In the Clear! And, the “New Normal”

happiness2

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.

 

 

“Vacation Period?” Seriously…

In my last post, So, you’re going to radiate my brain????, I talked about my 6 weeks of radiation.  As I described, radiation had become part of my regular, daily routine, as odd as that may sound.  Following the end of my 30 radiation sessions, my doctors dubbed the time until my next scan my “vacation period.”  Seriously?

There’s power in the words you choose, especially when it comes to cancer.  To call that time “vacation” is just simply wrong.  That term should never, ever be used.  So obviously, the period between the end of radiation until my next scan was by no stretch of the imagination, a “vacation.”

First, I lost that daily routine.  I was left all on my own to  find something else to do, day in and day out, to occupy my time.  From leaving my home to arriving back after radiation, I was out of the apartment for hours.  I wasn’t sitting around, pondering my own thoughts.  If there’s one thing that keeps you out of your head, it’s following a routine!

With the lack of that routine, things became VERY dark.  Frankly, this was the first time I truly felt the weight of what I had just gone through.  The “fight or flight” mentality had weakened.  I found myself sitting on my couch, hysterically crying, asking, “What the hell just happened to me?”  It never got to the point of, “Why me?” although that’s a perfectly understandable, common response.  However, it was the first time I truly thought about death.

My husband, my family, my friends – they had careers.  They worked all day.  I didn’t have any fellow cancer patients to turn to.  I felt completely and utterly alone, left with my own frightening thoughts.  Again, to call this a “vacation” makes me sick.

It’s a strange phenomena to me that the end of treatment was worse than undergoing the treatment itself.  I’ve heard both sides of this – some patients see treatment as horrific and ending treatment a true relief.  However, I’ve also met many survivors who felt just like me.  Again, each and every person is different, just as each and every cancer is different.  There is absolutely no judgment in either experience or opinion.

vacation-keep-calm

Another frightening aspect of this “vacation” was the lack of contact with medical staff.  Sure, my doctors were a phone call away.  Yet, going back and forth to the hospital for 6  straight weeks meant there was always someone physically there to monitor me.  If I had an issue, or a question, it could be handled right there and then.

There was a specific incident I remember during that “vacation” when I came down with a simple, routine cold.  I convinced myself it was so much more.  I was sure the tumor was back and it was affecting my whole body.  I also feared that every little twitch in my left leg was an oncoming seizure.  My oncologist’s nurse had to practically talk me off the ledge.  Yet, she understood what was going on.  It wasn’t the first time a patient had called believing the most minor thing was the end of the world.

And so, I truly mentally, emotionally suffered those 6 weeks.  It also didn’t help that leading up to the next scan, my first bought of “scanxiety” hit.  For any cancer patient out there, I would safely bet, you’ve experienced this.  For anyone who isn’t familiar with the experience, it is basically an overwhelming fear/anxiety/stress leading up to the results of a scan.  Many compare the symptoms to post-traumatic stress disorder (PTSD).  Uh, I can relate and wholeheartedly agree.  (As an aside, with no medical training whatsoever, I believe that the entire cancer diagnosis and what trauma follows brings about PTSD).

My immediate post-op MRI had shown that the surgery was a success and there had been a total resection of the tumor.  Yet, there was always that chance that there were cancerous cells still there, lurking around that no one could see just yet.  So, this next MRI was the first since my surgery.

The thoughts that consumed me: Would the scan show the tumor had already grown back?  Had the radiation worked?  Was there serious swelling on my brain caused from the radiation?  Could there be any visible side effects from the radiation?   Although, I didn’t even really know if that was possible…  Was I going to have to undergo another surgery?  This time, would they decide I’d need to start chemo?  Worse off, would they tell me that none of the treatment had worked and we simply had no other options?

At that point, I didn’t know about scanxiety.  I had never met or talked to a fellow patient/survivor, especially one my age.  I thought I was alone in this feeling.  Was I going crazy?  In fact, although I’m sitting here writing about it, I actually have a difficult time putting into words just how consuming and terrifying these thoughts were.  It actually felt like I was carrying a ton of bricks on my shoulders.  And worse off, no one around me truly understood, although of course they were sympathetic and tried to understand.

So, the time finally came where I underwent that first post-radiation MRI.  I don’t believe at that point I had been introduced to the magic of anti-anxiety medication.  So, as far as I can remember, I went into that MRI cold… nothing in my system to ease the fear of: 1.) going into that MRI tube, again; and 2.) the pure, raw fear of what that MRI could possibly show.  P.S. I have never ever once opened my eyes while in the tube, despite the countless MRIs over the last 2 years.

Luckily, the way my appointment worked, and still works to this day, I met with my oncologist just hours after my MRI.  So, I would know the results that day and then.  And that is the topic of my next post.

The Night Before Surgery

nervous-woman-cartoon

The Night Before

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

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

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

 

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.

4398b5d6df4c613308792a316636b51e