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.

 

 

So, you’re going to radiate my brain????

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Following my initial brain surgery in April 2014, it took time to come up with the further “treatment plan.”  Given that I am so fortunate (insert sarcasm here), my tumor, an anaplastic ependymoma, is extremely rare.

All of my factors also played into how rare it was:

1.)  It was a primary tumor in my brain –  typically, my type appeared in the spinal cord and remained there,  or it would metastasize to the brain; there was absolutely no trace of cancer in my spine (confirmed through spinal taps – oh my god, the pain!)

2.)  My tumor is considered a childhood/pediatric cancer, so it is rare to find it in adults (some statistics show that only approximately 70 adults in the U.S. are diagnosed with a malignant, primary brain ependymoma every year.)

3.)  There are extremely limited studies regarding ependymomas, given how rare they are.  Thus, treatment options are basically – surgery, and/or radiation and/or maybe chemo.  Yet, the few studies showed that combining radiation and chemo didn’t make much difference, if any.  Thus, radiation was the standard protocol following surgery

4.)  My surgery resulted in a total resection of the tumor.  Thus, I was “technically” cancer-free, for whatever that was worth…

[DISCLAIMER:  This information is NOT meant to be taken as medical advice or gospel.  https://cern-foundation.org/ is the primary source for information on ependymomas)

So, following my surgery, I met my amazing “team” of doctors.  They are a god-send and I am literally thankful every single day for them.  My “team” consisted of my neurosurgeon, neuro-oncologist, seizure neurologist and radiation oncologist.  This didn’t even include the numerous doctors, who served on my hospital’s tumor board and studied my case alongside my primary doctors.

Together, my team came up with the plan – I would undergo 6 weeks of radiation (30 sessions 5 days a week) and no chemo.  I didn’t really think twice about it.  What other choice did I have?  I trusted all of these doctors.  I was being treated at one of the top cancer hospitals in the country.  Plus, there was really no other studies/information to show any alternative treatment.

Of course though, the idea of actually radiating my brain sounded insane!  Um, weren’t we all taught throughout our lives that radiation was a really, really bad thing?  Ex. “Don’t stand in front of the microwave!  Radiation!”  However, I don’t recall even asking that many questions.  I knew the really basic, possible side effects – swelling on my brain, fatigue, hair loss, etc.  So, I just kind of casually decided, “Okay, let’s do it.”

One of the most disturbing experiences regarding the radiation was the mask.  For those who don’t know, in order to radiate the brain, a patient needs to undergo a simulation.  Amongst other things, that involves forming a mesh mask to be placed on your face and around your head.  The mask would then be strapped down to the radiation table during your treatment.  It is so sci-fi I cannot even describe.  It is scary.  It is beyond uncomfortable.  It creates such pressure around your entire face and head.  Sometimes, it felt like I couldn’t breath properly or swallow.  I hated it.

I know some patients actually keep their masks.  I literally never looked at my mask.  I refused.  So, obviously I did not keep mine.

And so, I spent the first 6 weeks of my summer traveling 5 days a week to have my brain radiated.  The treatment itself never hurt.  It actually became very routine.  It was just a part of my day.

One of the most difficult parts came when I began to lose my hair from the radiation.  I never ever thought it would affect me so much.  Sitting on my couch, running my hands through my hair and holding clumps of it was overwhelming.  I cried – a lot.  I needed to get a hair piece, but I hadn’t actually lost enough to need a full wig.  When I sat down at the hair piece consult, I absolutely lost it.  I could not stop crying.  I guess it was one of the first physical signs that demonstrated, “Yes, you are actually a cancer patient.”  Frankly, I just didn’t look sick, or what we imagine a cancer patient is supposed to look like.  Yet this – this was an unquestionable physical sign that radiation was indeed entering my brain and causing side effects.  I was indeed a cancer patient.

Another side effect I wasn’t totally prepared for, despite being told over and over about it, was the fatigue.  It didn’t hit me as hard as I know it does some patients.  I literally went to my radiation sessions every day by myself on the bus and subway, which people were surprised by.  I made sure I walked every day.  I attended my PT sessions two to three times a week.  However, it took every ounce of my strength, both mentally and physically, to fight that fatigue.  Trust me, it isn’t just being tired.  It is a full body exhaustion.  However, as I was told over and over again, the best way to fight the fatigue was to basically, just fight through it.  So, I did.

I also spent a lot of time with friends and family enjoying summer as best I could.  I took a LOT of advantage of a friend’s pool.  I lounged on the beach as much as possible.  I laid out in the sun and read a lot.  I made sure I kept up my social life, although I obviously wasn’t frequenting the bars until 1:00 a.m.  I mean, for the first time in my life since my teens, I wasn’t working.  I was sure as hell going to take advantage of that!!!

So, after those 30 radiation sessions ended, my doctors advised that I would undergo my next scan in approximately a month to 6 weeks later.  I am still bitter and angry about this, but they called this my “vacation period.”  I wasn’t in treatment, so this was the time to rest and take advantage of my “vacation” from radiation.  It’s insulting to call it that.

My next post on the topic of Round 1 of my cancer life will go into the details of this “vacation period.”  Needless to say, it was NO vacation!

 

The First Signs…I Totally Ignored

I can’t specifically pinpoint when the strange sensations in my left leg began, but I recall a distinct moment in late January when I felt something was off.  To celebrate my 34th birthday, I planned a great getaway with some of my best girlfriends and my poor husband (the only male surrounded by 5 women is never easy).  We spent days on the beach in the Caribbean, sipping beers and frozen drinks.  We went dancing every night, so much that all of us came back with sore feet.  We ate fantastic food.  It was one of the best trips, filled with so much fun, joy and love.

One of those days, a few of us began walking the beach, hilariously to the end where the nudist resort began – just for shits and giggles.  However, less than halfway through the walk I had to stop due to that sensation in my left foot and leg.  I causally commented that it had been happening for a little while, but frankly I didn’t take it seriously whatsoever.

 As the early months of 2014 continued, the episodes came more often and they grew more intense.  I remember walking down the streets of Manhattan and having to stop until the feeling subsided.  My left foot would essentially become numb with the electrical-type sensations traveling all the way up my leg.  I recall sitting at my desk while they started to come multiple times a day.  It no longer mattered whether I was walking, sitting or laying down.

I know there were a few episodes, but one particular time while working out on an ellipitical machine the sensation wasn’t just isolated to my leg.  This time, it traveled all the way up my left side into my face.  I honestly thought I had just been working out too hard, but this episode did scare me.

So, by Thursday, April 3rd, I finally saw my primary care physician.  Due to a history of multiple sclerosis in my family, my doctor was concerned.  She wanted a brain MRI and blood tests.  I was devastated by the thought of an MS diagnosis.  I had seen what it did to my aunt over all these years.  I just couldn’t imagine it.

I went to my parent’s house immediately.  I was crying when I first saw my father and explained what my doctor had advised.  He was floored, but directed me to keep it from my mother.  Obviously, she had also seen what MS had done to her sister and our family.  My father did not want her to know anything until something, whatever that something was, could be confirmed.  I won’t lie.  That was TOUGH.

On Saturday, April 5th, I went in for the blood tests, but didn’t receive any results.  Those would take days.  The MRI had yet to be scheduled – insurance holdups of course.  Needless to say, it was not the best weekend.

And so, Sunday, April 6th, in an attempt to relieve all of the stress, I went to relax and get my nails done.  My world would never be the same.

The history of my seizure that day is detailed in my post.

https://braincancerbabe.com/2016/05/17/having-a-seizure/

Following my diagnosis, I learned that the episodes had been seizures and clearly, there was no question about the “big daddy” grandmal seizure.  However, there had never been any other symptoms I could pinpoint to have led me to even fathom cancer.  I never had headaches, blurred vision or issues with my speech.

No one prepares for brain cancer.  I can’t imagine anyone even suspects it despite clear symptoms.  I never really even knew about brain cancer.  No one ever really talked about it.  No one publicized the symptoms or what to look out for.  (As an aside, these are the reasons I tirelessly work to raise funds and awareness for brain cancer).

I wish I had known the symptoms and more knowledge of this disease.  Quite possibly, it could have pushed me into that doctor’s office much earlier.

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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.    

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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