The Confirmed Recurrence and Yet, Another Brain Surgery

In my prior post (https://braincancerbabe.com/2016/06/22/the-dreaded-word-recurrence/ ) I wrote about my suspected recurrence.  Well, that was confirmed in June 2015.  I say “confirmed” recurrence, although whether the lesion was indeed “cancer” can only be truly confirmed with the pathology report following surgery and removal of the lesion… but you get what I’m saying.

It is strange that I do not remember much about when I was told I would have to undergo yet another brain surgery.  Everything about Round 1 continues to be so clear in my head: the initial diagnosis, the first surgery, treatment, etc..

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This time around, I again met with my neurosurgeon in preparation for the surgery.  He was comforting in saying that the lesion was very “superficial” and remained very distinct.  The only way I can describe it is that the lesion hadn’t spread out like tentacles into other surrounding areas.  It would be a more simple surgery to just go in and cut it right out.  Okay.  That sounded promising.

I also clearly remember the phone call when my neurosurgeon’s nurse gave me the date of the surgery.  It was less than a week from the time my oncologist had confirmed that the lesion was indeed growing, indicating the recurrence.  However, I don’t really recall the emotions I felt, or any of the preparation leading up to the second surgery.  Maybe I’ve blocked it out subconsciously, or it is just part of my memory I’ve lost due to the trauma to my brain.  Maybe it’s both.

Furthermore, I didn’t have much time to think about the second surgery.  It was scheduled so quickly, thankfully.  I just wanted it done and over with – move on!

I do recall sitting back on the days leading up to the surgery and thinking, “Is this really happening again?  Another surgery?  Wasn’t one brain surgery enough?”  However, my doctors were confident that since I had come out of the first surgery so well, and had basically returned to my normal life, I would come out of the second one just as well.  That was a pretty reassuring thought, honestly.

From what I remember (and again, maybe I’ve just blocked it all out), I handled the situation pretty well.  One theory that has stayed with me is that my worst fear had come true – the cancer had come back.  So, if I got through this okay, I would have conquered that immense mental and physical battle.

All of my family and friends were blown away.  They were so frightened, but all I kept saying was, “I’ll be okay.”  I meant it too.  I had so much confidence in my medical team.  I knew what to expect this time.  Funny enough, it was the minor things that I knew were coming while I would be admitted in the hospital that I dreaded.  I hated the idea of the daily shots in my stomach to prevent blood clots.  I would be undergoing brain surgery, yet that’s what bothered me about the future hospital stay!  I also despised the gauze bandage turban they had wrapped around my head after the first surgery to reduce the swelling.  The thought of that turban actually made me angry.  I don’t know – maybe it was mind’s way of protecting me from the truly frightening consequences.

So, June 30, 2015 came along and I was once again reporting for duty – “Good morning.  I’m having surgery today.”  Again.


The Dreaded Word – Recurrence

I think it’s safe to say that every single cancer patient fears that dreaded word – recurrence.  We may not think about it every single moment, of every single day.  However, every survivor I have spoken with over these last 2 years admits, “It’s always somewhere in the back of my mind.”  In this awful world of cancer, is there really anything more frightening?

Cancer Attacks

Going back to my original diagnosis and the beginning of the “cancer chaos”, I technically remained “cancer free” following my surgery in April 2014.  Yet, I then underwent treatment for cancer, obviously in an attempt to remain “cancer free.”  I recall asking my radiation oncologist, “So, what do I say?  Do I actually have cancer?”  She looked at me with a questionable smile and said, “Well, you don’t have a tumor, but you are being treated for cancer.  So, there is really no easy answer to that question.”  Fair enough.

I HATED it when people said, “Oh that’s great!  You’re in remission!”  The other comment that made my skin crawl was, “So you’re cured!”  Hmmm… not so much.  I don’t blame them.  People who haven’t lived through this really don’t truly understand.  They mean well and only want the best for me.  It is frustrating though.

Anyway, 2014 rolled on.  MRIs all looked clear.  I was back at work.  No more treatment.  Sure, I was still on anti-seizure meds, but those weren’t going away any time soon.  I still had physical therapy, but I was exercising regularly and could do every workout I wanted.  Yes, I remained in therapy every so often.  Cancer is a true trauma and a little professional help goes a long way.  I was heavily involved in charity organizations, which gave me so much strength and purpose.  I was meeting so many other amazing survivors.  Life was really pretty much back to normal, although we all know it was the “new normal.”

The fear of a recurrence never went away.  However, it didn’t dominate my thoughts.  There were even moments I didn’t even think about cancer!  I almost forgot about it… almost.

So 2014 came to a close and I decided to celebrate the end of the hardest year of my life in the Caribbean with my husband.  We sat on the beach, sipping champagne.  We ate A-mazing food.  We watched the fireworks over the ocean on New Year’s Eve.  God, life was good.

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We rang in the new year in style, but it was back to reality.  And boy, did reality strike like a ton of bricks.

In February 2015, ironically just after my 35th birthday, my MRI began to show an enhancement at the surgical area where the original tumor had been removed.  It was extremely small, so my doctors could not absolutely confirm it was indeed a recurrence.  We would just have to wait and see.

So there it was – that dreaded word.  My biggest fear staring me in the face.  Yet, I didn’t even have enough information at that point to even confirm, yes, the tumor is back.  I would be stuck in limbo for the next few months until my next MRI.  The hope was that the enhancement would remain stable, indicating that it was likely just a side effect of the radiation.  However, if it increased, then, well, it was likely it was a recurrence.

Simply by reading the title of this post and it’s category, the recurrence was eventually confirmed.. but I’ll get there.

Continued Hospital Stay

Release from the Misery of the Neuro-Observation & Continued Hospital Stay

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The day after the surgery, when I guess they realized nothing incredibly serious would happen, I was moved into a private room with a roommate.  I remained there another full 2 days.  I know I was in incredible pain, but I will never forget and always worship my day nurse.  She is not only my favorite nurse, but one of my favorite people!  God, did she help me get through those awful days.

The pain/pressure wasn’t controlled too well and I was purely miserable.  The body forgets the actual feeling of pain, but we remember it happened.  To add to that pain, my fear of nighttime continued.  As a blessing, my night nurse would walk the halls with me, once I could walk of course, while we talked about our lives, our relationships, work, what-have-you.  She is also on the list of top nurses.

A very tough moment was the first time they got me out of bed.  Again, I was an incredibly active person when this all happened.  It was insane to me that the simple act of getting my legs over the edge of the bed to stand was so hard, even though “hard” really can’t describe it.  I began to cry, saying, “I can’t do this.”  I felt so defeated by all of this.  What a blessing I had a wonderful nurse’s assistant who encouraged me saying, “I wouldn’t let you do this if I thought you couldn’t.”  So, with that, I garnered my strength and stood up.  I can frankly say, it was one of the greatest feelings and accomplishments of my life, and I’ve been pretty damn successful in everything I’ve done.

And so, with time and fantastic physical therapists, I was able to sit in a chair.  I graduated to using my IV stand to make it to the bathroom.  Soon after, I began to walk the halls although I couldn’t do the entire perimeter yet.  That came soon though.  During that time, I colored a lot.  I colored a beautiful cloth flag-type thing – I don’t know exactly what to call it – filled with butterflies.  I hung it on my IV stand, and walked and walked down those halls.  I remember people smiling as they passed by me.  I hope that picture of butterflies gave them some comfort and a tiny bit of happiness.  It did for me at least.

My hospital has a recreation center full of games, arts and crafts, books, painting materials, etc.  It’s a bit cheesy, but its such a valuable asset for patients.  It also has an outdoor patio.  Frankly, it’s a gift.  After being cooped up in a hospital bed, just minutes of sun and fresh air feels miraculous.  However, the first time I was wheeled onto that patio, I had a complete breakdown.  I think the joy of that little bit of freedom overcame me and it hit me like a ton of bricks all that I’d just been through.  I cried and cried until I asked to go back to my room.  Thankfully, I was able to pull myself together to eventually go back there.

Probably most important to my recovery was my attitude.  I didn’t want to stay in that awful bed.  I wanted to sit up.  I wanted to walk.  I wanted to get the hell out of there!  Sadly, my roommate did not have that same motivation and complained quite a bit when the staff tried to get her up.  Sometimes, she outright refused.  Her nurses would also tell her to call them before she ate anything because apparently she had diabetes or at least very high blood sugar.  She never listened.  In fact, her family would sneak her heavy, unhealthy food.  I also overheard that when she would actually be released, she would be admitted to a rehab facility.  Honestly, I felt damn lucky I wasn’t in that situation, or possessed her overall attitude.  I don’t blame her whatsoever.  We all handle cancer, and especially brain surgery, in our own way.  I believe it’s one of the most difficult experiences in the world!  I was just different.

Another overwhelming moment came when occupational therapy (OT) arrived.  The therapist asked me to draw a clock.  I just couldn’t.  My mind wouldn’t compute what a clock was and particularly, how to draw it.  I was asked to repeat several words.  Again, I couldn’t.  I graduated every school with honors, survived law school, passed two bar exams, yet I couldn’t do things kindergarteners learned.  However, the therapist determined I actually wouldn’t need OT.  She was sure it would all come back because frankly, I was fully communicating and was basically myself.  (Even now though, I have a hard time with that damn clock!)

My recovery progressed and every time the doctors evaluated me, I was on the right track.  Despite it all, I was actually doing great.  Remarkably well, in fact.  So, after the day of the surgery and 2 full days afterward, I was ready to be released that 3rd day.

Operation Day and the Surgery

Operation Day!

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I vaguely remember waking up that morning, getting to the hospital and walking onto the surgical reception floor.  I also vaguely remember, practically whispering, “I am here for surgery.”  I waited in the reception area with my husband and parents before they called me back.  My mother would not sit still.  So, I was the one who kept having to calm her down, never mind that I was the one facing surgery.

I was the first scheduled case, so there wasn’t too much time before they called my name.  I walked into a whole new world.  The pre-op room was huge with lines of curtained-off beds.  Could all of these people seriously be going into surgery this morning?  I felt very lucky to have a nurse from Ireland.  It led to easy-going conversation about what parts of Ireland we were all from, and what brought us all to the States.  It helped me forget just a bit where I was and what I was facing.  However, I stayed very quiet.

At that point, I was still scared of needles and IVs (oh, how times change!).  So, they were not fun.  The anesthesiologist came back to talk to me.  He was also comforting and calmed me as best he could.  However, when the moment came to send me into the operating room, I completely and utterly lost it.  I was hysterically crying and found it hard to breathe.  The nurse immediately told the anesthesiologist that they needed to IV some meds ASAP.  It probably wasn’t a good idea to send a patient into the operating room like that.

The meds did work fast, thankfully.  However, I remember being wheeled down the hall and into the vortex of the operating room.  I could hear the MRI machine, as it was yet a noise I was used to – oh, that would come with time.  I stared up at all of the fluorescent lights.  I saw numerous people hurriedly walking around in scrubs.  Then, I saw the anesthesiologist looking down on me.  He asked me to start counting, but I think I got to about the third number before I lost consciousness.

The Surgery

Obviously, I remember nothing of the actual surgery.  That’s surely a blessing, as I’ve heard some patients actually do recall slight moments.  As far as I understand, they used a twilight anesthesia so that they could test my neurological functions with the MRI.  I vaguely remember it coming up, but I can’t confirm that at this moment, nor do I really want to.

So, I underwent a 3-hour craniotomy, defined as “a surgical operation in which a bone flap is temporarily removed from the skull to access the brain.”  The entire tumor was removed, referred to as “full resection.”  A titanium plate was placed in the area and I was then all stitched up.  They placed an awful, horrible gauze turban around my head to prevent swelling.  Amazingly, just a line of hair was shaved, so it was barely noticeable once the turban was removed.  (Getting that turban removed after 3 full days was an incredible physical and mental release).  Then it was off to the post-op recovery room, where I would remain for several hours.    

The List – The Chronology of Cancer Chaos

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As I delve into the blogosphere and start to read other blogs, I’ve seen that many bloggers list their treatment history.  It was frankly something I had never thought of, but I really think its great!

So, as best as I can, here is “The List” – the chronology of my cancer chaos:

January – April 2014

Episodes of sensations in my left leg began – My left foot would essentially become numb with electrical-type sensations traveling all the way up my leg.  Several episodes, in which the sensations traveled all the way up my left side into my face (Later learned these were seizures).

Thursday, April 3rd – appointment with primary care physician – brain MRI and blood tests ordered

Saturday, April 5th – blood tests, but no results;  MRI yet to be scheduled – insurance holdups, of course.

Sunday, April 6th – “Big daddy” grandmal seizure

**Can’t recall the initial consult with my neurosurgeon, but it was around April 10th and later followed by a torturous 2-hour+ functional MRI (A particular scan, which required me to repeat words, move various parts of my body, etc.)**

April 17th – 20th

Initial craniotomy with complete resection of tumor with 3-day admission in the hospital.  Discharged April 20th; Diagnosis of Grade III anaplastic ependymoma

May 27 – July 7th – 30 doses of radiation

April 2014 – January 2015

Eight months of physical therapy for neurological deficits on my left side; Spinal tap (Awful!!!); All clear scans

During this time, life eventually seemed to normalize; Returned to work part-time in September 2014; Began to exercise 4-5 times a week and focused on a healthy diet; Became physically stronger than I had been before cancer

February 2015 – Brain MRI began to show “something” – suspected recurrence

February – June 2015

Follow-up MRIs continued to show the same image; Second spinal tap; By June, the image/lesion had grown and recurrence considered “confirmed” (needed official confirmation with pathology report) and second craniotomy scheduled

June 30th – July 3rd

Second craniotomy with complete resection of tumor with 3-day admission in the hospital.  Discharged July 3rd; Confirmed diagnosis of recurrence of Grade III anaplastic ependymoma

July – September – 5 Avastin infusions

August 4th – 10th – 5 high-dose radiation treatments

December 2nd – December 3rd

Seen by physician assistant for pain and redness at surgical/radiation site; Admitted overnight for potential infection; MRI and blood work showed no signs of infection

As an aside, I had a noon flight on December 3rd to Colorado – I told every person I encountered that I was making that flight!  I was discharged at 9:00 a.m., literally rushed out of the hospital and made it to the airport with time to spare, but with my hospital band still on!

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December 28th – December 30th

Reported to UCC for 5-day migraine; admitted for monitoring of symptoms and medication control; MRI and blood work showed no signs of any issue; Resident tried to push a spinal tap, which I outright refused and which my oncologist agreed was unnecessary (Always have to be your own advocate!)

January – March 2016

Mild sensations begin again in left leg; memory appears to be getting worse; referred to Occupational Therapy (OT) and formal cognitive revaluation

March 31, 2016 – Brain MRI shows “something” – undetermined if the image is radiation necrosis or a 2nd recurrence (apparently the image is more diffuse, as opposed to nodular like a tumor); put on steroids

April 2016 – Begin OT for cognitive issues

May 2nd – May 5th

Following pictures I sent to my oncologist and neurosurgeon of my surgical/radiation area, I was directed to report to UCC for immediate admission for a suspected infection and wound breakdown; Titanium plate was actually exposed

Surgery ordered; Infectious disease called in to evaluate; Plastic surgery called in to partner with neurosurgery team during surgery to clear out infection and create skin flap

MRI showed no change from March 31st scan

Steroid taper was completed, unknown to my neurosurgeon

Discharged May 5th to complete pre-surgical testing and for a night at home to “rest” before surgery scheduled for May 6th

May 5th (Happy Cinco de Mayo!!!) – “Big Mamma” seizure in the middle of the night and return to UCC  ** Believed that the failure to advise my surgeon of the steroid taper contributed to the seizure**

May 6th12-hour surgery to clear infection in the brain, remove titanium plate, excise portion of my abdomen to create a large skin flap to cover area of infection and all of the insane intricacies of finding, moving around and reconnecting blood vessels, arteries, etc. (These doctors are geniuses and I cannot even begin to understand all they did)

May 6th – May 13th

Hospital stay including post-op observation, neuro-observation and standard admission

Multiple, daily doppler ultrasound testing of skin flap to ensure active blood flow and function of the arteries (or, making sure this complex system of the flap, blood vessels, arteries, etc. were working and my body wasn’t rejecting it)

Mutliple, daily arguments over my medications (too annoying and tedious to list) and a complete lack of commincation from the “neuro team” (this nebulous group of residents/fellows/ghosts), who were making major decisions about my in-patient care with NO consult with my treating doctors)

PT and OT evaluations and sessions – out-patients sessions ordered

Discharged Friday, the 13th – Yes, that’s right

TO BE CONTINUED….

                                                                                                                                                                            

Throughout these past two years, my treatment and care have involved scans, medicine administration, etc., but also other practices over various courses of time.  These all include:

  • Regular follow-ups with oncologist and seizure neurologist
  • Regular follow-up MRIs varying from every 6 weeks, to every 3 months, to every 6 weeks again, and so on
  • Therapy with psychologist as well as consults with a psychiatrist for anti-anxiety medication maintenance
  • Couples therapy with psychologist and social worker (This was a God-send!)
  • Cognitive therapy evaluations for multiple issues, including memory loss, inability to focus and multitask, etc.
  • Massage and acupuncture sessions
  • Exercise and fitness to keep my body healthy, strong and to relieve stress
  • Meditation (or as best as I can do it)

I’m sure I’m missing some, but thankfully, I’ve got a LOT of time to update things here.

 

 

 

 

Having a Seizure

I could probably come up with a more witty, more descriptive title for this post, but the experience of having a seizure is too horrifying to encapsulate in just a word or two.

I’ve now suffered two seizures in my life, just about two years apart from one another.  I’ve had some intermittent “seizure-like episodes”, which frankly would be classified as  seizures, but for me they aren’t even in the same realm as the other two seizures.

The first was a grand mal/generalized tonic-clonic seizure – the dramatic type that people generally associate with the term “seizure.”  I remember it starting, but obviously, I had no idea what was happening.

I had been having some strange sensations on my left side, almost like a feeling of electrical pulses or currents creeping up from my foot into my leg.  On one or two occasions, that feeling traveled all the way up my left side into my face.  Of course, I later learned that these were in fact seizures.  However, I thought I was perfectly healthy, in tip-top shape.  I never imagined in my wildest dreams that these episodes were seizures, let alone the first signs of brain cancer.

As for the grand mal “big daddy” seizure, it began with that same creeping feeling beginning in my left foot.  It started traveling up my side and very suddenly, my chest became extremely tight.  There was almost this warming feeling/rush too.  It’s a sensation I find hard to describe, but it’s what they call the “aura” before the seizure.  Although I could technically still breathe, I began clutching my chest.  At the time, I was wearing a baseball cap and lifted it up thinking maybe that would help give me some air.  It was at that exact moment I demanded 911.

Just after that, I lost the ability to speak and all control of my left leg.  I actually recall thinking to myself, “Why is my leg jerking like this?  I’m not telling it to do this.”  Almost like an out-of-body experience, I was looking down at myself and seeing this happening, but having absolutely no idea what was happening.  While I don’t remember the specific chronology, around the same time my left arm and head began violently jerking.  It was then that I lost total consciousness.

Apparently while I was unconscious, but the seizure still continued, my contacts popped out of my eyes.  The portion that happened while I was awake was violent enough.  I still cannot fathom what it must have been like at its peak (I guess if that’s the right term to even use).

I was taken to the E.R. by ambulance.  Looking up at the ceiling and the florescent hospital lights flashing by while I was being wheeled into the E.R., I remember the EMTs asking me my name.  I didn’t know it.  They asked me if I could tell them where I was.  I couldn’t.  All I could utter was, “I don’t know” over and over again.  Even though I can only recall a very brief portion of that time, one thought that still haunts me to this day was the feeling that this was the end.  I was going to die.

After being seen in the E.R., I learned that there was a lesion on my brain, which had caused the seizure.  Obviously, after several more tests and ultimately brain surgery, it was confirmed that I had cancer.  The strange thing though is that the seizure scared me more than cancer and I believe it has left me with so much more PTSD.

Following the surgery, did I worry the tumor would recur?  Of course.  However, if that did happen, I believed it would be a progression that I could sort through/deal with/face over a period of time.  Yet, I would never know when a seizure could happen.  I had no control over where I would be, who I was with, what I was doing, etc.  There was nothing I could do to ever prepare myself.  Sure, I took several seizure medications, but there was always that chance.  Also, for quite a long time, I believed every little sensation was the beginning of another seizure.  I truly lived in fear.

As with most things in life, as time went by, things got better.  I didn’t worry every time I left the house about what could happen if a seizure came on.  I worked out without the fear of collapsing.  My doctors cleared me to drive, although I never traveled more than a few miles on my own.  I even began feeling comfortable on the subway again, which had constantly frightened me.  (Being enclosed in an underground subway car, filled with people who aren’t 100% likely to rush to your aide, without any easy access to medical attention, was the cause of many anxiety filled days).

Ironically, just a few weeks ago I thought back on that intense, overwhelming fear of a seizure and truly relished in the fact that I had almost entirely overcome it.  And then…

As I sit here today, I am not even two weeks out from the second major seizure of my life.  So much of the fear has once again reared its ugly head, and now there’s more.

I don’t know which of the two seizures were more frightening, but as of now, the second one is winning.  If the first was “big daddy” this one was “big momma” and we all know, momma is usually scarier than daddy.

Without fully detailing the chaos that surrounded the second seizure, I had been tapering off steroids in the weeks prior due to some vague blur on my last MRI.  (It’s believed that the taper contributed to my second seizure, as no one had thought to inform  my neurosurgeon of the taper and he would have never reduced the steroid had he known, but… anyway).  During that time, all of the radiation treatments had caused my cells to die, breaking down the skin around my surgical site, and causing a major infection.  It’s never fun to see your titanium plate exposed!  So, after days in the hospital, I was finally scheduled for surgery on a Friday.  In an effort to let me rest, sleep in my own bed and prepare for at least another week or two in the hospital, I was sent home Thursday.

I went to bed Thursday evening having to mentally and emotionally prepare for my third brain surgery.  As if that wasn’t enough… I woke up at some point in the middle of the night, violently sitting up.  There wasn’t a second thought in my mind.  This was a seizure.  I don’t even think my body and mind had time to experience the “aura.”  I just knew immediately what was happening.

As I sat up, I yelled at my husband to wake up, screaming, “I’m having a seizure.  Call 911.  Get my Ativan!”  The poor man was barely conscious and yet I was in desperate need of help.  The seizure didn’t begin too intensely even though I realized what was happening.  I was even able to continue yelling at my husband to follow my orders!

The twitching began in my left leg exactly as last time and started to creep up my left side into my left arm and hand.  However, the spasms weren’t bad enough yet because I was able to actually open my pill box and take some Ativan.  Almost immediately after that though, it became very ugly.

My entire left side began to violently twitch and jerk.  My left hand became clawed and my toes were curled under.  My speech became extremely strained until I lost it completely, as I began to literally snort and drool.  I was able to use my right hand to steady myself against the bed, at least keeping me safe from falling off.

I think one of the strangest sensations during the whole experience was that I remained completely conscious, knowing exactly what was happening and worse, what could happen.  My doctor had always told me that if I ever had another seizure, I would have to do my very best to stay calm.  I never thought that would ever be possible, but this time, I did say to myself that I needed to breathe and hope that this would pass.  Frankly, my attempt at staying calm utterly disappeared at the moment I could only communicate by snorting.

And just as it had started, the jerking and twitching began to slowly subside.  I could talk again, thankfully.  However, my entire left side was basically dead.  I sat there trying to move my left leg.  Nothing.  I tried lifting my left arm.  Nothing.  I picked up my arm with my right hand, but it just flopped onto the bed like a dead fish.  My fingers also remained clawed.  I was completely convinced I was paralyzed and a hundred scenarios rushed into my head, while I imagined all the things I’d never be able to do again.

Once the EMTs arrived, I was able to communicate fully, but the sensation on my left side had yet to return.  After a few minutes of oxygen, I began to feel what I thought was another aura, but thankfully, it was actually the sensations in my extremities coming back.  Slowly, I was able to move my leg and my arm, although they were clearly weak.  I was also able to move my fingers around and no longer felt like a clawed lobster woman.  Enough time had passed that it didn’t seem likely another seizure would come on.  So it was back to my hospital, hours early for my third brain surgery with the added bonus of a sudden seizure.

It’s now almost two weeks later and once again, my 12-hour surgery is not what keeps me up at night – it’s the fear of another seizure.  I hope and pray that the feelings that consumed me after the first seizure subside again after this experience.  Unfortunately, it’s going to take some serious therapy, meds and strength of mind to get back to where I was just weeks ago.

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“So, you’re going to need a little bit of brain surgery.”

IMG_1402Two and a half years ago, I took this photo while sitting on Maya Beach in the Phi Phi Islands on my honeymoon in Thailand.  At that point, I was living a pretty damn perfect life.  I was married to the love of my life.  I had amazing family and friends.  I had a challenging, professional career working in New York City.  I led an active, healthy lifestyle.  Yet, I knew how to throw down a few cocktails and let loose.  I am Irish.  I know how to have a good time…

Basically, I was the “girl who had it all.”

Then, on Sunday, April 6, 2014, everything changed in the matter of a heartbeat.

While sitting in my nail salon that Sunday, reading what was likely some trashy gossip magazine and being completely mindless, I began to feel a strange sensation in my left leg.  I had been experiencing this sensation for a few months, but I had naively chalked it up to some kind of ambitious yoga stretch that I obviously hadn’t yet mastered.  First mistake – do not ignore your body when it is clearly telling you something is wrong!

In those prior months, I had simply expected the sensation to just go away.  I brushed it all off.  I mean, I didn’t have time to worry about something that seemed so minor.  I couldn’t work a doctor’s appointment into my demanding schedule!  Who has the time?  However, I soon began to have frequent episodes where my entire left foot and leg would go completely numb.  I would have to stop walking, or running, or doing whatever it was I was doing, until the feeling subsided.  I worked in New York City.  I was constantly in a rush.  This sensation was just getting in the way.  It was an annoyance that I finally admitted needed to be checked-out further, just so I wouldn’t have to stop on the subway steps with hordes of people behind me bothered that I was holding them up.  And yes, that is what finally brought me to see my doctor… not a true concern for my health, but my frustration in this inconvenience to my daily routine.

So, I eventually sucked it up.  On Thursday, April 3rd, I saw my primary care physician.  While relaying my symptoms, my doctor seemed clearly concerned.  Due to a family history of multiple sclerosis, she ordered an MRI of my brain, which would likely be scheduled for the following week.  I sat there in tears.  How could some numbness in my leg be a possible sign of MS?  I had seen what MS had done to my family members.  I suddenly began to imagine my future and it scared the hell out of me.  Little did I know what would come just days later.

Anyway, there I was that Sunday, having a “me day” at the nail salon, attempting to forget about that doctor’s appointment and the nagging feeling that Yes, something was definitely wrong.  Ironically, as I sat with my nail girl, I began telling her about that appointment and what my doctor feared.  At that moment, the numbness in my foot came on and began traveling up my leg, into my left side and down my left hand.  I asked her to give me just a minute, convinced the episode would pass.  Suddenly, I began to have trouble breathing.  In sheer panic, I told her to call 911.  For the next 30 seconds, I lost all control of my extremities.  I was violently shaking, unable to speak.  Then, I lost consciousness.

I later learned that I had suffered a grand mal seizure.  When I eventually returned to my nail salon, the girls explained that the seizure had been so violent, my contact lens had actually popped out of my eye.  By some miracle, one of the salon employees had experience with seizures, and was able to care for me until the EMTs arrived.

The next thing I remember was being wheeled into the ER.  My immediate thought was, “I am dying.  This is what dying is like.”  I recall the EMTs asking me my name.  I didn’t know it.  They asked me what was happening, how I was feeling.  All I could muster was, “I don’t know.  I don’t know.”  I have no idea how I got into a hospital gown or into a hospital bed, but when I finally realized where I was, I screamed out, “Please call my husband.  Where is my husband?”  Thankfully, the nail salon had been able to contact my friend, who was then able to call my husband.  Life lesson – never underestimate the value of a great nail salon!

When my husband arrived in sheer panic, it was like something out of a movie.  He rushed into the hospital room, throwing back the curtain.  I had never seen him look so scared.  He is the strong, silent type.  This had clearly rocked him to his core.  I immediately became hysterical.  In between gushes of tears and attempts at catching my breath, all I could say was, “I don’t know what is happening!”

In a way, as strange as it may seem, I feel blessed for how the seizure happened.  I wasn’t driving.  I wasn’t alone.  I wasn’t, god forbid, on the subway where people likely would’ve just assumed I was some crackhead, who had a bad dose.  I was somewhere safe, where everyone knew me.  I also wasn’t the one, who had to make the devastating calls to my family and friends to tell them what had happened.  Where would I have found the words?  I also cannot overemphasize the glory of anti-anxiety medication!  The ER doctors were kind enough to administer those soon after I was fully coherent, so I was at least highly medicated when I learned what had actually happened.

A calm, soft-spoken neurologist eventually came into my hospital room, which was now filled with family and friends.  I recall him putting his head down, eyes to the ground, telling me, “Your scans show there is some kind of lesion on your brain.  Whatever it is, it will have to be removed, and it will have to be removed sooner rather than later.”  Frankly, I hadn’t even realized I had undergone any scan.  News to me!  I also couldn’t fathom that just days earlier I had believed I was in perfect health.  Now, I had something in my brain that had caused my entire body to entirely shut down, nearly killing me.  What was going on?

The next few days in the hospital continue to be a blur.  Again, meds are amazing.  I don’t know how I would have even begun to process everything without being highly medicated.  It is amazing what our minds do remember though.

One of the few, crystal clear memories I had was getting our family lawyer to draw up legal documents.  One such document was a Living Will to ensure that my husband and family would not have to make the dire decision to keep me alive under extenuating circumstances, like ya know, becoming a vegetable only being kept alive by machines.  As an attorney myself, it didn’t even occur to me what the significance of those documents meant to my family.  For me, it was just business.  For them, it was devastating having to think about such possibilities.  I even had my two dear friends, who are also attorneys, come to sign and witness the documents in the hospital.

Another significant, overwhelming moment during those next few days was trying to arrange brain surgery – definitely not something I had ever in my wildest dreams thought I would have to do.  You know that saying, “It’s not brain surgery.”  Well, it was, and now I was faced with the biggest decision of my life.  Who was I going to trust with my life, to cut open my skull and remove something in my brain?

Another frightening lesson I have learned through all of this is that the doctors you choose really do mean life or death.  While the ER doctors were extremely competent, I would not have trusted that hospital to perform brain surgery.

Through various connections, I was beyond fortunate enough to get an appointment with one of the top neurosurgeons in the country.  He is my hero for so many reasons, but one of my favorite things about him is how he broached the topic of surgery.  I distinctly remember him walking into the room during our first consult.  He was not wearing a lab coat, but in “business casual” as you’d say.  I got the sense immediately that he was not going to be one of those pretentious, “holier than thou” physicians, although given his credentials, he would have all the right to be.  He introduced himself casually and sat down on the chair next to the exam table.  With his legs crossed, sitting back, he looked at me and said, “So, you’re going to need a little bit of brain surgery.”  All I could do was laugh.  At one of the worst times in my life, there I was… laughing.

And so, in just a few short days, my life was turned upside down, inside out.  My life would certainly never be the same, but thankfully I’ve got a lot more life to live and a lot more to write about.