings took a lot longer than they had previously; reading through the legal jargon just to understand the judge’s reasoning behind his/her decision took hours.  I struggled with taking notes about what I had read.  This became a major problem, as my final exam grade was contingent on what I could absorb and comprehend from these readings.  I struggled and wanted to just quit at times.  Nonetheless, I put a smile on my face and carried on.

What nobody knew is what a dark and difficult time this was for me. Even though I was so happy to be back in school working toward earning my degree, I was struggling and was spending more hours in my professors’ office hours each day to go over the materials instead of living the everyday 24 year-old life I was used to.  Was the neuropsychological testing correct – were my cognitive impairments permanent?  Was I going to fail out of law school?  As the semester came to a close, I panicked because finals were approaching and in law school, final grades are based upon one grade – your score on the final exam.

In addition to this stress, my personality was changing.  I was suddenly guarded about who I was as a person and as a law student and became insecure about my knowledge and skills.  When in class, I listened to my peers recite the case with ease and making it look like a walk in the park.  I grew irritable and frustrated with my abilities (or should I say, inabilities).  There were many moments of loneliness and a feeling of helplessness.  Then, there were moments of emptiness.

After a night out at a bar with my friends, we all returned to Ashley’s so the night would continue but I noticed that my friends were happy, loving life and seemingly without a worry in the world.  As I sat there watching, I began to reflect on what had happened to me and what I had been through six months prior.  The magnitude of emotions got to me and I went to an upstairs room, sat on the bed reflected and let my emotions pour out.  Fortunately, Ashley, being my rock and support system, immediately noticed and rushed upstairs behind me.  She did not say anything, nor did she need to.  She tried to be strong for me and to keep me encouraged but little did she know, I saw a tear rolling down her cheek.

My story has had so many ups and downs that are full of laughter, sorrow, inspiration and hope.  But I have never, until just recently, expressed the emotional toll it took.  I don’t know why, but recently I’ve felt the urge to share, in particular because I have been hearing of more and more people undergoing a hardship.  Dealing with a brain tumor, or any illness or disease for that matter is scary and your life gets turned upside down and nobody should have to face it alone.

So while I have shared a lot about the positives of my story, there have also been a lot of emotional times as well and for those of you who are undergoing something similar, you know what I mean.

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