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.

Post-Op and the Dreaded Neuro-Observation Area

Post-Op

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I woke up in the post-op room, but I don’t remember feeling any pain whatsoever.  Frankly, I felt high as a kite!  Those were some gooood meds!  My whole family was shocked because I was wide awake, cracking jokes and acting as though everything was fine.  My surgeon came back to see me and I continued to joke telling him, “I’ve had worse hangovers!”  (My relationship with my neurosurgeon has always been light and sarcastic, which I love)

The nurse eventually told my family I needed to rest and once they left, I don’t remember much of that post-op room except for feeling strangely comfortable there.  (Again, they were some gooood meds!)

Post-Op Neuro-Observation

It was when they moved me to the neuro-observation room that hell broke loose.  The meds began to ware off.  I could feel the intense pressure of the awful gauze turban.  (I HATE that thing)  It was also nighttime.  I had a horrible fear of nighttime/bedtime suffering from years and years of insomnia.  I also had new nurses, who I particularly didn’t like much.  It was dark in there.  I was closed off in my own little section, curtained between three other patients who themselves had just survived brain surgery.  It was not a pleasant space.

The worst came when they advised I would have to undergo a post-op MRI.  It was then I suffered the first panic attack of my life.  I’ll be honest.  Looking back, the nurse and the nurse’s assistant did not handle it well.  The nurse said in a slightly obnoxious tone, “She’s having some sort of panic attack.”  The nurse’s assistant, a very large and aggressive woman, held me down.  Kindly, they at least IVed some meds and I did calm down.

Thankfully, and because my neurosurgeon is A-mazing, there was a total resection of the tumor.  I was technically “cancer free” which is a term I still don’t apply to myself even now.

Although I understand it and accept it now through therapy, my husband refused to stay with me that night.  Was it the best, kindest thing to do?  No.  Did he handle it well?  No.  However, I forgive him.  It was all just too overwhelming for us.

So, after he left, the second panic attack of my life came on.  I don’t remember much of it or how the nurse handled that one, but I know it happened.  Maybe I’ve blocked it out, for good reason.

Eventually, it came time to leave that dreaded area.  I hate that I’ve returned there two more times since.

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 Night Before Surgery

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The Night Before

Knowing I was heading into possible, life-threatening surgery the next day, my friends and family were quite a mess.  I found myself trying to manage them, as opposed to dealing with my own worries.  However, one of the most beautiful moments was when a close friend came over.  As she was leaving, she handed me a frame with a photo of our group of girlfriends from our recent trip to the Caribbean celebrating my birthday.  She teared up, but she spoke the most simple, wonderful words, “We love you.”

That night, I decided to google information on brain surgery.  I had been soooo good at avoiding Google, but I couldn’t help myself that night.  I was just too incredibly frightened of the unknown.   I came across some disturbing photos of actual surgery.  Oh no!  I was not going there!  However, I found a blog (I wish I could remember what it was) of a young woman, who detailed her experiences leading up to and after her surgery.  It gave me so much comfort, so I am truly thankful for that little indiscretion from my google ban.

I really don’t know whether I was simply numb to the fact that I was facing surgery, or all of the meds, or just simply blocking it all out, but I wasn’t actually that nervous once it came time to go to sleep.  I recall my husband commenting how calm I seemed.  Who knows?  The mind is a powerful thing after all.  I popped a sleeping pill and slept until that horrid alarm went off sometime around 4:00 a.m.  No turning back.  The time had come.

 

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.

 

 

 

 

So, Freddy Krueger And I Walk Into A Bar…

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It’s officially a week and a half since my 12-hour brain surgery/plastic surgery/infectious disease surgery/whatever it is that just happened to me.

I know that there will be several (okay A LOT) of posts that will cover what has happened over the last few weeks, but in a simple, non-medically trained nutshell… all of my radiation treatments caused my brain cells to die, which then caused the skin cells around my surgical/radiation area to breakdown, causing a serious infection that led to my titanium plate being exposed.  Enter an infectious disease team, a plastic surgery team and my established neurosurgery team…

I was advised that the infection would obviously have to be surgically cleared out, that my plate may or may not have to be removed, and that a portion of my stomach would have to be taken to create a new skin flap to cover the area.  Little did I know that I would wake up with my stomach now making up just about half of my head, as well as a giant incision starting from the top of my chest down my abdomen.  Oh, and my bellybutton is also now about 6 inches off from where it was just a few weeks ago.

So, I feel like Freddy Krueger and I walked into a bar and well, whatever happened, he clearly won.

I am thankful beyond words that I am alive, that I am recovering remarkably well and that I am even able to write this post, but… this time, the vanity thing is tough.

I feel like a monster.  While I know rationally, it will get better – the swelling will reduce, the bruising will fade, etc. – it’s just really, really hard this go around.

With my first surgery, you wouldn’t have known I’d even had surgery.  My hair only began to fall out a few months later due to radiation.  I thought that was hard.  However, I got a fantastic hairpiece (clip-on, not even a full wig) and absolutely no one could tell I had a bald patch hiding underneath.

Time went by and my hair started to grow back enough that I didn’t even need the hairpiece.  I only needed to style my hair the right way and all was okay.  I even left the hairpiece hidden in a drawer to get knotted and matted, thinking I really wouldn’t need it again.  How naive!

So, along came the second surgery and more hair had to be shaved down, but honestly, it wasn’t too bad.  I wasn’t going to cry over it.  Yet, once again, radiation came around.  I was actually away on my First Descents trip when my hair began falling out in huge clumps.  I stood in the bathroom at our camp site just crying while running my fingers through my hair as it immediately fell out.  Thankfully, being on a trip with cancer survivors, they all understood my hysterics.  Due to the high-dose radiation, this time my scalp looked red and severely burned (“angry” as one person perfectly described it).  It looked worse than before, but by the time it was all said and done, I wiped the dust off the hairpiece and adjusted to it all.  I also continued to rock what I like to call “the crazy bun.”  It was disappointing, sure, but manageable.

But now…since ya know, my scalp is significantly made up of my stomach, the hair will never ever grow back and it’s definitely not just a bald spot either.  (As a darkly humourous aside, my scalp now has freckles that were formerly members of my abs).  Sure, they say the swelling will go down too.  However, it’s really hard to imagine my head ever looking semi-normal or symmetrical.  There are sutures everywhere and because the plastic’s team had to connect artieries behind my ear, there is yet another incision there.

I’ve been dealing with the whole bald spot/scalp/hair issue for 2 years now.  I get it.  I had brain cancer.  I can’t expect that my head would look compleletly untouched.  However, I was not prepared for the additional disaster area of my chest/abdomen.  Again, I had brain cancer.  This wasn’t supposed to involve abdominal surgery with permanent scarring down the front of my body.  That wasn’t in the manual!

My stomach is also so swollen that I look about 10-months pregnant.  I am a very petite person.  It’s not a cute look.  In being such an intensly active person, my core was always so strong.  Now, I can’t stand up straight because of the sutures and the swelling.  I hobble around like an 80-year-old woman.

I hate that my poor husband has to look at me this way.  He is beyond amazing and justifyably tells me I’m being crazy.  He is not afraid to look at me, but I am.

I feel petty even complaining about these things.  Big picture – I’m alive!  So, so many brain cancer patients are not as fortunate.  Also, I’m sitting in my own home, on my couch, next to my incredible husband and my adorable pup.  I am not in the hospital.  I am not in a rehab facility trying to fight serious neurologic side effects.

I still do have everything.  I just wish I had never walked into that bar with Freddy a few weeks ago.  I should’ve just stayed the hell home.

 

 

 

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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