Daily Promt – “Keep Your Heart As Open As The Sky”

How difficult, sometimes terrifying, is it to open up your true self to another?  To put yourself out there in the most deeply raw way…

Will they truly understand you?

Will they judge you?

Will they flee or start to disconnect because they just simply cannot handle what you’ve exposed?

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Or, will they accept you in all of your beauty and flaws?

Will they see that power within you and the strength that shines through?

Will they admire your unwavering loyalty?

Will they see that your sensitivity is not a weakness, but a gift?

Will they recognize how deeply you can and will love with every inch of your heart?

Will they fully embrace all that makes you “you.”?

Be your true self.  Always open your heart, your mind, your soul.  You are beautiful, so let that beauty shine through.  Those that embrace every ounce of your being will stay with you forever, whether it be physically, emotionally, spiritually… Yet, if someone cannot accept that, they weren’t meant to remain in your life.  They were simply there, for that fleeting moment in time, to remind you to always “keep your heart as open as the sky.”

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https://dailypost.wordpress.com/prompts/open/

 

“Turn Your Wounds Into Wings” – Daily Prompt “Struggle”

How do you define “struggle”?  It means so much, to so many, in so many different ways.

My struggle is not yours, no matter how similar they may seem.  Yet, we can share in those struggles.  We can empathize in our fear, our hurt, our will to survive.  We can unite in our strength and our perseverance in the face of that fear and hurt.  We can find unbreakable bonds with those struggling along side us.  Most importantly, we can find our own inner power, a power we never thought possible or ever recognized.  We find strength.

So, take that struggle.  Face it.  Whatever that struggle  may be.  Conquer it.  “Turn Your Wounds Into Wings.”  (quote by Emily Joy Rosen)

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https://dailypost.wordpress.com/prompts/struggle/

 

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

Looking for a Liebster Nominee – Help!

HELP!

Recently, Kimberly at https://creeksideconfessions.wordpress.com/ nominated me for a Liebster Award.

This is also a link to the nomination, which details what the Award is and its rules for anyone who isn’t familiar.

https://creeksideconfessions.wordpress.com/2016/05/30/loving-my-liebster/

For anyone following my blog, whether a seasoned blogger or new to this game like me, I need to nominate some fellow bloggers.  The purpose of the Award is to acknowledge new bloggers with less than 100 followers.  (Hope I make it there one day!!!)

So… I need some help. 

  1.  I’ve commented on some blogs, which I’ve found really interesting, and have asked if they’d accept the nomination.  No biters yet.  Maybe I’m being too impatient???
  2. I’ve read through “First Friday” posts on WordPress’ Daily Post and have searched through a number of blogs.  Frankly, it’s kinda overwhelming and time consuming.  A lot of the blog names don’t really indicate what the blog is about (ex. mine is clearly about cancer), so I wade through a lot to find those that really speak to me.
  3. I’ve used “tags” to search out blogs on topics I’m interested in, but I really find blogs that have been around a long time.  I found one with over 10,000 followers!  Amazing, by the way.

****I’m just going to obnoxiously use caps to just draw attention to what I’m asking.  Please don’t think I’m yelling.***

ARE ANY NEW BLOGGERS FOLLOWING ME INTERESTED IN ACCEPTING THE AWARD?

DO ANY SEASONED BLOGGERS HAVE ANY SUGGESTIONS ON FINDING NEW BLOGS?

ALSO, DO YOU HAVE ANY BLOG RECOMMENDATIONS?  I’M REALLY LOOKING FOR BLOGS CENTERED UPON:

1.) CANCER OR CHALLENGING CONDITIONS US NEW BLOGGERS ARE FACING;

2.) MOTIVATIONAL BLOGS ABOUT INSPIRATION, STRENGTH, POSITIVITY;

3.)  TRAVEL BLOGS, PREFERABLY WORLD TRAVELERS

Any help would be soooo greatly appreciated!

Much thanks and love.

xoxoxo