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.

I Did It! I Made It Onto a Podcast!

THE NEWS

First – the big news.

I did it!  I made it onto a podcast!  For anyone who would like to listen (I would LOVE anyone to listen) the link is here:

http://croydonradio.com/podcast/show.php?HistoryID=215b2eb5-886d-fde2-1a8a-773bce29f2ba

My segment begins just around 14 minutes in.

HOW I MADE IT ONTO MY FIRST PODCAST

It took so much for me to sit down and create this blog.  I was so self-conscious and intimidated by the idea of opening myself up like this.  Still to this day, a few months since I began the blog, very few of my friends and family know about it.

I’ve spoken publicly many times about my story and this “cancer chaos.”  However, there is just something that feels so different about putting it all out there on the worldwide web, for absolutely anyone to read, anyone to find.

I recently listened to a video by Gabby Bernstein (if you don’t know her, you need to!  http://gabbybernstein.com/.  One of her particular messages is that it is our responsibility to share our own empowering message – to share your story.  Along with that, she also teaches not to compare ourselves in telling that story – there are more people in need than those who are serving that need.  In other words, even if there are 300 people out there with a similar story, there’s so many more people in need of hearing those stories.  Plus, your story is your own!  It is different from every single one of those 300 other people’s stories.

So, with that motivation, I decided to put myself out there just a little bit more, beyond this blog.

Through Twitter, which I also joined at the same time as I began this blog, I found an incredible woman, Claire Bullimore.  Claire is a fellow brain tumor survivor.  She is the founder of Aunty M Brain Tumours, a radio presenter on Croydon Radio (online) and the host of a show dedicated to people affected by brain tumours, called the Aunty M Brain Tumours Talk show.  As Claire says on her website, her show is there “to give a voice to brain tumour sufferers, survivors, family or friends.”  AND, this was key – her website said that she interviews “anyone who wants to have a voice or tell their story.”

So, fate/the cosmos/what have you was clearly sending me a message.  Tell Your Story!!

All it took was a simple email to Claire and just a few days later, we were setting up an interview for her podcast.  It was such an amazing experience and I hope that anyone reading here will listen to my podcast, and all of Claire’s past and future podcasts.

Thank you, Claire!  You will always be my first podcast!

Claire’s website is: http://www.auntymbraintumours.co.uk/ and specifically, information about her talk show is here: http://www.auntymbraintumours.co.uk/aunty-m-brain-tumours-talk-show/

Her Twitter handle is:

Her blog can also be found at https://braintumoursupportauntym.wordpress.com/

Oh and did I mention, she’s an author too!  “A Brain Tumour’s Travel Tale” by Claire Bullimore.

In the Clear! And, the “New Normal”

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In my prior post “Vacation Period?” Seriously…, I described the traumatic period between my last radiation treatment and my follow-up MRI.  Well, the day of reckoning had come – the MRI results were in.  ALL CLEAR!  No sign of cancer!

Without a doubt, I was indescribably relieved.  I cried tears of overwhelming joy.  That metaphorical tons of bricks weighing on my shoulders immediately lifted.  It was almost surreal.

Once my oncologist sat down with me celebrating the incredible news, we got to another topic… the emotional turmoil of those weeks leading up the MRI.  She knew full-well what I had been going through, thanks to multiple calls to her office.  Even with the clear MRI, she knew I needed help to process all of this.  So, she recommended several things, including seeing a therapist, as well as a psychiatrist for an evaluation to determine if I
needed medication to ease the anxiety that had overcome me during that period of time.

I had never been in therapy.  I was of the strong opinion that here in the U.S., we were over-medicating ourselves with antidepressants and drugs of all sorts.  I’ll be honest – I was against it all.  However, she felt that it was almost a “prescription” to seek out professional help within the hospital’s incredible counseling center.  So, because I literally trusted her and all of my doctors with my life, with much hesitation, I agreed.

Additionally, she suggested reaching out to the hospital’s social worker, who specifically dealt with neurology patients and particularly brain cancer patients.  I had an easier time agreeing to that idea.  It seemed a lot less clinical.  As it turns out, the social worker pointed me to some really great cancer organizations, particularly First Descents (http://firstdescents.org/).

During the dark period, it also hadn’t helped that I had been on a seizure medication known to have terrible side effects regarding anxiety/depression in some patients.  So, with the clear MRI, my seizure doctor was comfortable taking me off that medication and replacing it with another drug.  Changing that medication made a world of difference for my mental state.

Going back to the time period between my surgery and throughout my radiation period (approximately 6 months after my inital diagosis), I had actually been extremely positive and strong.  I had become heavily involved in the National Brain Tumor Society (www.braintumor.org).  I had also just signed-up for a post-treatment support group through CancerCare (http://www.cancercare.org/).  So, I will say I was fortunate that the dark period only truly lasted those several weeks before the MRI.  Now, with the news the MRI was clear, boy, did my whole outlook change!  I went back, almost immediately, to that fighter/survivor, who people had truly been amazed by.  People had called me an “inspiration” (discussed in my post https://braincancerbabe.com/2016/04/19/being-an-inspiration/) and yeah, I felt that way again.

So, life began to quickly normalize again.  I felt happy.  I felt strong.  I felt positive.  I truly felt that everything was going to be okay.  Of course, the fear of a recurrence remained in the back of my mind, but it didn’t dominate my thoughts.  I was meeting so many other survivors and realizing, “Hey.  I’m not alone in all of this.  Other people actually felt the same way I did!  This was NOT a death sentence”  I went back to work, part-time.  Although, I still hated my job and actually regret going back so soon.  I did see the therapist and set up a regular schedule of appointments.  The psychiatrist, thankfully, deemed that I did not need antidepressants.  Life felt good again.  It felt really, really good.

While yes, life did normalize, it was indeed my “new normal.”  I felt comfortable with the fact that cancer had changed my whole world, but it wasn’t all for the worse.  I truly embraced a new perspective on life, namely, “Live every minute of every day like it’s your last!  Appreciate everything you have!”

I saw how lucky I was to have come out of all of this with very, very few side effects.  I was doing pretty much everything I had been doing before cancer entered my world.  I mean, seriously – I had had brain cancer and brain surgery!  Yet, here I was, pretty much the same girl I had been.  I truly recognized what an amazing support system I had.  The kindness, concern and love from even strangers overwhelmed me.  Man, was I loved!

I continued to be monitored very closely by my neurology team.  At every visit, they were beyond thrilled that the dark days were behind me (which I now see as a very brief period of time in the grand scheme of things).  They loved seeing that girl they had first met, who showed what a fighter she was and how she continued to embrace life so much.

I was kickin’ ass.

However, things did change in early 2015.  So, that will lead to my next post and specifically, Round 2 of the cancer chaos.

 

 

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.

“Everything Happens for a Reason” and the Judgment Zone

Throughout the last two years of living with the big “C” and delving into the big “C” world, I’ve met countless other survivors.  I’ve joined several support groups.  I’ve become heavily involved in various cancer charities.  Now, I’m blogging and finding other bloggers opening up about their big “C” lives.  Basically, from the moment of my diagnosis, I pushed myself right through the cancer club door, no questions asked.  I anointed myself a member of a club I never wanted to be a member of, and obviously, I never expected to be a member of.

Within this cancer club sphere, a topic that constantly comes up is the notion that “everything happens for a reason.”  I’ve seen that the reactions to this phrase run the full gamut –  we either embrace it unwaveringly, or it makes us want to punch people in the face.  (See below – this is a card I actually received from one of my favorite snarkiest friends)

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[DISCLAIMER: This is a “judgment free zone.”  I never judge any cancer survivor’s reactions, feelings, etc. to their situation.  Our cancer is our cancer and no two are the same.  While I may personally feel different from others, and I may embrace my experiences in certain ways, neither is right or wrong.]

So, for me, I do in fact believe that things happen for a reason.  After seriously contemplating life and death, and facing a potentially terminal disease, not to mention 3 complex brain surgeries, you can’t help but think, “What does all this mean?”

I was not always a very positive person throughout my life.  I was very cynical, even at a young age, and many times unhappy, really for no legitimate reason.  I frankly had a fantastic life.  Who knows where all that came from?  However, immediately after my diagnosis, everything changed.

I never got angry.  I never questioned, “Why me?”  Did I make jokes about how insane it was that a perfectly healthy person, who had never even been admitted into a hospital before, wound up with one of the most serious conditions you can get?  Hell yeah I did.  Some of the typical phrases I used were, “I can’t do anything simply.” or “Go big or go home.”  Every time I was asked about previous medical conditions, my standard reply was, “Nope.  Just brain cancer.”  My tumor is also so rare that my husband loves to say, “I always knew you were one in a million.”  (turns out I’m even more than one in a million, as approximately only 72 adults are diagnosed in the U.S. every year with my specific type and with all my factors.. yay me!)

I took on an unwavering positive attitude that I was going to beat this no matter what, and despite whether the end would come quickly or years and years from now, I would fight every single solitary day.  I would never ever give up.

[SECOND DISCLAIMER:  Another “hot topic” is the use of battle/war phrases to describe our cancer experiences.  There is a school of thought out there that by using those terms “fight” and “giving up” it implies that those we’ve lost didn’t fight enough, or did give up.  In no way do I believe that!!!]

So, I decided that Yes, this did happen for a reason.  I came to grips with the fact that I very likely would never know that reason.  I believe in God, and I do believe that throughout my life, every stage and every step has led to the here and now.  While I am here, continuing to breathe, continuing to get up out of bed every day and face this, there is a reason.  I mean, if there isn’t, then that REALLY sucks! All of this for nothin’????

So, while I harbor no ill will or judge those who feel differently, I don’t always feel that sentiment returned.  I have actually had relatively confrontational exchanges with survivors who do not in any way see that there is a reason for this.  In a circular-type argument though, those survivors tell me they have felt judged because they don’t embrace the notion “it happened for a reason.”  Yet, in the same breath, they roll their eyes and make slightly nasty comments towards people like me who actually do feel there’s a reason.  Hence, they’re sitting there complaining about being judged, as they’re looking me in the face judging me.

Again, I feel the way I feel.  It’s my coping mechanism.  So, along with that, I tend to distance myself from those who I feel judge my way of thinking/coping.  I understand how they feel.  Cancer is awful.  It’s bullshit.  It can kill us!!!  However, if I’m going to walk along this Earth, for however long that may be, I’m going to continue embracing every moment and believe that Yes, there is a reason.

God gives us only what we can handle.  Apparently, God thinks I’m a bad ass!

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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