All posts by chrisgreymatters

I Get By With A Little Help From My Friends

From the day that I was diagnosed to the weeks after the shunt insertion and still to this day, my family and friends played such a huge role in my recovery.  I think we too often take for granted how important having a reliable support group can be – but they are so much more than that.  Having someone to laugh with or who can take your mind off things can go a long way during a period like this.

For the first time in three months, I had consecutive weekends filled with socializing and excitement.  On Sunday, September 14, 2008, the Giants were playing the St. Louis Rams.  I was downstairs watching the pregame show when the doorbell rang.  My mom yelled down to me: “Chris…there’s someone here to see you.”  All I wanted to do was the watch the game!  Well when I went upstairs, at the door was my friend with a tray of food.  I looked at him and then looked back at my parents – did I miss something?  One by one, all my friends came over to the house to watch the game with me. Surprise! I was in shock but elated nonetheless.  I just couldn’t believe that everyone had come by just to spend the afternoon with me and hang out like we had grown so accustomed to doing.  I had not been in a social setting with so many people in a long time and was uneasy at first.

My scars were still not healed, so I put on my baseball cap backwards to cover them up and I was ready for a great afternoon.  The last time I had seen everyone all in one place was the afternoon prior to the emergency surgery to remove the hematoma that almost took my life.  On that day, I was a shell of the person I was on game day.  My friends looked at me in amazement – it was awesome.  We joked, laughed, ate everything in sight and as if that day weren’t bittersweet enough, watched the Giants were victorious.  And speaking of joking, out of nowhere, I heard a couple of friends doing impressions of Arnold Schwarzenegger, but what do you think the quote was?  None other than “It’s not a tuuuuumor!” from Kindergarten Cop.   Some things just never change….

I was so excited that they came by to break the ice and hang out with me, but what I remember most of all is that they did not let it bother them that I was still not 100% and looked somewhat like Frankenstein.  They all could’ve gone to the sports bar to watch the game but instead they came over to watch the game with me.  Those are true friends and a sure way to make anyone feel good about themselves, no matter the situation.

The game ended too soon but I was already busy looking for plans for the following weekend.  I talked to Ashley almost every free chance I had the following week and practically invited myself up to Rhode Island for the upcoming weekend.  I had been cleared to drive but Ashley, being the nervous Nellie that she is, pleaded that she come down to Connecticut to pick me up.  Believe it or not – I turned down her offer and drove.  This was such a liberating feeling and something I had to do in order to regain my confidence with everyday tasks.  To this day though, she still shakes her head when I remind her about that decision.

Driving across the Newport Bridge and headed north towards Bristol, I had flashbacks to the last time I was in Newport – the afternoon walking the town with my mom searching for apartments to rent for the upcoming year.  As I was having these thoughts, I quickly realized how fortunate I was after living through such a harrowing life experience.  I then crossed over the Mt. Hope Bridge and felt like I was back where I belonged.  Coming over the bridge, I could see the red, white and blue painted lines on the street.  Over to my left, there was the law school.  I took a good long look at it. I told it that I’d be back, but not yet.  First things first – visit Ashley and the rest of my law school friends.

The last time that I had been with everyone all in the same place in this setting was the day of our last final.  If you’re unfamiliar with law school, you enter as a 1L and spend the duration of your 1L year with the same group of people.  I found this to be beneficial because many of our classmates became very close friends with each other.  We got each other through the many ups and downs.  And on the day of our very last final, after all appellate briefs had been written and argued and final exams completed, it was time for a proper send off at one of the local pubs.  So when I saw everyone together for the first time since that day, it was bittersweet.

I was still wearing my hat backwards to cover the scars and somewhat nervous to be around such brilliant people.  I had just spent my summer reading Dr. Seuss books and memorizing farm animals on flash cards while everyone else spent their summer in law offices.  “What was this going to be like?” I wondered.  But then I realized – I’m a warrior and though I was nowhere near as smart as those I associated with, I was now mentally tougher.  There was a “Section C” party at one our classmate’s house and there I was – laughing, talking and having a good time just as I had done months earlier.

Friends are always there to pick you up when you’re down and help you through the tough times.  For me, I was quickly shown two weekends in a row how important friends and support groups are and can be.  And that’s one of the reasons I’ve decided to now give back.

I recently reached out to the Connecticut Brain Tumor Alliance to discuss ways in which I can pay forward the gift that I have been given.  While I can never provide a medical miracle, I am able to be there to listen to those who are undergoing what I went through and show them that through their adversity, things can and will get better. But for those friends, I would be a shell of the person I am today.

To them all – thank you.  You each played a profound role in my recovery and showed me the power of friendship…and for that, I am forever grateful.

Here I Go Again On My Own

So you’re probably wondering whether the story is over now.  Well, fortunately for you but unfortunately for me, it’s not.

Once I was released home with the shunt in place, I was in a “wait and see” holding pattern.  Sure, things were going really well immediately after the procedure but everyone, myself included, was curious what the following weeks and months would bring.  Just as quickly as I had my cognitive functions restored, my life was placed back on hold some more.  Nevertheless, I was not deterred and was prepared to move onward in this fight.

Good riddance to the powder I used to have to add to my liquids due to this cough thing I developed at some point.  Goodbye Dr. Seuss, thanks for the memories!  “Red fish, blue fish”– how about “no more fish”?  And how could I forget to say goodbye and thanks for the torment from those daily quizzes about news stories I’d have to read and try to write about.  It was all quite easy to push this off to the side and focus on getting back where I had left off.

There was plenty of stuff to do to occupy my time.  I had to close the doors on certain things but also needed to regain my independence with various tasks.  I knew that the road back would not be easy by any means, but I had to be optimistic and hopeful.  I wanted so badly to return to Rhode Island and rejoin my classmates and be a 24-year-old kid again, but I grew up immensely in that two-month span.  One thing at a time…

To start, the rehabilitation center wanted to see me again so they could conduct an independent evaluation and “close their file” on me if they determined there was nothing more for them to do.

For once, I was excited to go to rehab.  I’m not typically one to boast, but I was chomping at the bit to go there as I continually recalled the conversations between the therapists and my family where it was doubted that I would ever recover.

I’ve said it a lot, and I’m saying it again – I knew all along that I was in there.  So on the day that I returned to Gaylord, I could not wait to walk in there and show them the “real” me.  When I stepped off the elevator, amidst the buzz in the common area with patients coming and going, I saw my speech pathologist wrapping up her session with a fellow speech therapy patient.  When she saw me, she eagerly waved and indicated that she would be right with me.  I raised my chin proudly and exclaimed, “Take your time, no problem!” Yea, this was going to be a great day.

During our one-on-one time, she asked the typical questions – this time however, I answered each with ease. Her face said it all.   “Go ahead, pinch yourself” I felt like saying, “but this is no dream.”  I proclaimed that a medical miracle had occurred.  In all my years of living, I have never seen someone look at me in such awe.  But that’s the reason I’m sharing my story – to exemplify the beauty and amazement of the brain.  As I said a few paragraphs ago, my ability to recover was doubted.  I have grown accustomed to hearing people doubt the ability of the human brain.

There was still one last thing she wanted me to do before signing off on my release from therapy.   As part of my homework during the months of July and August, I had been keeping a folder of worksheets and journal entries detailing my daily activities to submit it to her (looking back on that folder now, it was full of nonsensical and illegible papers).   This was her method of tracking my ability to find the words to express myself, but also to see where I was on a cognitive scale. I had become accustomed to hearing her say what the assignment was and then having forgotten it completely by the time I even arrived home. This time though, the assignment was to write the story of my recovery.

My eyes lit up and I said in my head “a ha! A theme!”  Though I hate to borrow from “A Christmas Story” again, I must.  I was having flashbacks of the many moments from the past two months, just as Ralphie had of Old Bart and his Red Ryder BB gun when Mrs. Shields asked her class to write “a theme – what I want for Christmas”.   It’s sick, I know…but I love that movie! But I digress…

I could not wait to get writing.  For the first time in a long time, letters had meaning to me again and the words just poured out onto that paper.  The picture on the top was an assignment I completed prior to the surgery…the one below is my essay I wrote days  surgery.  Note the dates on each…unnamedphoto(8)

I couldn’t wait to hand-deliver it to her and when I did, she read it there and then.  She smiled, shook her head in shock and awe and said there was nothing further for her to do.

Things went very similarly with the physical therapist.  Not only did I regain my cognitive functions but I also regained strength on the right side of my body.  The facial droop had diminished, my handwriting drastically improved, I was able to walk on the balance beam again and could lift the five-pound weight ball with my right arm.

Did I ever think I’d be freed from own brain?  At times, no.  But with hard work and persistence, the brain can adapt to any set of circumstances and overcome even the toughest of obstacles.  Even still, while I was able to write a short story and converse, as well as use my mental energy to think, I needed to put all this to practical everyday use before I could even attempt to get back to law school.

Challenge accepted.

Brainstorm – Part Two

Will I wake up normal?  Is there a chance that this surgery could lead to unintended consequences?  What if they can’t get the shunt in place and find that there is no plausible way for me to have the device inserted – does that mean this is my life forever?  Wait, what about my song?

Within a matter of minutes of being taken into the OR, Dr. Piepmeier greeted me on the cold slab of metal and said the team of doctors was ready to get started and that he’d see me in a little while.

Now, before I go any further, I have a request.  Think of a moment in your life where your hopes for something completely outweighed the realistic expectations of it happening.  Once you have that moment, you can continue reading.  See if yours measures up to mine…

Great, here we go again. 10…9…8… Sweet dreams…and knocked out I was yet again.

Once I was out of surgery, I was wheeled down the hall back to the ICU to sleep off the anesthesia.  Now, you have to understand that nobody in my family ever conveyed the odds and percentages of the surgery to me so I did not know what to expect coming out of this.  Regardless of the odds, I knew it could certainly help me. In the midst of being woken up by the doctors and nurses, I recall feeling “different” somehow; I was able to recognize that the thoughts in my head were clearer and I was better able to understand the conversations that were taking place around me.  However, it was still too early in the recovery process for me to test myself but I had a fleeting thought that perhaps my progress would now move along much quicker.  But then again, I was still in such a fog that I was not able to fully appreciate what had actually taken place and knew I was being delusional.  I was in and out from the anesthesia so I took the time to sleep, heal and recover.  Still though – there was this nagging feeling that maybe I was back to my old self.

When I had finally fully woken up and come to my senses, I again felt like I was in a dream.  Things around me suddenly made sense and I was able to put 2 and 2 together to understand that I was now a bionic man with a valve system in his brain to help me function in society.

Come to find out, my dream was no dream – it was reality.  I felt just as I had prior to the time when all of this began.  I was alert.  I was watching TV and playing on my phone.  Yes, you read that right – I was using my phone to read the mass of emails and text messages that had piled up from family and friends the past two months.  And then the moment that I had been waiting for had come – my family had arrived.

I heard my parents’ voices as they were talking with the doctors and nurses outside of my room before coming in to see me…I eagerly awaited their arrival.  My dad entered the room first (here comes my moment):

I greeted him with an enthusiastic “good morning, Dad!”  Then my mom came in and I said “good morning, Mom! How are ya?!”

The looks on their faces were priceless…faces that I’ll never forget.  I found that the moment was beyond satisfying.  What an absolute whirlwind.  Not less than 12 hours ago, I couldn’t say my own name, let alone say “hi” to my parents.  They continued to engage me in conversation and I was actually doing it!  Though my response time was slow, I understood all the questions being asked and was able to respond.  The sound of my own voice had never sounded so good.  I had shown my family and myself what I knew in my head – I was still in there and simply needed some manipulation to break free.

And when the entourage of doctors rolled in, they bombarded me with the usual questions.  This time I was able to tell them my level of pain in a comprehensible tone, replied that “yes, I do have a headache” and “three” in response to “how many fingers am I holding up?”  Once they left, in came Dr. Piepmeier and Betsey.  He looked at me in awe, but nonetheless asked me how I was feeling.  I replied “great!” I remember him just looking at me, almost as if he thought he was dreaming but nope – this was no dream.  When my sister and brother came to see me, I greeted them all as well.  Overnight, I had gone from a shell of my old self to almost as good as new.

Walking around the hospital hallways with my mother that day, we walked past a diagram of the brain and I stopped there with her to show her what had been done to me during the surgery.  As I was explaining where the valve was inserted and where it was draining to, a voice behind chimed in and said “very impressive Chris.”  It was Dr. Piepmeier.  That moment is also one I’ll never forget.

Two days later, my paperwork was being prepared and I was released – free to go home.  When I got home, one of the first things I wanted to do was sit down at my piano and play.  I was hesitant at first, but it was something that I had to do.

I sat there, placed my fingers on the keyboard and I started to play.  Without even thinking about it, that beautiful sound was coming out.  Like it was yesterday, I began playing my composition and it was if I never stopped playing.  I played the first few bars of the song and into it I went – remarkably, I had played everything I had written previously, but this time it sounded really good.  Over the next few days, my determination to finish my song was completed and all I needed was a title.  And then it hit me.  With all that had just taken place in my brain and the further brainstorming I was doing to find a title, I titled the piece, very simply “Brainstorm”.

Foreigner’s “Double Vision”…Barbara Streisand’s “Send in the Clowns”…Ice Cube’s “A Man’s Best Friend”…Manfred Mann’s “Blinded by the Light”…Louis Armstrong’s (or my preferred version sung by Stacey Kent and the song my mom and I danced to at my wedding) “What A Wonderful World”….Ben Folds’ “I Am The Luckiest”…Patrick Watson’s ”The Great Escape”…Billy Joel’s “Keeping the Faith” and “Movin’ Out (Anthony’s Song)”…Michael Jackson’s “ABC”…John Michael Montgomery’s “Sold” (Hey Pretty Lady Won’t You Give Me A Sign)…”Take Me Out To The Ballgame”…”Somewhere Over The Rainbow”…Pearl Jam’s “Come Back”…Jack Johnson’s “Sitting, Wishing, Waiting”…Josh Groban’s “You Raise Me Up”…Avicii’s “Hey Brother”

“Brainstorm”

All of my posts’ titles have been these songs or lyrics borrowed from them.  They express the chapters of my life and relay the emotions of my story.  For me, music is everything – it is one of my passions.  And miraculously, I had it back.

Without more, here it is.  Brainstorm © 2011

chris cd cover v3_1

 

Brainstorm – Part One

By now, I hope you have noticed one common theme in all of my entries – if you haven’t yet, you’ll have to wait until part two of this post for the revelation…

At the age of 8, I began playing the piano and taking lessons. I grew up with the piano that my mother took piano lessons on and which I learned to play. Those of you who know me, you can attest to the fact that when I put my mind to something, I am determined to do it and do it well; it was the same way with my piano lessons.

After returning home from Rhode Island in May of 2008, I began writing an original composition. When I played the song, my parents asked me what it was and I replied that it was a song I was writing but that needed an ending. My family proposed some names and ideas, but none of them were what I was looking for – I needed to brainstorm.

As Stephen touched upon in his toast at my wedding, one day in late August, the doorbell rang and it was our good family friend, Caryl. Sadly I say that I do not recall much else about Caryl’s visit other than me playing the piano for her. But looking back at it, I am beyond grateful she asked. Up to that point, I had not played too much as I grew far too frustrated with myself and my inability to play. But she did not care – she knew I had it in me and just believed in me. With Caryl and Stephen watching and waiting for me to do something, I sat down at the piano and took a deep breath and began to play. I managed to play as much of the song as I had written. I’m sure it was chock full of wrong notes and whatnot, but I had done it. A major accomplishment? No. But an accomplishment for me? Absolutely.

The date was sometime in late August 2008 and things were still going downhill for me. I was making absolutely no progress in my recovery. My ventricles were still clogged from debris where the tumor sat and the hydrocephalus was acting as a crux in my quest to recover.  After all, that’s what hydrocephalus is – a condition in which cerebrospinal fluid (CSF) builds up in the ventricles. Thus, the time had come to decide whether we would pursue the implantation of a shunt.

If you’re wondering what a VP shunt is, fret no more. The easiest way that I can describe it is as a device that allows excess CSF built-up inside the skull to drain into the abdomen.  One incision is made in the back of the skull to insert the reservoir and valve deep within the brain and then one incision is made in the abdomen to place the drain where the CSF would release. Tubing was implanted under my skin to connect the valve to the drain. So, to connect the dots…when the pressure of CSF builds inside the brain, the valve opens, the excess fluid flows down the drain through my head, into my neck and eventually drains down into my abdomen. Brain juice!UntitledDecision Time

Up to this point, my biggest decisions were what I would eat and which couch I would lay on for the day.  When it came time to ultimately decide whether to pursue the shunt operation, I made my voice heard. I was yearning to break free. I knew this was my only hope and the best option.  However, my parents had some remaining questions….

On the Saturday before Labor Day, I had a call with Dr. Piepmeier.  Karen and I were debating back and forth the pros and cons of the potential shunt surgery, which had been whispered about since the initial surgery.  The concern was that when Chris was initially admitted to Yale almost 8 weeks ago, he was already suffering from hydrocephalus.  This was the most puzzling part of the situation to the medical staff…how was he even functioning?  After 6 weeks of rehabilitation, almost no progress was made and the latest MRI showed that the ventricles were blocked and swollen, and the hydrocephalus was still present.  Dr. Piepmeier and I then discussed the options, which were: (1) stay on course to see if the healing process would correct the situation or (2) to have the shunt inserted.

We then talked about odds and percentages.  After insertion of the shunt, approximately 80% of the patients will see improvement in their cognitive function within 6 months to up to 2 years…15-20% regain total cognitive function within 6 months…and a very small percentage, 1-2%, has an immediate cure overnight.

We also discussed the potential risks.  We were advised that there was potential for the development of a blood clot in the brain, swelling in the brain, infections and seizures. In addition, we were also told that there is a risk that the shunt could malfunction at some point and also that the shunt system would need to be replaced once, twice or even three times throughout Chris’ life.  But just what if, in a miracle circumstance, Chris was the 1-2% case and the procedure worked without any unintended consequences and aided his recovery process?

I then asked him what I still believe was the right question: “if Chris was his son, would he do the surgery?”  His answer was an immediate yes.  My vote was now to do the surgery.

With all that I had been through up to this point, I felt that I had nothing to lose. I considered this to be the easiest decision I had been asked to make up to this point. I understood all of the risks and was realistic that even if the procedure went without any issues, it would still be a long road ahead. I knew that it was likely that no results would be seen for quite some time, but I knew my body better than anyone. The flash cards, ABC chart, workbooks full of addition and subtraction problems, the paper we all used in 2nd grade to practice writing in between the lines, etc. were simply not working. But more importantly, I was getting tired of being trapped inside my own body.

It’s Go Time!

On September 8, 2008, I underwent surgery for the implantation of the VP shunt. The surgery was scheduled to take place early in the day which meant prep for the surgery began very early and which also meant I had to begin fasting the night before. As luck would have it, the procedure continually got bumped as other cases had taken priority over mine…I was getting restless…anxious…and extremely hungry. Finally, around 4:30 in the afternoon, I was wheeled into the OR…

 

Hey Brother

In keeping with the tradition of having a family member write an entry, I turn this over to my brother Stephen.  However, as you can see, I did not ask him to write an entry.  Rather, I have decided to post his toast/speech as the Best Man at my wedding.   Give him another few years and then look for him on the Grammy’s.

“The water is sweet but the blood is thicker.”  At first glance, my brother Stephen may seem like he cares about a few key things: food, sleep and music.  But quickly you learn (and as you will soon see) that he may be the deepest of all our family members, and I love that about him.

A special thanks to Lenny for capturing this moment!  And I can’t thank you enough Stephen and Mary for this tribute.

You Raise Me Up

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

Sitting, Wishing, Waiting (Reprise)

After a long day at Yale-New Haven Hospital, the results are in and Ashley and I have decided to share today’s news in a joint post…

Waiting.

It always seems like we are waiting – in line at the grocery store, for a much-needed vacation, for work to be over.

What bothers me most about this premise is the precious time we squander while we impatiently yearn for the cashier to just hurry up.  All that time in between rushing from here to there or waiting for something you are looking forward to may feel mundane, but it’s our time.  Chris and I learned at a very early age that time, mundane or not, should not be wasted.  In any event, it seems to me that often times the built up anticipation while we await “the next big thing” is better than what we were waiting for in the first place.  So why do we wish our lives away?

My favorite religious concept is the Buddhist idea of mindfulness. Essentially, it teaches that as people, we should strive to enter a mental state of present consciousness – to be aware of what is going on around you at that moment and to be at peace with it.   Let go of the past and don’t worry about the future – and when you reach this state of mindfulness, you will be happy.  This notion makes perfect sense, but I am admittedly one of its worst violators.

Today was a huge day for Chris.  As he earlier alluded to, a small regrowth of his tumor led to a gamma knife radiation procedure, which the doctors hoped would prevent any further growth and eliminate the need for surgery.  Today was his 3-month MRI follow-up, which would determine whether or not the gamma knife surgery was a success.

I’ve become accustomed to waiting in the hospital now.  It’s a perfect example of mundane time that I wish away – worrying about the results and just wishing to get out of there as soon as possible.  Today, while Chris underwent his MRI, I sat around and was a complete nervous wreck.  Besides the fact that I was trying to prevent a full blown anxiety attack from the loud noises emanating from the MRI machine, I was consumed with worry about the test’s results.  I knew that regardless of the outcome, we were equipped to handle it as we have in the past – but the thought of this not working and continuing to battle regrowth was just a terrible thought I was having trouble shaking.

But after all of those negative thoughts, a positive one finally emerged.  What if it did work?  This truly could be the end – well, it will never be the end because we will monitor this the rest of our lives, but as far as the initial tumor and procedures, this could be it.  I smiled.  I decided for the rest of my time waiting for the MRI to be over and for the results appointment thereafter, I would consume myself with the positive thought that there was a possibility that his tumor is at bay, not that the procedure didn’t work. In that moment, I understood mindfulness and how it can amazingly affect your experiences.  I didn’t want to let the present go, because my present thoughts meant there was hope.  For the first time ever, I embraced waiting.

And now I hand the reins over to Chris, because I think it’s his place to share the news with you…

As I stepped onto the elevator and headed up to the eighth floor where I would learn the results, mixed emotions ran through my mind.  While I was always confident today would bring nothing but good news, I had my doubts.  Let’s face it, we all have doubts.

But today, I just knew.  After taking my temperature, blood pressure and weight (oh yea, and the nurse also asked to see my ID bracelet just be sure I was who I claimed I was for the umpteenth time today), I was brought into yet another waiting room where Dr. P would walk through the door on the adjacent wall any second.

Not a minute later than the nurse walked out, the door re-opened…

A thumbs-up and a big smile.  “We got it!” he said!  My surgeon was genuinely excited and began telling me how well everything looked on the scans.  He eagerly brought me over to the computer where I saw the MRI comparison from December to today.  To my great relief, I saw but a small remnant of what the regrowth had been late last year.  Looking at the two scans, side-by-side, I could not help but to simply smile.  Although I will have to be monitored for the rest of my life, it was the first time, in five long years, that I feel like this road through hell has met its demise.

As the news was broke, I reflected back on the road I traveled to get to this point and the travesty that was brought into my life – the ups and downs, the laughter and sorrow.   And while I am realistic and recognize that this will be “my” battle for the rest of my life, I could not have asked for anything more than having such a fantastic medical team who truly has my best interests at heart.  But what is more, I have the best and most supportive family and friends a 30-year old can ask for.

champagne

Sitting, Wishing, Waiting

For the benefit of my readers who are fighting this battle and after mulling over whether to do what I’m about to do, I have decided to fast-forward to the current date…but only for a moment.  As a very brief overview and a story that I will later write about in full, at my six-month MRI last October, a very small regrowth of the tumor was discovered.  My team of doctors huddled and determined that the best treatment option was gamma knife surgery, a targeted radiation treatment, which took place in December….

So why did I decide to tell you this now and bring my story up to date?  Because tomorrow is the big day – my three month follow-up to ensure that no regrowth has occurred.  I have been feeling great and am confident that the doctors tell me there is no new growth.  But if I have learned anything, it is that no matter the outcome, you can never lose hope no matter.  I’ll roll with the punches just as I have for the past five-and-a-half years.  It’s just like the poster in my office says – “We cannot direct the wind, but we can adjust the sails.”

Come Back

Anyone who has siblings can relate to this next entry written by my older sister, Jackie.  Growing up, we would always get under each other’s skin and annoy the hell out of each other (apparently, I am still guilty of that).  Over the years, however, things changed and we became extremely close.  That summer, Jackie was always there for me, doing whatever she could to assist and while I was unable to express it, I heard the concern in her voice and could see she that she cared.  To those on the outside, it seemed as though I was not in my mind.  Little did they know, I was cognizant of my surroundings.   I just couldn’t express myself – I was still there, the same annoying brother.  I could imagine Jackie saying “come back, come back”.  Funny thing is, I had never left.

It’s my turn to write an entry for Chris’ blog – I have been mulling over what I would write for weeks, preparing for this moment.  I have so many thoughts, memories and emotions…they come in waves and bits and pieces.

I’ll start here…Wayne, Chris, Stephen and I went to see a Pearl Jam concert at what used to be the Meadows.  Chris wasn’t feeling 100% but we went anyway.  I remember Stephen, who was just 16 at the time, point out Chris’ eye.  We all noticed it but no one said anything, all of us secretly hoping it would just go away.  Stephen innocently pointed out how one eye seemed to cross but Chris brushed it off and we left the concert.  Chris assured us he had an upcoming doctor’s appointment to have his eye checked.  Of course, like everyone else, Chris included, we chalked it up to the idea that he needed a stronger eyeglass prescription and he needed it immediately.

Fast forward a few weeks later to what would be Chris’ worst nightmare. I can remember it like it was yesterday – where I was, the task I was doing, the outfit I was wearing (obviously) and the phone call from my father.  I left work within seconds and raced to Yale and could barely process what was happening to my insanely brilliant brother who helped me pass quite a few general education classes at UConn (yes…it’s true).

The next few weeks, Yale became my second home.  I was there every day after work, on lunch breaks and every free moment I had.  I read books, I sat with my parents – we just sat and waited and waited.  We waited for Chris to get better to come back to us.  But things got much worse before they got better.

I can vividly remember everything about the day my parents called to say I needed to come now and see Chris because he wasn’t doing well.   The fear in my parents’ voices resonates with me to this day.  (Ashley also touched on this day in her blog post; it’s funny, until she wrote about it I had completely forgotten I spoke to her.  As I said before, things come in waves and bits and pieces).  After our visit, my head was spinning but I needed to stay strong for my younger brother, Stephen.  We left the hospital, picked up our dog Chip and drove to my home in Branford; after all, Chip was a part of our family and he needed to be with us.  We got out of the car and cried and cried and waited and waited.

We later learned that a subdural hematoma had formed in Chris’ brain, explaining the symptoms he showed of a stroke and thus the need for the immediate emergency surgery.  Though Chris had survived that latest round, he contracted an infection and was released home with a grim prognosis.  In the following weeks, I observed Chris and my gut told me he was still in there but that he was trapped in his body.  He was a fighter and I had to believe he would come out of this thriving.

There were a few instances that brought me to believe this theory – here is just one story I wish to share that assured me that in time, he would be okay….

You might have to know Chris to understand this story, but I will do my best to explain.  Chris, while he is most often serious in his daily life, also has quite a silly side.  He is sarcastic, humorous, slightly annoying (sorry but you are) and finds the most ridiculous and idiotic things hilarious; once he starts his laughing fit he cannot stop.  That summer the epic film (haha), Tropic Thunder, starring Ben Stiller, was released in theaters.  Wayne and I took Chris to see the movie as we thought something funny was just what the doctor ordered.  While Wayne and I were unsure Chris would be able to understand what was going on or follow the movie, Chris certainly proved us wrong.  In my opinion the film was “eh, not so great” but definitely one the old Chris would find hysterical.  I can’t recall what scene it was but Chris started laughing quietly at first and within minutes was rolling into his old uncontrollable laughter, the kind of laughing so hard that there are tears and sore abs the following day.  Wayne and I were right there with him – we went from laughing at the scene in the movie to just laughing at Chris laughing (this was common when Chris had a laughing fit).

With tears in my eyes, I remember texting my parents from that movie at that moment filling them in on our silly movie adventure – Chris is okay.  He is going to be okay.  I just knew it.  It was clear he was in there and he was just trapped…he would be back, I had no doubt.

PIC

Somewhere Over The Rainbow

As part of my ongoing quest for positivity, I never stopped believing my life would resume where it had left off prior to my diagnosis.  Even though it was now late August and my peers were in week two of classes, I was determined to get back there with them.  But not only was I determined, I whole-heartedly believed that I would be back at some point to resume my law school career.  For those who know me, this belief, or what some may call “stubbornness”, should come as no surprise as I have always been persistent and one to argue a point even when I know I am wrong.

At my request, a meeting was set up with my parents, the Assistant Dean of the law school and I.  The purpose of the meeting was to inform the dean of my progress and basically let her know how I was doing.  All along, I fully and firmly believed that law school was still a possibility for me and that after I can make some progress, I would be back.  Not so fast.  I walked into a conference room and was unable to say a word when she was talking to me.  “Maybe it is just nerves and I need to relax?” I thought to myself.  Nope.  The entire meeting was full of confused and muttered responses…as well as no responses at all.  On top of my cognitive deficits, the nerves and anxiety of my surroundings left me completely unable to make a positive impact and prove that I had what it took to make a recovery and return to school in pursuit of my dream.

Suffice it to say that it did not take long for the dean to ask to speak to my parents in private for a moment.  I did not have the mental capacity to even process what they could have been speaking about, but I knew that it had the potential to be bad… and it was.  When they came back into the room, the dean broke the news to me that I never expected to hear: based on my deficits and lack of progress, my pursuit of earning my juris doctorate degree was officially over and that I should return home to live a comfortable life.

I wanted to jump up on the table and rattle off the elements of negligence and go into a long-winded spiel reciting my oral argument I gave three months earlier.  I couldn’t though and I watched as my parents’ faces had turned from pessimistically optimistic to completely hopeless and sad.  All that I had worked so hard for over the years was gone – the tumor had robbed me of everything.  The two-hour ride from Rhode Island back to Connecticut was full of tears and sorrow by all of us.

It was déjà vu all over again…

After graduating cum laude from The University of Connecticut in 2006, I sat for the LSAT and applied to five schools.  After rejections to four schools and being waitlisted by UConn for the entire summer before learning on the day classes were to begin that I had been rejected, I felt completely helpless.  One of the schools I applied to was Roger Williams University.  Prior to receiving an acceptance or rejection from the school, I was being inundated with mail from the school regarding financial aid, the pro bono work done there and letters from the Office of Career Development.  Given my low LSAT score, acceptance was a long shot but all of the mail left with an ounce of hope.  The Assistant Dean of Admissions invited me to come up and see the campus, go in for a tour and meet with the career development office and you better believe that I accepted it.  With my mother, the two of us made the drive up to Rhode Island.  On a good day, the drive is about two hours but on that particular day, due to the pouring rain and wind, the drive turned into three.  Figures.   Pachaug Trail - "Welcome to Rhode Island sign" at Beach Pond, Hope Valley, RI

During my meeting with admissions, the dean wanted to discuss my low LSAT score along with my high grades at UConn.  “How do I describe the disparity” he wanted to know.   I couldn’t.  Well, the answer was buried in my brain but nobody knew at that point nor were there any reasons to inquire.  On the drive home, my mother and I both recapped the meeting and tried to find any positives to take home with us, but there were none….except that the rain had stopped and over the highway, a full rainbow had developed.  My mother took this as a sign that though things had not been working out for me, that rainbow was certainly an omen of good things to come.

Unfortunately, a short while later that summer, I received a small envelope from the school and inside was a letter from the Assistant Dean of Admissions notifying me that I had not been accepted for that year but encouraging me not to give up hope.  Well fortunately for me, I did not give up hope and remained determined to master the LSATs.  I spent the year working for a law firm in a variety of roles and then went full-steam ahead with an LSAT preparation course.  My hard work had paid off and I improved my score immensely.  I reapplied to all five of the schools, but the moment I received my acceptance from Roger Williams University, I notified them of my acceptance and could not have been happier.

Back to the present day, here I was, back in the car heading home after a horrible meeting at Roger Williams.  But life is funny like that.  I believe that everything happens for a reason, both good and bad, and while that reason may not be apparent at the current moment, it will become evident at some point in time.  For me, the reason I did not get accepted after meeting with the school on that rainy day and the long drive with my mom was that my acceptance a year later allowed me to enroll with Ashley and find my counterpart…the one who lived this battle with me moment I left her that voicemail notifying her of my diagnosis.

So what’s my point, It’s that you cannot give up.  Keep going, keep searching and keep fighting.  Through it all, you will find your rainbow.