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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The List – The Chronology of Cancer Chaos

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As I delve into the blogosphere and start to read other blogs, I’ve seen that many bloggers list their treatment history.  It was frankly something I had never thought of, but I really think its great!

So, as best as I can, here is “The List” – the chronology of my cancer chaos:

January – April 2014

Episodes of sensations in my left leg began – My left foot would essentially become numb with electrical-type sensations traveling all the way up my leg.  Several episodes, in which the sensations traveled all the way up my left side into my face (Later learned these were seizures).

Thursday, April 3rd – appointment with primary care physician – brain MRI and blood tests ordered

Saturday, April 5th – blood tests, but no results;  MRI yet to be scheduled – insurance holdups, of course.

Sunday, April 6th – “Big daddy” grandmal seizure

**Can’t recall the initial consult with my neurosurgeon, but it was around April 10th and later followed by a torturous 2-hour+ functional MRI (A particular scan, which required me to repeat words, move various parts of my body, etc.)**

April 17th – 20th

Initial craniotomy with complete resection of tumor with 3-day admission in the hospital.  Discharged April 20th; Diagnosis of Grade III anaplastic ependymoma

May 27 – July 7th – 30 doses of radiation

April 2014 – January 2015

Eight months of physical therapy for neurological deficits on my left side; Spinal tap (Awful!!!); All clear scans

During this time, life eventually seemed to normalize; Returned to work part-time in September 2014; Began to exercise 4-5 times a week and focused on a healthy diet; Became physically stronger than I had been before cancer

February 2015 – Brain MRI began to show “something” – suspected recurrence

February – June 2015

Follow-up MRIs continued to show the same image; Second spinal tap; By June, the image/lesion had grown and recurrence considered “confirmed” (needed official confirmation with pathology report) and second craniotomy scheduled

June 30th – July 3rd

Second craniotomy with complete resection of tumor with 3-day admission in the hospital.  Discharged July 3rd; Confirmed diagnosis of recurrence of Grade III anaplastic ependymoma

July – September – 5 Avastin infusions

August 4th – 10th – 5 high-dose radiation treatments

December 2nd – December 3rd

Seen by physician assistant for pain and redness at surgical/radiation site; Admitted overnight for potential infection; MRI and blood work showed no signs of infection

As an aside, I had a noon flight on December 3rd to Colorado – I told every person I encountered that I was making that flight!  I was discharged at 9:00 a.m., literally rushed out of the hospital and made it to the airport with time to spare, but with my hospital band still on!

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December 28th – December 30th

Reported to UCC for 5-day migraine; admitted for monitoring of symptoms and medication control; MRI and blood work showed no signs of any issue; Resident tried to push a spinal tap, which I outright refused and which my oncologist agreed was unnecessary (Always have to be your own advocate!)

January – March 2016

Mild sensations begin again in left leg; memory appears to be getting worse; referred to Occupational Therapy (OT) and formal cognitive revaluation

March 31, 2016 – Brain MRI shows “something” – undetermined if the image is radiation necrosis or a 2nd recurrence (apparently the image is more diffuse, as opposed to nodular like a tumor); put on steroids

April 2016 – Begin OT for cognitive issues

May 2nd – May 5th

Following pictures I sent to my oncologist and neurosurgeon of my surgical/radiation area, I was directed to report to UCC for immediate admission for a suspected infection and wound breakdown; Titanium plate was actually exposed

Surgery ordered; Infectious disease called in to evaluate; Plastic surgery called in to partner with neurosurgery team during surgery to clear out infection and create skin flap

MRI showed no change from March 31st scan

Steroid taper was completed, unknown to my neurosurgeon

Discharged May 5th to complete pre-surgical testing and for a night at home to “rest” before surgery scheduled for May 6th

May 5th (Happy Cinco de Mayo!!!) – “Big Mamma” seizure in the middle of the night and return to UCC  ** Believed that the failure to advise my surgeon of the steroid taper contributed to the seizure**

May 6th12-hour surgery to clear infection in the brain, remove titanium plate, excise portion of my abdomen to create a large skin flap to cover area of infection and all of the insane intricacies of finding, moving around and reconnecting blood vessels, arteries, etc. (These doctors are geniuses and I cannot even begin to understand all they did)

May 6th – May 13th

Hospital stay including post-op observation, neuro-observation and standard admission

Multiple, daily doppler ultrasound testing of skin flap to ensure active blood flow and function of the arteries (or, making sure this complex system of the flap, blood vessels, arteries, etc. were working and my body wasn’t rejecting it)

Mutliple, daily arguments over my medications (too annoying and tedious to list) and a complete lack of commincation from the “neuro team” (this nebulous group of residents/fellows/ghosts), who were making major decisions about my in-patient care with NO consult with my treating doctors)

PT and OT evaluations and sessions – out-patients sessions ordered

Discharged Friday, the 13th – Yes, that’s right

TO BE CONTINUED….

                                                                                                                                                                            

Throughout these past two years, my treatment and care have involved scans, medicine administration, etc., but also other practices over various courses of time.  These all include:

  • Regular follow-ups with oncologist and seizure neurologist
  • Regular follow-up MRIs varying from every 6 weeks, to every 3 months, to every 6 weeks again, and so on
  • Therapy with psychologist as well as consults with a psychiatrist for anti-anxiety medication maintenance
  • Couples therapy with psychologist and social worker (This was a God-send!)
  • Cognitive therapy evaluations for multiple issues, including memory loss, inability to focus and multitask, etc.
  • Massage and acupuncture sessions
  • Exercise and fitness to keep my body healthy, strong and to relieve stress
  • Meditation (or as best as I can do it)

I’m sure I’m missing some, but thankfully, I’ve got a LOT of time to update things here.

 

 

 

 

Having a Seizure

I could probably come up with a more witty, more descriptive title for this post, but the experience of having a seizure is too horrifying to encapsulate in just a word or two.

I’ve now suffered two seizures in my life, just about two years apart from one another.  I’ve had some intermittent “seizure-like episodes”, which frankly would be classified as  seizures, but for me they aren’t even in the same realm as the other two seizures.

The first was a grand mal/generalized tonic-clonic seizure – the dramatic type that people generally associate with the term “seizure.”  I remember it starting, but obviously, I had no idea what was happening.

I had been having some strange sensations on my left side, almost like a feeling of electrical pulses or currents creeping up from my foot into my leg.  On one or two occasions, that feeling traveled all the way up my left side into my face.  Of course, I later learned that these were in fact seizures.  However, I thought I was perfectly healthy, in tip-top shape.  I never imagined in my wildest dreams that these episodes were seizures, let alone the first signs of brain cancer.

As for the grand mal “big daddy” seizure, it began with that same creeping feeling beginning in my left foot.  It started traveling up my side and very suddenly, my chest became extremely tight.  There was almost this warming feeling/rush too.  It’s a sensation I find hard to describe, but it’s what they call the “aura” before the seizure.  Although I could technically still breathe, I began clutching my chest.  At the time, I was wearing a baseball cap and lifted it up thinking maybe that would help give me some air.  It was at that exact moment I demanded 911.

Just after that, I lost the ability to speak and all control of my left leg.  I actually recall thinking to myself, “Why is my leg jerking like this?  I’m not telling it to do this.”  Almost like an out-of-body experience, I was looking down at myself and seeing this happening, but having absolutely no idea what was happening.  While I don’t remember the specific chronology, around the same time my left arm and head began violently jerking.  It was then that I lost total consciousness.

Apparently while I was unconscious, but the seizure still continued, my contacts popped out of my eyes.  The portion that happened while I was awake was violent enough.  I still cannot fathom what it must have been like at its peak (I guess if that’s the right term to even use).

I was taken to the E.R. by ambulance.  Looking up at the ceiling and the florescent hospital lights flashing by while I was being wheeled into the E.R., I remember the EMTs asking me my name.  I didn’t know it.  They asked me if I could tell them where I was.  I couldn’t.  All I could utter was, “I don’t know” over and over again.  Even though I can only recall a very brief portion of that time, one thought that still haunts me to this day was the feeling that this was the end.  I was going to die.

After being seen in the E.R., I learned that there was a lesion on my brain, which had caused the seizure.  Obviously, after several more tests and ultimately brain surgery, it was confirmed that I had cancer.  The strange thing though is that the seizure scared me more than cancer and I believe it has left me with so much more PTSD.

Following the surgery, did I worry the tumor would recur?  Of course.  However, if that did happen, I believed it would be a progression that I could sort through/deal with/face over a period of time.  Yet, I would never know when a seizure could happen.  I had no control over where I would be, who I was with, what I was doing, etc.  There was nothing I could do to ever prepare myself.  Sure, I took several seizure medications, but there was always that chance.  Also, for quite a long time, I believed every little sensation was the beginning of another seizure.  I truly lived in fear.

As with most things in life, as time went by, things got better.  I didn’t worry every time I left the house about what could happen if a seizure came on.  I worked out without the fear of collapsing.  My doctors cleared me to drive, although I never traveled more than a few miles on my own.  I even began feeling comfortable on the subway again, which had constantly frightened me.  (Being enclosed in an underground subway car, filled with people who aren’t 100% likely to rush to your aide, without any easy access to medical attention, was the cause of many anxiety filled days).

Ironically, just a few weeks ago I thought back on that intense, overwhelming fear of a seizure and truly relished in the fact that I had almost entirely overcome it.  And then…

As I sit here today, I am not even two weeks out from the second major seizure of my life.  So much of the fear has once again reared its ugly head, and now there’s more.

I don’t know which of the two seizures were more frightening, but as of now, the second one is winning.  If the first was “big daddy” this one was “big momma” and we all know, momma is usually scarier than daddy.

Without fully detailing the chaos that surrounded the second seizure, I had been tapering off steroids in the weeks prior due to some vague blur on my last MRI.  (It’s believed that the taper contributed to my second seizure, as no one had thought to inform  my neurosurgeon of the taper and he would have never reduced the steroid had he known, but… anyway).  During that time, all of the radiation treatments had caused my cells to die, breaking down the skin around my surgical site, and causing a major infection.  It’s never fun to see your titanium plate exposed!  So, after days in the hospital, I was finally scheduled for surgery on a Friday.  In an effort to let me rest, sleep in my own bed and prepare for at least another week or two in the hospital, I was sent home Thursday.

I went to bed Thursday evening having to mentally and emotionally prepare for my third brain surgery.  As if that wasn’t enough… I woke up at some point in the middle of the night, violently sitting up.  There wasn’t a second thought in my mind.  This was a seizure.  I don’t even think my body and mind had time to experience the “aura.”  I just knew immediately what was happening.

As I sat up, I yelled at my husband to wake up, screaming, “I’m having a seizure.  Call 911.  Get my Ativan!”  The poor man was barely conscious and yet I was in desperate need of help.  The seizure didn’t begin too intensely even though I realized what was happening.  I was even able to continue yelling at my husband to follow my orders!

The twitching began in my left leg exactly as last time and started to creep up my left side into my left arm and hand.  However, the spasms weren’t bad enough yet because I was able to actually open my pill box and take some Ativan.  Almost immediately after that though, it became very ugly.

My entire left side began to violently twitch and jerk.  My left hand became clawed and my toes were curled under.  My speech became extremely strained until I lost it completely, as I began to literally snort and drool.  I was able to use my right hand to steady myself against the bed, at least keeping me safe from falling off.

I think one of the strangest sensations during the whole experience was that I remained completely conscious, knowing exactly what was happening and worse, what could happen.  My doctor had always told me that if I ever had another seizure, I would have to do my very best to stay calm.  I never thought that would ever be possible, but this time, I did say to myself that I needed to breathe and hope that this would pass.  Frankly, my attempt at staying calm utterly disappeared at the moment I could only communicate by snorting.

And just as it had started, the jerking and twitching began to slowly subside.  I could talk again, thankfully.  However, my entire left side was basically dead.  I sat there trying to move my left leg.  Nothing.  I tried lifting my left arm.  Nothing.  I picked up my arm with my right hand, but it just flopped onto the bed like a dead fish.  My fingers also remained clawed.  I was completely convinced I was paralyzed and a hundred scenarios rushed into my head, while I imagined all the things I’d never be able to do again.

Once the EMTs arrived, I was able to communicate fully, but the sensation on my left side had yet to return.  After a few minutes of oxygen, I began to feel what I thought was another aura, but thankfully, it was actually the sensations in my extremities coming back.  Slowly, I was able to move my leg and my arm, although they were clearly weak.  I was also able to move my fingers around and no longer felt like a clawed lobster woman.  Enough time had passed that it didn’t seem likely another seizure would come on.  So it was back to my hospital, hours early for my third brain surgery with the added bonus of a sudden seizure.

It’s now almost two weeks later and once again, my 12-hour surgery is not what keeps me up at night – it’s the fear of another seizure.  I hope and pray that the feelings that consumed me after the first seizure subside again after this experience.  Unfortunately, it’s going to take some serious therapy, meds and strength of mind to get back to where I was just weeks ago.

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Things can always be worse

 

I don’t expect this to be a long post, or even entirely sensical (I’m just a week out of surgery, so be kind).  My last post described my upcoming, essentially emergent surgery.  So, so much has happened in almost 2 weeks from then.

After several days in the hospital, waiting to determine when the surgery would be scheduled, we finally came to the conclusion that it would all go down Friday, May 6th.  As we suspected, the surgery would not be your “typical” brain surgery.  This surgery would now involve the plastic surgery team cutting down my abdomen and taking a significant amount of skin to create a flap over the previous surgical areas, which were now destroyed by the radiation and infection.  Although we hoped for a quicker surgery, realistically, it would be about 12-hours if all went well.

On the bright side of all of this, my neurosurgeon was confident that there would be absolutely no neurological side effects.  He described this procedure as a “plumbing job”to get rid of the infection, to prepare the flap and connect it properly so that it functioned/survived as living skin.  I don’t pretend to understand it all though…

Knowing my recovery time would be significant, me, my neurosurgery team, the plastic surgery team and the infectious disease team all agreed I could go home for just a night to relax and sleep in my own bed before an extended post-surgical stay. Little did we all know what a terrible idea that would be.

At home, I packed my bag for the hospital.  I took a LONG shower knowing it would be quite a while before I had a decent one again.  I did my best to straighten up the apartment into some kind of order.  I went to bed scared, but I was handling it.

At some point in the middle of the night, I shot up from a dead sleep.  My immediate thought, “I’m having a seizure.”  I knew it right away.  I could feel the strange, electrical sensations in my left leg, traveling up my side, into my left hand and then into my face.  I was able to at least wake up my husband and direct him to give me my medication and call 911.  Yet, he had never seen this happen.  He was honestly in shock and wasn’t truly able to process all of this.

Then came the intense, uncontrollable shaking and twitching, the complete and utter loss of power over my own body.  I heard my doctor’s voice telling me that despite it all, if a seizure ever came on, I’d have to do my best to stay calm.  So, while I had no control whatsoever of my body, my mind was functional enough to keep telling myself to stay calm, conscious and continuously breathing.  Unfortunately, I then lost all control to speak.  I was snorting and drooling.  I was convinced I was gone.

I frankly don’t remember it all settling down.  However, when it did, I had absolutely no use of my left side.  I was paralyzed.  I kept trying to send signals to my foot and hand, “Move, just move”, but nothing…My left hand was basically clawed and I couldn’t straighten any of my fingers.  My left side just felt dead.  Hundreds of things flooded my head.  Would I ever walk again?  Would I have to spend weeks in a physical rehab center?  What about my surgery?  What if this happened during surgery?

By now, the police and EMTs were in the mess of my bedroom.  I had regained the ability to speak and thankfully, the EMTs had good senses of humor.  I began apologizing about the state of our apartment, while they laughed and told me, “You ain’t seen nothing.”  They helped keep my calm, although my husband was still an absolute mess.

At some point, I started to regain movement and sensation in my left side.  So, now it was time to once again trek to the hospital I had only left hours ago.  All I kept thinking was that I should’ve never gone home.  I shouldn’t have been so selfish to have pushed to leave.  Here I was, beating myself up after a major, possibly life-altering seizure.

Now, I was being wheeled back into the UCC.  God knows what other catastrophe awaited.  As if it wasn’t enough that I was scheduled for major, complex, emergent brain/plastic surgery in just hours…now I had to face this seizure too.

I guess things can always be worse.

 

 

 

 

Pain Is Real, But So Is Hope

 

“Hope is being able to see that there is light despite all of the darkness.”

Desmond Tutu.

In the darkest moments since my diagnosis, at times it felt like all I had was hope. Perhaps I didn’t always identify it as “hope.” Sometimes, it was faith in God. Other times, it was just a pure, raw will to survive. It also manifested in my thoughts when I looked at my husband and knew I could not leave him. We had way too many years left to live together. Having hope was not always a conscious decision either. There was just simply no other way.

Hope can be defined as “a feeling of expectation and desire for a thing to happen.” It can also be defined as “a feeling of trust.” These simple definitions mean so much within the context of my diagnosis. I hoped that I would survive my surgery, that the surgery would successfully remove the tumor without completely damaging my brain, that the radiation would keep the cancer at bay, and that I would ultimately be one of the success stories. I also put my complete and total trust in my neurosurgeon, my oncologist, my radiation team, and the whole slew of medical professionals working to save my life. I didn’t just hope for these things though. I prayed. I begged God to protect me. I cried to my family that this retched disease would not kill me.

I never made a conscious decision to choose happiness and positivity when first learning my diagnosis. In fact, looking at the situation with such a hopeful attitude was actually contrary to how I typically viewed things in my life. I had always been such a cynical, negative person. Yet, without a second thought, I found myself determined beyond question that I would survive this.

 

There was also no choice, but to be strong and hopeful. One particular situation always comes to mind when thinking about these feelings. After my surgery, as soon as I was cleared to get out of bed, I took my IV stand and started walking laps around the unit. I never thought about it, I just did it. At first, I couldn’t do it on my own. After about a day, I built up my stamina to walk without any assistance. Sure, I was slow and unsteady, but I did it. I had also colored a picture of butterflies and hung it on the IV stand, so that whenever a nurse or another patient saw me, they smiled. On the last day, just before I was released, one of my neurosurgeon’s team members saw me walking the unit. She stopped me and said, “You’re going to be okay, Mrs. K. I know it.”

On the flipside, my roommate in the hospital did not seem to be very hopeful. Looking back, I wish I could have spoken to her and talked about what she was feeling. I was so focused on my survival that I didn’t stop to think about what she was going through. She refused to get out of bed, despite the nurses and doctors urging her every few hours to do so. Every instruction the medical staff gave her, she ignored. I overheard a phone conversation she had, in which she was explaining that she didn’t ask people for help and was frustrated that she needed help.   As I waited for the endless paperwork the day I was released from the hospital, I overheard my rommate’s doctors telling her that she would not be released for quite some time. I find myself thinking about her a lot, and I hope she eventually found her inner strength, her hope.

 

There are times when my strength falters. When something negative happens, I don’t always handle it well. At times, I feel irrationally upset by trivial issues and situations, which don’t deserve my time and valuable energy.  Yet, no matter how upset these minor issues can make me, I always come back to the most important things and what truly matters – that I am still here, living, breathing, thriving and surviving.  And so, I continue to live day-by-day, expecting and trusting that life will continue because really without that hope, what do I have?

“So, what next?”

find-more-time     As a teenager, I would long to be older, always wishing I could do all the things I was too young to do. I wanted to turn eighteen, leave high school behind, head to college and finally get away from the constant, watchful eyes of my parents. Then, after I turned eighteen, I couldn’t wait to turn twenty-one so I could finally walk into a bar and freely enjoy a beer. Once I was a senior in college, the focus became graduating and going onto law school. In my last year of law school, I constantly stressed over getting a job and beginning my career.

As I came closer to thirty, it was all about getting married. I worried if my then-boyfriend (now husband) would propose, and whether we would have enough time to have children before I was thirty-five. After deciding to continue our lives together, I worried whether we would have enough money in the coming years to buy a house, to support our family, and so on. Beyond that, I constantly questioned where I would be in my career in five, ten years from now?

These self-imposed timelines completely hindered my ability to live in the moment, to just sit back and enjoy all of the wonderful things in my life. I was always looking to that next milestone and worrying whether my life would fit into some neat little box of expectations I created for myself. It was like I was living my whole life waiting for the next month, year.. the next step.

 Since my diagnosis, everything has changed. At thirty-four years old, having literally come close to death, I now relish every minute of my life. I no longer worry about that next step. I just take things as they come.

Despite battling for my life and facing my own mortality as a young adult, it has truly been the best of times, and the worst of times.

 I have never been so frightened as when I was being wheeled into that operating room. I did not know if I would survive. Maybe even worse, I feared I would wake up a different person, or debilitated and unable to function as I had before. This disease had quite literally invaded my brain, the strongest part of my body, and taken it hostage.

After surviving brain surgery, I was hit with the news, “The tumor was malignant and a very rare, very aggressive type with a high rate of recurrence.”  How could this even be happening? What about all of those timelines for the future? Would I even make it to see thirty-five, forty?  And then I asked, “Okay.  So, what next?”

Then, a whole new set of timelines entered my life… the time period before radiation would begin; the amount of treatments and length of radiation; the time between my follow-up scans; the months between my oncology appointments; and most importantly, the time before I could say, “I’m in remission.” All of those previous, self-imposed milestones suddenly felt so trivial.

Yet, in facing the worst time of my life, I began to see the incredible beauty of my life. I recognized how strong I was mentally, emotionally, physically and spiritually. I also came to see how others had always recognized my strength, even if I hadn’t seen it. I heard so often, “If anyone can get through this, you can.” Also, while I was always very close with my family, I truly realized how much I was loved. I cannot put into words the feeling of hearing my mother say, “It should have been me. Why wasn’t it me and not you? I wish I could take your place and make your pain go away.” Even before cancer, my husband has been my best friend and “my partner in crime.” Now, having gone through all of this in less than two years of marriage, I can without a doubt say he is my soul mate. As for my friends, they have become like family. I truly never recognized how much they cared until this experience. In so many ways, I am so lucky.

I would not wish cancer on my worst enemy, but it has brought such a deeper meaning to my life. I hope and pray that the worst times are behind me now. Regardless, I have learned to appreciate the good times, the best of times, so much more. No matter what life throws my way going forward, I will continue to appreciate every moment. And for that, I am thankful.

“So, does that mean it’s cancer?”

“So, does that mean, it’s cancer?”  That was the question I found myself asking, during my first post-operative appointment with my neurosurgeon.  The only way to fully determine  whether a tumor is “benign” or cancerous is to undergo hours of complex surgery, involving your skull being sawed open and your brain being cut into to remove the evil intruder that has invaded your body.  (I use the word “benign” in quotes because personally, having to undergo brain surgery, whatever the ultimate diagnosis may be, doesn’t seem “benign” to me.)

As if it hadn’t been enough to have survived brain surgery, now I was faced with days of agonizing over the official diagnosis.  Did I actually have cancer?

I eventually learned the answer to that nagging question was indeed, “Yes.”

My particular tumor was an anaplastic ependymoma, an extremely rare and aggressive form of brain cancer, which was likely to recur.  They weren’t lying – it would soon recur.  That is a story for another day though.

It’s indescribable to truly explain the feeling when you’re first told you have cancer.  From what I can describe, I felt… numb. My heart felt like it had actually stopped beating. I am an incredibly sensitive person and typically can cry at the drop of a hat.  P.S. There hasn’t been a single Disney movie that didn’t bring me to tears.  Yet, when I heard the word “cancer”, I cried like I had never cried before. The tears came so slowly. It felt like time had paused and then reset in slow motion. I couldn’t breathe fully. I couldn’t look at my husband, who sat there next to me. Frankly, I couldn’t feel anything.  I just sat there with my head down, staring at the floor.

Quickly though, I held my head up, stopped crying and said, “Okay.  Well, what do we do now?”

I still don’t know exactly where that intense, sudden feeling of strength came from.  I didn’t feel scared or hopeless.  I felt determined that I was going to do everything in my power to fight this and come out on top.

As the weeks went by and we established a treatment plan, I felt hopeful. I would remain positive, recover from surgery, and just get through this. I wanted to get strong again and return to an active, healthy life. I was convinced that I would be able to just look back on those months after surgery and treatment, and see them as a very tough bump in the long road of life.

Surprisingly, I never became angry or questioned, “Why me?” Of course, I questioned what had caused this, and I was frustrated to hear that I would possibly never know how or why this disease had so harshly attacked my body.  However, I decided very early on that I would not let negativity control my life. Frankly, negativity had subsumed so much of my time and energy in the past, mostly due to trivial, petty things. While I had always lived a happy, fulfilled life, I struggled with finding the positive in things and tended to focus on the negative. After hearing the word “cancer” I vowed that would no longer be the case.

As time progressed, treatment ended and I was left alone with my own thoughts, things became very dark. My anxiety became overwhelming. You know the saying, “Life isn’t easy”?  Well, no one ever says just how “easy” dying can be.

I sat at home in the weeks after treatment so frightened that the tumor would come back. I feared that the next time, the tumor would be inoperable and that it would slowly eat away at my mind and body.  I also thought that I would have to undergo multiple surgeries, but ultimately the tumor would still keep coming back. What would happen to my husband and my family, who loved me so dearly? How much would they suffer watching me painfully and slowly die? I would do my best to push these thoughts out of my head and get back to focusing on all the positives. However, it was a constant struggle and frankly, the anxiety consumed me.

During that time, I convinced myself that any little sign of discomfort or something out of the ordinary meant the tumor was coming back. In fact, weeks before my first round of follow-up scans, I contacted my oncologist multiple times convinced that a minor head cold was a sign that the cancer had returned. Logically, it didn’t make sense. Yet, by that time, logic had not just gone out the window – it had been violently shoved out the window, seemingly never to return. I agonized that any little sensation in my arms or legs was the start of a new seizure. Given the anti-seizure medications and my prognosis at that time, the likelihood of a seizure would have been slim-to-none. Yet, wasn’t this whole entire brain cancer experience already so out of the realm of possibilities?

Scanxiety is real and it is horrible.  I often say that I wish my doctors could just schedule the scans without me knowing the date and time, and simply call an hour or so before to tell me to come in.  It would save so much stress, worry, panic, fear, etc. etc.  Scanxiety has gotten better over time, (Thank you, Ativan!) but that period leading up to my first post-treatment scans was unbearable.

Once I learned that the scans were clear, my oncologist sat down with me, extremely concerned for my mental and emotional well-being. Now that the pre-scan anxiety began to subside, I had to focus on getting back to the person my oncologist had first met, who told her, “I’m going to beat this.” I got professional help to handle the anxiety, I returned to work part-time, and I began to again focus on the good things in my life. Quickly, the overwhelming anxiety disappeared. The strong, positive person I had been when I first learned of my diagnosis began to return.

It’s been two years since I first asked, “So, does that mean, it’s cancer?”  Unfortunately, it would not be the last time I would have to ask that question.  The whole experience still feels surreal. I still worry about what the future holds for me and whether my cancer will return, yet again. None of us know what the future holds though.

After my diagnosis, I will never be the same again, mentally, physically, or emotionally. I’ve come to accept that though. Life may not be easy, and it may not be fair, but it’s the only life I’ve got and I plan to make the best of it.