“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.

vacation-keep-calm

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, does that mean it’s cancer?”

“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.