Tag Archives: gamma knife surgery

Teacher Teacher

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“Chris, you have a very large brain tumor, we think it is benign and the pathology will confirm it.  We need to get you into surgery tomorrow.”

What the hell did this mean?  All of this medical jargon was being thrown at my family and I and we had no clue where to turn or what was happening.  In the matter of minutes, I heard about the plans for the operation, the estimates of my prognosis, what to expect after surgery and rehab.  I was told that the tumor most likely was a neurocytoma, but that in and of itself meant nothing to me.  All I heard was brain tumor.  I heard that as long as there were no complications, I’d be home in a week and that I could resume the life I had grown accustomed to living.  Along with my family, we tried to make sense out of all of these terms and to process what my life would be like after the surgery.  However, what I learned very quickly is that there were no tools to guide us on this journey.   Other than confident doctors and nurses, there is nothing that could adequately prepare you for brain surgery, especially in such a short amount of time.  So as I told my surgeon all these years later, I wanted to help the brain tumor center at Yale in assisting  the patients/families they treat there in creating a  tool, a guide anyone in need on this journey so that nobody else has to go through the pain, the hardships, the trials and errors that my family and I endured over the next three months.

Over the past year, I have worked with a team from the Yale Brain Tumor Center in creating this very tool.  While it is still very much a work in progress, I am thrilled by seeing this idea come to life and providing a resource to all who need it.  On the Neurosurgery website of the Yale School of Medicine sits “Brain Tumor Patient Education“.

You will find facts about brain tumors, though not all types.  You can read about what it’s like to “meet your team” for the first time, and this goes well beyond your surgeon and assistant.  We have provided  general information about the various types of treatment and have ensured that the content is presented in a way that anyone can read and comprehend it.  We hear the word “surgery” but it’s so much more than an operation.  There are the pre-surgery procedures a patient has to undergo; there are things a patient should know about during surgery; and finally, life after surgery.  I am sure that reading this could be scary, but it has been put out there to help.  I woke up from surgery and had great difficulties.  My cognitive functions were gone and I was not expecting that.  However, had I have had the chance to know about these things before hand, I would have at least been mentally prepared for the risk.  You will also find information for radiation and chemotherapy here.

Finally, and most importantly for me, was the creation of “life after a brain tumor” to make for a wholly educated patient.  There are helpful links that a patient and their caregiver can visit; resources such as local support; the latest on clinical trials; etc.  Our team went so far as to break it down by life after a benign brain tumor; life after a malignant brain tumor; and life after a metastatic brain tumor.  On each, you will find helpful information on everyday living – driving, work, surveillance (continuing MRIs), eating and drinking, nutrition, traveling, financial counseling, etc.

I am excited to continue working with this talented group of nurses and researchers in putting this “guide” together.  While nothing on this site should be construed as medical advice or opinions, I do hope it is helpful for that newly diagnosed patient and/or family as they embark on this terrifying journey.  I have met so many remarkable people who have undergone each of these different experiences, as well as the caregivers who live this battle with them. Hopefully, with this education, the journey will not seem so bad and you can be a little better prepared than we were.

I guess it is fitting that I write this post just before my first-ever one year MRI (as you’ll read, the intervals for followup varies on a case-by-case basis).  Stay tuned for an update!

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…

Sitting, Wishing, Waiting (Reprise)

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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.

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No Disguise For That Double Vision

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Here I am yet again – Yale-New Haven Hospital.  The stale, sterilized smell of hospital hallways and plastic identification bracelets has become second nature to me over the last five years.  I am about to enter an entirely new realm of brain tumor treatment – gamma knife surgery.   My doctors are confident that this could be the final step to curing my tumor.  As I await my treatment with a monstrous metal helmet drilled into my head (yes, straight out of Silence of the Lambs – just call me Dr. Lecter – fava beans, anyone?), I think about how far I have come and look ahead to the struggles I will always face.

Prior to my diagnosis in the summer of 2008, I had been experiencing double vision for two years on and off.  I made an appointment with my optometrist, who was not concerned and concluded I had an inflamed optic nerve.  Prism glasses were prescribed to me and within two weeks, I was no longer seeing twins everywhere I went.

I started law school that fall and quickly realized that it lived up to everything I had heard – reading, analyzing and then more reading.  In that first year of law school, I scored average in all of my classes, though I struggled through my turn when I was called on in classes to “brief” the case.  It was something I could not understand at the time – I had read the case, took copious notes and talked about the case with my friends.  Luckily for me, I made some great friends and met the girl I would wind up marrying, and together, we all helped each other get through the first year with great success.

Upon returning home in May of 2008, the problem I experienced the previous summer re-appeared, but this time, it was much worse.  In addition to constant headaches, I was waking up and going to bed with the double vision, whereas in 2007, it was not until halfway through the day that the double vision would ensue.  I went back to my optometrist in hopes of him investigating this further, but he dismissed the problem and said it was common to have your eyes “eat up the prism”.  The remedy?   A stronger prescription!   Thankfully for me, after reading way too many medical cases gone wrong in school, I decided to challenge this diagnosis and demanded to be seen by an expert.  A neuro-ophthalmologist agreed to consult with me.  Within days, I was seen and after a quick evaluation, he immediately noted that something was drastically wrong – a large mass was pressing up against my optic nerve.  However, to be certain, he sent me straight to Yale-New Haven Hospital to have an MRI.

On July 1, 2008, I was notified that the results of my MRI were in and that an immediate consultation was necessary.  My parents and I returned to the neuro-ophthalmologist where the devastating news was provided to us that my MRI showed a large mass the size of a grapefruit sitting at the center of my brain.  I was to be transferred immediately to Yale-New Haven Hospital where Dr. Joseph Piepmeier, head of Neuro-oncology, and his staff would be waiting for me.

No one could have prepared me for this news and the obstacle I was about to face.  At the time, the medical staff at Yale was amazed that I was able to walk, talk, or even function.  For me, I would have never imagined how quickly I would need to grow up at the age of 24.

Five years later, here I am, back where I began and I am more hopeful than ever.  All things considered, I have been lucky – and this is why I have decided to start this blog.  To share my experiences, to educate, to inspire, to hopefully reach out to even just that one person who needs it…because after all, grey matters.