Tag Archives: MRI

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.

I’m Walking on Sunshine

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Today, I walked into Yale New Haven Hospital for my six-month MRI feeling anxious and a little uneasy, because, after all, it is Friday the 13th.  However, deep down, I was confident because I have the best surgeon ever, and I walked out the happiest man on the face of the Earth.  And after eight long years, five operations and one gamma knife surgery, the stars have aligned and it appears that I am now DONE battling my brain tumor!

You pick the adjective – relieved, ecstatic, thrilled – I’m it.  Today’s scans showed nothing, other than a normal looking brain.  Sure, my neurocytoma might have given me a battle at times and it even attempted to break me, but, I win.

I honestly don’t know where I would be if not for Dr. Piepmeier and the staff at Yale.  For a quarter of my life, I have relied on him as my surgeon, allowing him to use scalpels and God only know what else inside my brain, but he has also been a friend.  He has supported me in everything I have done, including rehabilitation, my pursuit of my juris degree, my attempts at the bar exam, supporting my family’s fundraiser and creating a fund at the Yale Brain Tumor Center for us.

The gravity of this morning’s news has not quite sunk in yet, but I know it will.  Ever since I was diagnosed and survived, I knew I had a new lease on life, but this news serves as the assurances I have longed for.GR4ZD00Z

I am not a survivor, but rather a warrior. I overcame some very scary days, but I am alive and able to share my story.  So, I am going to give back and continue advocating for the cure and fundraising to help the doctors and researchers who saved my life.  I would never have imagined that I would take this entire experience and turn it into something good, or into something that I even want to discuss, but it is a cause I care so deeply about.  I want to do as much as possible to help find the cure to brain tumors, and bring hope to the warriors battling.

Thank you family and friends for your continued support and reading about my journey – I cannot wait to see what lies ahead for me!

Don’t Worry Be Happy

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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.

Roller Coaster Ride

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So the first Friday in October came and went – yes, results day.

Before I get to my results, I would like to congratulate all those who passed the Connecticut bar exam.  Enjoy this time and your day being sworn-in as a member of the bar!

As for me?  The day did not go as I would have scripted it to.  I was supposed to be rejoicing and celebrating with you.  Yet, for reasons unknown at this point in time, my fight shall continue on.

Quite simply, yesterday’s results were inconclusive.  In comparison to my scans taken in March, what appeared on yesterday’s MRI was noted as something to watch. Last December, when I went in for the gamma knife surgery, the area where treatment was being applied was clearly visible and clearly tumor.  The growth was blasted with a high dose of radiation and at my follow-up MRI this past March, my surgeon gave me a thumbs up; all signs pointed to the conclusion that the procedure had killed off the tumor cells and any remaining cells would soon wither away.

Yesterday, I had the chance to see for myself the three images – the MRI from last December, the MRI from March and then the MRI from yesterday.  He placed all three of them on the screen for us to see.  March compared to December was significantly smaller and indicative that the treatment was working.  The scans from yesterday showed that the treatment site was still the same size as in March – but with one notable difference.  Brightness.

Brightness on an MRI is indicative of tumor activity.  But brightness can also indicate “radiation necrosis”.  Radiation necrosis is an accumulation of dead tissue and dead cells killed off by the radiation.  My medical team was going to review the results with the radiologist for his opinion.  Aside from that however, I’ll continue to monitor myself for headaches, dizziness, forgetfulness, eyesight problems, vomiting and nausea.  Yet, because of the location of where the tumor originally was, I do not experience any of these symptoms nor have I ever until the very last-minute in 2008 at which time the tumor was likely 3-6 years old.

So where do I go from here?  I’ll wait some more.  I am being rescanned in December and we’ll again review those results and develop a plan if needed.  If it is radiation necrosis, there would be nothing that I need to do.  However, if results indicate that this is tumor activity, further treatment and even surgery could be an option.

This is the story of my life it seems.   But I am resilient and a fighter.  I have never complained or felt sorry for myself and have always maintained a smile on my face through it all and I will continue to do so.  For the next two months, I will do my best to not obsess over this, but being human, that is easier said than done.  However, thanks to great family and my medical staff, I’m in good hands and will once again come out on top.  Maybe I’ll even have my own swearing-in ceremony as a member of a survivor/relentless fighter association!

The Waiting Is The Hardest Part

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I had trouble falling asleep last night because I was thinking.  Yes, thinking about tomorrow’s test and results and thus I have decided to write about it.

For some, tomorrow is just another ordinary day.  Maybe you’re going to work or to school.  Maybe you’re going for a job interview.

Oh right.  Maybe you’re waiting for the Connecticut bar exam results to be released…

If you are, I understand the anxiety that you are feeling – I’m anxious for tomorrow too.  As I previously mentioned, three times since 2009, twice on the first Friday in October and once on the first Friday in May, I have experienced great angst.  To the hopeful bar applicants, tomorrow, I will similarly face angst with you.  As I discussed in past entries, I tried and tried and tried to pass the bar exam, all to no avail.  Bar exam results day has been the lowest point of my three times already.

If you took the exam, you’re likely wracking your brain to remember what you wrote on the essays or whether you correctly answered any of the MBE questions.  It’s an anxious feeling.  With this test, there are so many things depending upon the results and you have to wait three months for the results.  You will undoubtedly refresh the website multiple times eagerly awaiting to see that the results have been posted.  When you look, your heart will fall into your stomach and you can only hope that you see your name on the list.

Well, applicants, you’re not alone.

You see, tomorrow I will go in for a test and receive my results.  Right there and then.  However, for once, I’m boasting.  Unlike the myriad of emotions that bar applicants are likely currently experiencing, I am extremely confident that I will get good news at tomorrow’s six-month MRI.

Nevertheless, despite the news that tomorrow brings us all, we need to stay strong and remain confident in our abilities and who we are as people.  If you’re awaiting tomorrows results, keep in mind that you have come this far – you are on the precipice of accomplishing a great achievement and are hours away from working long and tireless hours.  As for me, I am hours away from taking another step toward putting my years of battling the monster in my head behind me.  So no matter what, rest assured that when that list of names is publicized tomorrow for the whole world to see, know that you will not see this:

Screen shot 2014-09-30 at 8.09.14 PM
An image of my brain taken June 27, 2008. The tumor filled the ventricular system and displaced the septum pellucidum, extended back toward the body of the lateral ventricle and was hemorrhagic.

Eager; nervous; excited; anxious.  Those four words best describe how I feel.  I’m sure you do too.  I am confident that tomorrow, we will quickly forget that we feel this way.  Until then, we can only wait though.  I look forward to seeing social media blow up with your exciting news.  I’ll be on social media tomorrow with my results, even if they are not what I hope for.

There is only one difference between you and me tomorrow.  If you pass, you will forever be done with tests.  Me?  I’ll be ecstatic, but it is still the early stages of lifelong test anxiety.

Maneater [Reprise]

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“We rarely get to prepare ourselves in meadows or on graveled walks; we do it on short notice in places without windows, hospital corridors, rooms like this lounge with its cracked plastic sofa and Cinzano ashtrays, where the cafe curtains cover blank concrete. In rooms like this, with so little time, we prepare our gestures, get them by heart so we can do them when we’re frightened in the face of Doom.”  Silence of the Lambs.

It was time, once again.  I was wheeled from my pre-op room around the hospital hallways down to the gamma knife room.  What I remember most about the gamma knife room was that it was very cold and bright.  It was a large room but without many objects.  In fact, there wasn’t much at all – just the machine where treatment occurs.  The nurse and oncologist had me lay down on the cold metal slab.  While this was nothing new, the disturbing part was when they screwed my head down to the table so that it could not and would not move during the treatment.  Much to my chagrin, the bolting down occurred and not before long,  my head was affixed to the table –  as in it was bolted to the table.  Crazy thoughts like “what if I sneeze during the procedure?” ran through my mind.

Once I was guided into the machine, I closed my eyes and let the games begin.  Yes, the games.  I envisioned the procedure something similar to a game of Star Wars.  I could not see what was happening behind my head, but I knew beams of radiation were streaming into the tumor and simultaneously destroying its growth.  In actuality, this machine administers radiation in a hemispherical array and hones in on the specific target.  Hence, the mapping that I discussed in part one of this post.  The rest of the brain tissue is left untouched.  The entire procedure lasted about one hour but felt like eternity.

I was guided out of the machine and aided to sit up where the mask was removed from my face.  The oncologist grabbed his trusty drill and began to remove the screws that held the frame in place.  Forget the fact that I could not feel the pins coming out of my skull or feeling the blood that dripped out, the sounds of the drill so close to my ears still haunts me to this day.  The pin sites were all cleaned and my head was wrapped in gauze.  photo(9)Alas, the procedure was over and I was wheeled back to where my family was waiting during the treatment. I could not be happier to be going home – but who am I kidding, I’m pretty sure that anyone who is released from a hospital stay, no matter how long or how short, is happy to be told they’re going home.

It didn’t matter to me that I felt nauseous, hot and then cold,  extremely groggy and tired from the procedure.  After all, this was all “to be expected.”  I do my best recovering at home.  admin-ajax.phpComfy chairs, good food and the best nurses.  Not sure if they would agree though…

Up to today, I have felt great and have no reason to believe that there is any further growth.  Yet, I cannot be certain and will always have my doubts.  I prepare for the worst because then, any sort of good news makes me feel like I’m on top of the world.  Yea, I deserve that.  Hopefully good news comes my way next month when I go back for my MRI.

Maneater

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At the time that I began writing this blog, I had just experienced my latest obstacle in my life as a brain tumor survivor:  Gamma knife surgery.

As a reminder, at my MRI last October, it was discovered that there was a small regrowth of the tumor.  But so quickly?  Yes, this was the unfortunate truth.  I knew what I needed to do: I remained resilient despite the news; I had to continue battling and fighting on.

I was presented with three options –

(1) we could take the “wait and see” approach and re-scan in three months to ensure that there was no further growth;

(2) daily radiation for six weeks to destroy the growth of the tumor cells and radiation to the rest of the brain if other cells were discovered; or

(3)I could undergo gamma knife surgery.

I tried to rationalize and understand the benefit to each.  Each option had its pros and cons in my mind but I just could not reason with myself why I should wait and allow the monster in my head to continue to grow and possibly affect my life as it had five years ago, nor could I envision myself going in for treatment every day for six weeks if it was possible to have it done in one day.   I had already made my mind up, but wanted to hear the thoughts of my medical team.

Each of the options were presented, again all having pros and cons and different possible outcomes that could affect my livelihood, but  at the close of my consultation with the radio-oncologist, he indicated that gamma knife surgery would likely be the most effective course of treatment.  Relieved to hear this, I expressed that this was my preference.  Yet, before a treatment plan could be established, a consultation with the “brain tumor board” was necessary.

A few days later, I got the phone call that gamma knife surgery was the chosen course of treatment and I would be on the schedule before the end of the year.  Time to get my game face on yet again and prepared for battle.

I knew very little about gamma knife surgery; let alone what it even meant.  However, I soon read up on the procedure and educated myself on it.  I’ll do my best to describe the pre-procedure steps below and then in my next post, I’ll tell you about the treatment itself.

Upon arriving for my treatment, I was brought in to put on my bracelet and hospital gown. This entire routine has become all too normal for me. The nurses gave me a finger prick, followed by putting in an IV port to administer medication and contrast for the MRI.  However, this is where this procedure differs from being given anesthesia and waking up hours later.  On gamma knife day, the neurosurgeon and nurses applied a local anesthetic on my forehead where the head frame was to be placed.  Using a drill.

The head frame was made of a heavy metal and was extremely tight-fitting to my face.   When I was looking at it sitting on the table, I didn’t connect the dots that this slab of metal would soon be placed onto my face and head.  I was unable to appreciate and fully comprehend that that was the frame to be put onto my face.  While the nurse held it in place, my neurosurgeon got his drill and proceeded to drill pins into my forehead and skull to hold it in place.  Not even the localized anesthesia was not enough to prevent the pain.  But alas, the frame had been affixed to my head.  I don’t know what a vice feels like, but this sure as hell felt like what I would imagine.

Next step: picture a colander.  Something very similar looking to that was then placed on my head.  I wish I could have seen what was taking place at the time because it sounded like a great game of battleship was taking place…”B52”…”E13.”   Joking aside, the letters and numbers were the doctors’ method of mapping where to administer the radiation.

Upon completion of the mapping, it was time for the MRI.  I was wheeled around the hospital in a wheelchair with this metal vise on my face – if I could have known what the visitors to the hospital who had seen me were thinking.  I have been in for numerous MRI’s, but never one with a metal frame on my face.  The radiologist had to add another piece to the frame and this made my head feel that much heavier.  Luckily, this MRI was only 35 minutes, compared to the usual 50, but the frame and contrast combined to make it one of the most unpleasant MRI’s I’ve had to date.

With all of the “pre-procedure” work over, it was time for lunch… with the frame still on my face.  I thought to myself “how the hell am I supposed to eat lunch with this thing on?”  I wasn’t given a choice – either I was going to eat my lunch or fast some more until dinner.  So in came my gourmet lunch and drink (luckily, they gave me a straw).   I heard an occasional snicker from Ashley and my parents as I wrestled with the food to get it around the frame and into my mouth but I managed to eat and drink without spilling on myself.  This is a perfect example of a simple task too often taken for granted.

All the while, and what nobody knew at that moment was the angst and restlessness that I was experiencing.  Outside, I was smiling and content.  On the inside, it was a completely different story.  My mind was racing and I began thinking of the worst possible outcome.  But then, like I had done on previous occasions, I took a deep breath, composed myself and prepared to walk down the hall toward the gamma knife room.  A red-haired nurse greeted me.  I wondered if her name was Clarice…

Changes In Latitudes

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At the time that my shunt was inserted, the doctors cautioned me that I should prepare myself for the day that it would need to be replaced.  Little did I know that that day would come just four years later.  While nothing in life is certain, nor should anything be taken for granted, the actual expectation was that the shunt would only need to be replaced every 10 years or so.

I’ll admit, I do not profess to understand all of the complexities and technicalities of the brain, though I wish I did.  Ever since my diagnosis, I have become fascinated with the brain, how it works and controls every part of the body.  I soak in everything I can possibly learn about it.  My doctors informed me of the signs and warnings that I should be on the lookout for that would signal a need to replace my shunt: redness or swelling along the path of the shunt, headaches, confusion, memory problems or any other symptom I experienced prior to having the shunt inserted would indicate there could be an infection or malfunction.

Knowing everything I had learned about my shunt made the results from my six-month follow up MRI in September of 2012 surprising.  I was feeling great and functioning normally – none of the signs my doctors warned me about were ever present.  Low and behold though, diagnostic imaging showed a buildup of cerebro-spinal fluid in the ventricles and a malfunction with the shunt.  But why wasn’t I manifesting the symptoms I had previously, such as trouble with my speech, confusion and aphasia?  Had I been so entangled with the bar exam that I lost sight of how I was feeling and lost my ability to assess myself?  Despite my optimism that all was well, my surgeon decided that it was already time for a shunt revision.

Emotionally, this was a major blow to my recovery process.  I had come such a long way in the span of 4 years and now I had to face the prospect of starting all over.  I feared that the shunt might not be as effective as the first one or that complications which I did not experience the first time around might arise.  I had finally found my groove and was comfortable with my new robotic mind – and now this.  Why couldn’t something, just anything, go right for me for a change?  But hey, nothing good comes out of complaining.  Glad I can find a sense of humor in these things now530e9c97ed7a3e96831b5a77bd3ca664.

On October 1, 2012, I headed back to Yale.  As I was wheeled into the OR and instructed to lie down on the cold metal slab for the surgery, I was again faced with the question of “what if?”  But in my head, I knew everything would be okay and I’d be as good as new in no time.  Before Ashley and my parents had the chance to enjoy the spread of food that the hospital serves them while I’m having my head drilled open, the surgery was done and I was back in my room sleeping off the anesthesia.  Sorry to them all that they were unable to finish their chocolate chip muffins…

This hospital stay was different from my previous stay, however.  Rather than being a complete invalid, I was conscious and alert of my surroundings and life around me.  Then again though, how could I not be?  I was woken up every hour by the nurse and resident neurosurgeon to take my temperature, make sure that I was sleeping, asking me questions such as “do you know what day it is” or “can you tell me where you are?”  My favorite one of that night though was “Chris, have you been walking around?”  I thought to myself, “seriously, at 4:30 in the morning?”  My response: “no doctor, I’m just trying to sleep.”  I had returned to my quick and sarcastic self in no time.

I wrote a text message to my parents at 4:30 that morning to share with them the latest updates.  I felt like my life had become a daytime soap opera.  img_ynhh_tab1Rather than General Hospital, I’d call it “Yale-New Haven – Against All Odds”.

How did my life come to this, I wondered.  But it did and I have learned to accept it because after all, life is full of adversity and I had learned to readjust the sails to go with the direction of the wind.

Free Fallin’

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Frozen.  Locked.  Helpless.

These three words epitomize the feeling I felt one night in March 2009.  My mind froze and my body suddenly and without reason locked up.  The signal of communication between my brain and body were lost.

In talking about my first semester back in my last post, I told you “about halfway through, I was mentally done.”  This was the moment that I was referring to: my life’s latest curveball and the topic of this next entry.

To set the scene, I was reading my family law cases and the time was just about 6:50 according to my roommate.  A couple of minutes later, I noticed that the words on the page began to blur and when I tried to yell for help, I couldn’t.  I could not move my arms, let alone highlight the passage that I had just read.  Within seconds, I was standing next to my desk, spinning in circles uncontrollably and then all consciousness was lost.  My body was jerking and I was having uncontrollable spasms.  My heart was beating faster than I ever heard it and I was sweating bullets.  I felt my eyes rolling to the back of my head and the drool pooling at the corner of my mouth. Eventually, the twitches ceased and I slept.

When I woke up, I was on the ground with the upper half of my body in the closet.

“How did I get here?” I wondered.  Alone and afraid of the unknown, I rose from the floor and walked into bathroom where I threw ice-cold water on my face.  When I looked up into the mirror, I noticed a massive egg in the middle of my forehead.

I tried to recall the events that took place but was unable to remember anything after my manic spinning. I assumed that I was trying to find a place to sit down but lost my balance, fell and landed in the closet.  There were no words; no feelings that I could use to express what was going on in my mind.  It could only be summed up in one word: terrified.

I walked down the hall to my roommate’s bedroom and was greeted with an abrupt “what happened to you?!”

“I don’t’ know”, I replied.

I called home and my mother answered.  I heard her talking and asking questions, but I could not answer any of them.  “I do not know what happened” I continued to tell her.  She asked questions to gain information such as “what was I doing” or “when did this happen?” Again, I had no idea but my mom said to me: “You need to find out how long you passed out for.  It is 7:05.  What is the last time that you looked at the clock?”

Wait, holdup. It was only 7:05?  That means that I had only been out for a few minutes?  Why did it feel like I was in the deepest sleep for days?

I feared the worst.  I thought, “did the shunt stop working or worse yet, did the tumor grow back in a more aggressive manner?”

At the same time that I called my parents, my roommate was on the phone with Ashley to let her know that something was wrong.  Within minutes, Ashley arrived and began asking questions.  Unfortunately, I could not answer any of them. Still, I had no clue.

Now, to think having to be seen at the hospital was a hassle, Ashley brought me over to Rhode Island Hospital for an evaluation. I was without any of my records or past MRI’s and there was really no way for me to explain what happened other than “I was reading, felt weird and passed out.”  The doctors were completely unfamiliar with my medical history and the treatments that I had been through and they had to take my word on what I was telling them.  Fortunately, in my wallet, I carry my neurosurgeon and clinical coordinator’s cards for situations like these.  I remembered that I had them in there so I took out the card, handed it to him and directed him to call the number.  The cognitive exams and strength tests were normal and he assumed it was a seizure and pumped me up with anti-seizure medicines and fluids to hydrate me.  I was kept for further observation and finally released around 3:00 a.m.

The next day, I was back down at Yale for an appointment with my neurosurgeon.  Following the regimen of questions and my responses, he prodded a little further and sent me for a precautionary scan.  Finally, and to my great relief, the cause was confirmed – I had suffered a grand-mal seizure.

Unfortunately however, there was no telling what caused the seizure, but it is not uncommon for someone who has undergone such traumatic brain injuries as I had just been through to suffer a seizure.  But again, I could only wonder and ask myself “why me?”

With my prescription for Dilantin in hand, I was back on my way to school and headed back to classes.  But like any traumatic experience in life, I had conditioned myself to fear having another seizure.  Any evening that I sat my desk reading a case or outlining for class, I was reminded of my incident and felt the fear of “what if?” It’s completely irrational but I was uneasy thinking that something else would derail my quest and cause me to land back in the hospital.

After another email to my professors letting them know of the latest episode, they took it easy on me and I did not get called on the remainder of the semester.  But yet, exams were quickly approaching and I had to control my emotions and pull through.

However, if a seizure was all that I had to deal with, life isn’t so bad I told myself.  I told myself “It’s just another chapter to a great book.”

Or perhaps I’ll need to devote a couple of chapters to this topic….

You Raise Me Up

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One of the joys for me in sharing my story with you is allowing those who have been there with me, through the ups and downs, to share their own story – from their point of view.  As I alluded to a few posts back, my inspiration through my own personal battle was my mom. 

A breast cancer survivor herself, she never missed a beat and always had the most positive outlook on life.  While always keeping a positive attitude and outlook on life, she never stopped being an amazing mother to her three children and wife to her husband.  When I was diagnosed, I could not help but to relate to her and use her positivity as my own inspiration.  I can never say it enough – thanks Mom, I love you. 

As Chris’ mom, I cannot write my version of the story from one moment.  All of the moms out there know that we pretty much all live in the moment or the day that we are in.  So my story and memories are spread out over almost 6 years, and there is not a day that goes by that I do not remember what Chris had to endure through those years.   Actually, I should re-phrase that – it is not only what he has been through, but also what he must go through for the rest of his life (Moms never stop worrying). When we are blessed to have children they are truly in our hearts and our thoughts forever.  From the time they are born to when they are fully grown, we coddle them, protect them, guide and support them, reinforcing the positives, avoiding the negative – as my husband always said “trying to never put them in a position for failure”.  But then, life throws you a curve ball you didn’t see coming, a health problem, a large one, and you realize that you can do nothing to help your child other then pray.

I am so thankful that Chris’ DNA make-up is how it is…he has been through so much adversity and yet with every new issue and problem, he handles it with such a calmness, patience, and confidence that the end result will be fine. 

I could write many different entries in detail about Chris, beginning with the initial symptoms, to being diagnosed, being hospitalized, surgery, rehabilitation, home care, more surgery…here are a few memories that I would like to share.  

Chris began to have headaches around Memorial Day 2008.  As June rolled forward, he began to experience double vision.  After numerous eye exams with doctors who were not concerned, he continued to work throughout the month.  One week prior to his diagnosis, Chris and I drove to Newport to meet with realtors to look for apartments for him to rent while attending law school.  We saw 4 apartments, walked around the town, talked, laughed, and contemplated what we saw…all the while, I knew he had double vision and was not feeling that good.  When I continued to ask him how he felt, he said, “I’m fine, let’s keep looking.”  

Just one week later, the staff at the emergency room at Yale could not understand how he was even functioning.  Their thoughts were that he had an unbelievable tolerance for pain and that his body and brain had compensated for the tumor…the crooked smile, the slight lean to the right when he walked, the double vision…in retrospect, this was the way his body compensated and allowed him to push on and never miss a beat until that scary day of the diagnosis.   The morning of the initial surgery as he hopped up on the stretcher that was going to take him to surgery he showed no fear, just confidence.  “I have to do what I have to do”.  He smiled and said “I’ll see you later “…strength, courage, and determination.  He makes me proud that I am his Mom.

After two weeks spent in the hospital following the two surgeries, Chris was released from the hospital with strict medical procedures that had to be followed at home.  If I did not agree to them, he would have been in the hospital for at least 2 more weeks.  Chris had developed a very serious, potentially deadly, infection and he needed powerful antibiotics that had to be administered 3 times per day intravenously.  The visiting nurse came to the house the first day to show me how to administer the medication.  My routine began at 7:00 AM, then again at 3:00 and finally at 11:00, for 30 minutes each dose.  The medication regimen was supposed to be for 2 weeks, but again the curse of the summer of 2008 kicked in and his blood counts were not good.  Two weeks became four. Per usual, Chris never complained.  He went along with it all. 

A Tuesday in August – it was going to be a good day.  Our visiting nurse from the Veterans’ Nurse Association came to the house in the morning as she always did once a week to check his IV port and change the bandages.  Once complete, she initialed and dated the new bandages.  That evening we had plans to go to our town green for the weekly concert.  It would be perfect for Chris – we could bring dinner, sit back in our lawn chairs and enjoy the music.  We were going to attempt to do something not medically-related for the first time in 6 weeks.  How we were all looking forward to this!  But before we could do that we had to take Chris to his scheduled MRI.  This was the first MRI done since being released from the hospital.  There were forms to be filled out and as he was in no condition to answer this questionnaire, I filled it out for him.  I signed my name as his guardian to whom questions should be asked.  My husband took a conference call in the lobby as I waited patiently for him to come out to the waiting area after his MRI.   I will never forget the way he was smiling as he entered the room (not sure how after another long head-banging MRI).  I rose from my seat and started walking towards him when I noticed his arm and asked “where’s your IV!?”  He calmly replied “She asked me if I needed it anymore, and I told her NO, so she took it out.”  I’m a pretty calm person, but at that moment I lost it.  How could the nurse ask him that question when she knew his state of mind, not to mention that we were there waiting for him?  I immediately marched back in with Chris only to be told that they were sorry for their mistake.  We were instructed to go across the street to the hospital emergency room where the doctor would meet him and replace the IV Port.  I actually thought that although it would be close, we could possibly make the concert, but in the summer of 2008, not much went the way we expected.  Once again, Chris had to be admitted to the hospital and stay the night, where the next day a surgical team in yet another sterile operating room re-inserted the IV Port back in his arm.

Another night in the hospital, the follow up MRIs, the constant questions, rehabilitation, steroids (that made him want to eat non -stop) and then the round the clock intravenous medications, all of this became our life.  I was no longer just his Mom, I was his caregiver, his nurse, his watchful guardian, and in the state that he was in it was as if he was again my little boy of 6 years old.

One of the joys that summer for Chris was to take a shower, as this was just a simple task that he was actually able to do on his own.  “It’s time Mom, wrap my arm up!”  Indeed I did.  He loved it and I dreaded it, but this was truly one of the joys of his day!  I would wrap up his IV Port in gauze bandages, saran wrap, then plastic baggies.  I feared water would get in.  My wrapping routine paid off as I guess I did a good job – no problems!  But, who would ever think that I could be a nurse?  I’ve always said, “What we will do for our children!”

This was the most difficult period in my life.  Watching my intelligent, well-rounded, happy and most determined son who at this time should have been in law school pursuing his dream, and instead I would watch and listen to him as he sat on the front porch with my husband trying to read 1st grade level books.  I would give him spelling tests for simple words, Stephen would attempt to help him find the middle C note on his beloved piano, I would try to help him as he would struggle with the keyboard on the computer to simply find the letter ‘a’ as he was so determined to write to Ashley.  His speech and words came fumbled and slow.  When I would pick him up in the afternoon from rehabilitation, he could never remember what he had for lunch that day.  I would say some possible choices and his answer was always, ”Yeah, I think that’s what I had.”  Yet, through all that frustration and the private tears shed, there was something about him that I knew, somehow, someday he would be back to my Chris again. Maybe it was his determination, struggling every day trying to re-learn and get better.  But for me, my sign was one afternoon as I was preparing to give him his medicine – he looked right into my eyes and said, “Could you please hurry this up today!”   WOW.   That was my Chris.  So clear, so quick, so witty. 

He was definitely coming back.

Me and Mom“While we try to teach our children all about life, our children teach us what life is all about.”  Angela Schwindt