Doing It All Over Again – The Second Surgery Pre-Op

In my prior post, https://braincancerbabe.com/2016/06/29/the-confirmed-recurrence-and-yet-another-brain-surgery  I explained that on June 30, 2015, I underwent my second brain surgery.

There isn’t much I’d detail about the day of that second surgery.  It was pretty much the same routine over again.  There were several ridiculous moments in the pre-op process though.  Just to add some levity to a seriously scary situation, I’ll explain.

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My surgery was delayed for quite a while (at least an hour or more) because the nursing staff found that my results of the routine pregnancy test, given to any female patient under a certain age, was “inconclusive.”  The chaos this caused around the staff was almost unbelievable – laughable even, if it hadn’t been me.  The staff even went so far as to call down a “specialist” to review the results.  Mind you, they never spoke to me directly – I overheard it all through my very bare curtain while sitting in my pre-op bed.  Of course, I knew full-well I was not pregnant.  Did I really need this on top of waiting for my second brain surgery???

My neurosurgeon finally came in with a smile on his face.  “So, you’re not pregnant!”  He clearly realized the ridiculousness too.  He always does though.  That’s why I love him so much.

Another thing I will never forget is the first nurse they assigned to prepare me for surgery.  I can say with absolute sincerity, I have never encountered what I’d consider a “bad nurse” in my hospital… with the exception of this one.  Let’s call her Jane (I don’t even know her real name anyway).

Jane was relatively young.  She was probably in her late 20s.  She never smiled.  She was completely monotone when she spoke.  Basically, she seemed like this was the last place she wanted to be.  Ya know, mind you, she was dealing with patients going into brain surgery!  Suck it up, honey!  If you’re having a “bad day” mine is probably a little worse.  So, needless to say, the pre-op station was probably the last place she should have been assigned.

On top of her miserable demeanor, it was her duty to give me my IV.  I mentioned casually as she was prepping the IV that I had great veins and no one had ever missed a vein.  Murphy’s Law, of course.  What would you know?  She was so mindless that of course, she missed my vein.  Apart from failing to get my vein, it actually hurt a lot.  I immediately began to cry, hard.  Rather than apologize, she took out the needle, rolled her eyes and sighed in annoyance.  Then, she stalked out of the area.

As if in a movie, kinda like Wonder Woman, another nurse (Let’s call her Mary) pulled back the curtain, swooped in and took charge!  While Jane attempted to come back in, Mary abruptly turned to her and said in no uncertain terms, “I’ve got this!”  I never saw Jane again, thankfully.

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From then on, Mary stayed with me, even wheeling me into the operating room.  We talked about imagining my favorite place, the beach, and sipping cocktails all day in the sun.  She helped soothe me and calm me down.  I laughed and smiled the whole time she was with me.  Thank God for Mary.

So, with Mary by my side, there I was, in the operating room.  I was surrounded by surgical staff frantically running all around.  Once again, I was looking up at the enormous operating room lights.  I could hear the loud hum of the MRI machine.  I was just about to undergo my second brain surgery, just doing it all over again.

The Confirmed Recurrence and Yet, Another Brain Surgery

In my prior post (https://braincancerbabe.com/2016/06/22/the-dreaded-word-recurrence/ ) I wrote about my suspected recurrence.  Well, that was confirmed in June 2015.  I say “confirmed” recurrence, although whether the lesion was indeed “cancer” can only be truly confirmed with the pathology report following surgery and removal of the lesion… but you get what I’m saying.

It is strange that I do not remember much about when I was told I would have to undergo yet another brain surgery.  Everything about Round 1 continues to be so clear in my head: the initial diagnosis, the first surgery, treatment, etc..

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This time around, I again met with my neurosurgeon in preparation for the surgery.  He was comforting in saying that the lesion was very “superficial” and remained very distinct.  The only way I can describe it is that the lesion hadn’t spread out like tentacles into other surrounding areas.  It would be a more simple surgery to just go in and cut it right out.  Okay.  That sounded promising.

I also clearly remember the phone call when my neurosurgeon’s nurse gave me the date of the surgery.  It was less than a week from the time my oncologist had confirmed that the lesion was indeed growing, indicating the recurrence.  However, I don’t really recall the emotions I felt, or any of the preparation leading up to the second surgery.  Maybe I’ve blocked it out subconsciously, or it is just part of my memory I’ve lost due to the trauma to my brain.  Maybe it’s both.

Furthermore, I didn’t have much time to think about the second surgery.  It was scheduled so quickly, thankfully.  I just wanted it done and over with – move on!

I do recall sitting back on the days leading up to the surgery and thinking, “Is this really happening again?  Another surgery?  Wasn’t one brain surgery enough?”  However, my doctors were confident that since I had come out of the first surgery so well, and had basically returned to my normal life, I would come out of the second one just as well.  That was a pretty reassuring thought, honestly.

From what I remember (and again, maybe I’ve just blocked it all out), I handled the situation pretty well.  One theory that has stayed with me is that my worst fear had come true – the cancer had come back.  So, if I got through this okay, I would have conquered that immense mental and physical battle.

All of my family and friends were blown away.  They were so frightened, but all I kept saying was, “I’ll be okay.”  I meant it too.  I had so much confidence in my medical team.  I knew what to expect this time.  Funny enough, it was the minor things that I knew were coming while I would be admitted in the hospital that I dreaded.  I hated the idea of the daily shots in my stomach to prevent blood clots.  I would be undergoing brain surgery, yet that’s what bothered me about the future hospital stay!  I also despised the gauze bandage turban they had wrapped around my head after the first surgery to reduce the swelling.  The thought of that turban actually made me angry.  I don’t know – maybe it was mind’s way of protecting me from the truly frightening consequences.

So, June 30, 2015 came along and I was once again reporting for duty – “Good morning.  I’m having surgery today.”  Again.


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.

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.

 

 

“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.

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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.

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.