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.


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.

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!

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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