Tag Archives: MRI

Free Fallin’

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

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.”