And I’m Out! Back Home, But Boy Does Reality Bite

It’s pretty surreal being back home after my 7th brain surgery, a full week in ICU and then 2 1/2 weeks in acute, inpatient rehabilitation. It was strangely very bittersweet leaving rehab, where I had a very set schedule, was taken care of so wonderfully and most importantly, able to remove myself from reality. As the fantastic ‘90s movie says, “Reality Bites”.

Room With A View

View from my window at inpatient rehabilitation.

When I was initially told I’d be in acute rehab for more than 2 weeks, I had a pure and utter meltdown. I couldn’t imagine being cooped-up for that long without my husband, my dog, my own bed, any semblance of privacy, and on and on. Ugly tears everywhere! So many, many ugly tears

Yet, now that I’m out and back home, I feel completely overwhelmed. Piles of mail sat on my desk. Things weren’t in their “proper place”. (I’m no neat-freak but I’m very Type A when it comes to where things are placed, kept, etc. I don’t know, blame my parents… 🤔🤷🏻‍♀️) I had to make countless follow-up appointments. I had to call the apartment management because yet again, some dirtbag threw their cigarette butt onto our terrace. My darling husband fell for one of the easiest scams ever, and the laptop only I use got hacked. I not-so kindly asked him if I could introduce him to a Nigerian Prince.

Then came the real kicker! I received a letter from a debt collection law firm (the lowest of the low on the attorney food chain) threatening to file suit against ME because the home healthcare agency I was forced to use back in 2018 never paid the company THEY contracted with to give me home PT & OT. ***If you are reading this and are a debt collection attorney, I make no apologies. As an attorney myself, I’d rather chase ambulances***

Well, that of course set up a whole chain of phone calls to my insurance, my family attorney and the law firm threatening suit. Then, I proceeded to look back on all my prior correspondence with the home healthcare agency and the company seeking to sue me because they hadn’t been paid. Finally, I wrote a lengthy email to all parties, copying my attorney, having to “make my case” in writing how I was in no way responsible for this money, threatening to sue the firm for harassment, and underscoring that the Court wouldn’t look too favorably upon some firm trying to make a recovering cancer survivor pay almost $5,000 because their client signed a contract with a less-than reputable home healthcare agency.

So, yeah, reality really f***in’ bites! While I imagined coming home would be so joyous and relaxing, it’s been anything but relaxing. Who leaves the hospital after nearly one month and actually wants to go back???

For anyone who has never seen this movie, you’re missing out!
The good old grungy 1990’s

I know things will settle down, and I’m being a bit dramatic. My fellow patients I met during my stay, who will remain hospitalized for some time would probably kick me for wishing I was back there. However, there’s something very distressing about returning home, no longer just one “call bell” away from help. I was so fortunate to have been in such a top-notch facility. There was always someone to talk to, who understood everything I was going through. Whether it was a social worker, a therapist, a nurse or fellow patient-someone was constantly there to support me. They were right there in the trenches with me, and there wasn’t ANYTHING those nurses, aides, or doctors hadn’t seen or heard before. It was a total judgment free zone.

So, now I’m out. I’m back to the real world. Maybe I just need to chill out on my couch with some friends, puff a lil of my medicinal med not permitted in the hospital, go grab snacks at a gas station and start dancing to some cheesy music. (If you’ve seen the movie, you’ll get the reference)

“Lucky Number 7”, or At Least I Hope So

As I write this, I’m laying here in ICU…Still. Thankfully, it’s not an isolated ICU, so friends and family can come and go. Most importantly my husband is allowed to be here everyday, so the days go by much quicker than the evenings. My “estimated” hospital stay of 1-2 days following surgery No. 7 is currently on Day 7 with a “possible discharge to acute rehab tomorrow”. However, I’ve been hearing this for quite a few days now. Unfortunately with my case, this is no surprise.

It’s a natural question to ask, “How long will you be in the hospital?” However, I have learned the hard way to take that “estimated” time period with a complete grain of salt. It’s NEVER what they estimate!

Something always seems to happen; be it a simple revision of my skin graft (Surgery No. 4) when they unexpectedly found 3 separate bacteria in my skull bone, and what was only meant to be a one-night stay turned into a full week vs. when I was released the same night after they removed a small part of my skull that was totally unconnected to the rest of my skull and excised a wound on my scalp (Surgery No. 5).

So, here I am, alive but not so well, after Surgery No. 7.

Yes. I thank God I’m alive, and that I’m coherent enough to even say that. I recall most details of my other surgeries. However, all I can recall from the first few days after this surgery was the horrific, excruciating pain. Mostly I was in and out of a painkiller haze. Yet, when I was actually awake, the slightest movement caused intense, shooting pains throughout my entire body. Now, this chick has got a serious threshold for pain! So, when they asked, “On a scale of 1 to 10, how would you rate the pain?” and I could merely moan, “10” – you’ve got to understand just how severe this pain was.

Without getting into all the complexities of this 7th Surgery, I had a “shunt” or catheter placed into the area of my brain, where the tumors were removed and the radiation was beamed into where fluid would consistently flow. The fluid would sometimes cause increased swelling and thus, pressure in my brain. Now, with the shunt in place, the fluid will hopefully continuously flow out of the brain and be absorbed into the rest of my body. Science! It’s fascinating when you’re not the guinea pig.

I’ll have this shunt inside my body for as long as it holds up. It could be years, months. Again, who knows?

What I do know is that this has been one of the toughest, if not THE toughest surgeries so far. So, I hope and I pray that this will be Lucky Number 7 and I won’t have to see another Operating Room for a very, very long time.

Allelujia! I’m Outta Here! But…

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After my initial surgery in 2014, I was released on Easter Sunday.  I was raised Catholic, but I wouldn’t say I am a practicing one, which I won’t go into the details or reasons behind.  Regardless, Easter does have a beautiful meaning.  It is symbolic of rising up, celebrating new life and for those who believe, it is a day of miracles.

I found symbolism in being released that day.  I was celebrating my new life as a cancer survivor.  I was someone who had just overcome overwhelming, dangerous, potentially life-altering (possibly terminal, but we won’t go there) brain surgery.  I was walking out of that hospital to return to my own home, my own bed, a hot shower and all in all, a return to a semi-normal life.  My surgery had been a success in all ways possible.  I felt it was a miracle.  Someone up there in the heavens had watched over me.  I have no doubt about that.

However, a strange phenomena that comes with the release from the hospital is a feeling of fear and unease.  For days, you had that “Call Button” right next to you.  If you needed anything, a nurse was right there to assist you.  If the nurse couldn’t ease your fears or your concerns, well there was a team of doctors who could help as well.  You were constantly monitored.  It was safe.

However, after the discharge from the hospital, that all changed.  You were essentially on your own to monitor everything you felt, experienced, etc. (of course, that would be different for those who required home services).  Was that feeling in my leg the beginning of another seizure?  Was the pain in my head just a normal side effect of the surgery, or was it something more?  What if I fell?  There was no physical therapist at my beckon call.

Then, there was the feeling of helplessness.  I had to have someone with me at all times for weeks.  It required my husband and family to all coordinate their busy schedules.  My husband didn’t want to rely on someone else, but life happens – he had to work.  I had always been a fiercely independent person.  This was all so new and so overwhelming.  However, I was fortunate to have all the support I needed.

At that point, I also had never met a fellow cancer survivor.  I couldn’t turn to someone and ask, “Is what I’m feeling normal?”  “Will this fear ever resolve, or will I be spending the rest of my life fearing things like another seizure, or worse even, this tumor coming back?”  Sure, I talked to my nurses and doctors about all of this.  They of course were kind and understanding, but I needed someone who had literally gone through this personally.

So, I began researching organizations dedicated to brain cancer and thankfully found the National Brain Tumor Society (braintumor.org).  Once I learned about their fierce advocacy, research and support systems, I looked no further.  I immediately started fundraising.  I was less than a month out of surgery and I contacted everyone I knew asking for donations.  By the next month, I was the highest individual fundraiser for their upcoming local event.  I truly believe that my incredible dedication to this organization saved me from some very dark, very detrimental thoughts.  I just dove in!  There simply wasn’t any time to focus on negativity and fear.

I cannot lie.  There were some dark moments.  I am fortunate enough to say though, they did not come often and they did not consume me.  My dedication to the National Brain Tumor Society (braintumor.org) consumed me instead.  So much of my strength and positivity  came through my work to advocate and fundraise.  It was my therapy.

Of course, my treatment did not end with the release from the hospital.  It would be weeks before we came up with a plan and that is a whole nother story for a whole new post.

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.    

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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