anaplastic ependymoma

The Confirmed Recurrence and Yet, Another Brain Surgery

~ Brain Cancer Babe ~ 7 Comments

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

~ Brain Cancer Babe ~ 3 Comments

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”

~ Brain Cancer Babe ~ 2 Comments

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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????

~ Brain Cancer Babe ~ Leave a comment

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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!

 

Allelujia! I’m Outta Here! But…

~ Brain Cancer Babe ~ Leave a comment

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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

~ Brain Cancer Babe ~ 4 Comments

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

~ Brain Cancer Babe ~ 4 Comments

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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