Allelujia! I’m Outta Here! But…

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After my initial surgery in 2014, I was released on Easter Sunday.  I was raised Catholic, but I wouldn’t say I am a practicing one, which I won’t go into the details or reasons behind.  Regardless, Easter does have a beautiful meaning.  It is symbolic of rising up, celebrating new life and for those who believe, it is a day of miracles.

I found symbolism in being released that day.  I was celebrating my new life as a cancer survivor.  I was someone who had just overcome overwhelming, dangerous, potentially life-altering (possibly terminal, but we won’t go there) brain surgery.  I was walking out of that hospital to return to my own home, my own bed, a hot shower and all in all, a return to a semi-normal life.  My surgery had been a success in all ways possible.  I felt it was a miracle.  Someone up there in the heavens had watched over me.  I have no doubt about that.

However, a strange phenomena that comes with the release from the hospital is a feeling of fear and unease.  For days, you had that “Call Button” right next to you.  If you needed anything, a nurse was right there to assist you.  If the nurse couldn’t ease your fears or your concerns, well there was a team of doctors who could help as well.  You were constantly monitored.  It was safe.

However, after the discharge from the hospital, that all changed.  You were essentially on your own to monitor everything you felt, experienced, etc. (of course, that would be different for those who required home services).  Was that feeling in my leg the beginning of another seizure?  Was the pain in my head just a normal side effect of the surgery, or was it something more?  What if I fell?  There was no physical therapist at my beckon call.

Then, there was the feeling of helplessness.  I had to have someone with me at all times for weeks.  It required my husband and family to all coordinate their busy schedules.  My husband didn’t want to rely on someone else, but life happens – he had to work.  I had always been a fiercely independent person.  This was all so new and so overwhelming.  However, I was fortunate to have all the support I needed.

At that point, I also had never met a fellow cancer survivor.  I couldn’t turn to someone and ask, “Is what I’m feeling normal?”  “Will this fear ever resolve, or will I be spending the rest of my life fearing things like another seizure, or worse even, this tumor coming back?”  Sure, I talked to my nurses and doctors about all of this.  They of course were kind and understanding, but I needed someone who had literally gone through this personally.

So, I began researching organizations dedicated to brain cancer and thankfully found the National Brain Tumor Society (braintumor.org).  Once I learned about their fierce advocacy, research and support systems, I looked no further.  I immediately started fundraising.  I was less than a month out of surgery and I contacted everyone I knew asking for donations.  By the next month, I was the highest individual fundraiser for their upcoming local event.  I truly believe that my incredible dedication to this organization saved me from some very dark, very detrimental thoughts.  I just dove in!  There simply wasn’t any time to focus on negativity and fear.

I cannot lie.  There were some dark moments.  I am fortunate enough to say though, they did not come often and they did not consume me.  My dedication to the National Brain Tumor Society (braintumor.org) consumed me instead.  So much of my strength and positivity  came through my work to advocate and fundraise.  It was my therapy.

Of course, my treatment did not end with the release from the hospital.  It would be weeks before we came up with a plan and that is a whole nother story for a whole new post.

“Everything Happens for a Reason” and the Judgment Zone

Throughout the last two years of living with the big “C” and delving into the big “C” world, I’ve met countless other survivors.  I’ve joined several support groups.  I’ve become heavily involved in various cancer charities.  Now, I’m blogging and finding other bloggers opening up about their big “C” lives.  Basically, from the moment of my diagnosis, I pushed myself right through the cancer club door, no questions asked.  I anointed myself a member of a club I never wanted to be a member of, and obviously, I never expected to be a member of.

Within this cancer club sphere, a topic that constantly comes up is the notion that “everything happens for a reason.”  I’ve seen that the reactions to this phrase run the full gamut –  we either embrace it unwaveringly, or it makes us want to punch people in the face.  (See below – this is a card I actually received from one of my favorite snarkiest friends)

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[DISCLAIMER: This is a “judgment free zone.”  I never judge any cancer survivor’s reactions, feelings, etc. to their situation.  Our cancer is our cancer and no two are the same.  While I may personally feel different from others, and I may embrace my experiences in certain ways, neither is right or wrong.]

So, for me, I do in fact believe that things happen for a reason.  After seriously contemplating life and death, and facing a potentially terminal disease, not to mention 3 complex brain surgeries, you can’t help but think, “What does all this mean?”

I was not always a very positive person throughout my life.  I was very cynical, even at a young age, and many times unhappy, really for no legitimate reason.  I frankly had a fantastic life.  Who knows where all that came from?  However, immediately after my diagnosis, everything changed.

I never got angry.  I never questioned, “Why me?”  Did I make jokes about how insane it was that a perfectly healthy person, who had never even been admitted into a hospital before, wound up with one of the most serious conditions you can get?  Hell yeah I did.  Some of the typical phrases I used were, “I can’t do anything simply.” or “Go big or go home.”  Every time I was asked about previous medical conditions, my standard reply was, “Nope.  Just brain cancer.”  My tumor is also so rare that my husband loves to say, “I always knew you were one in a million.”  (turns out I’m even more than one in a million, as approximately only 72 adults are diagnosed in the U.S. every year with my specific type and with all my factors.. yay me!)

I took on an unwavering positive attitude that I was going to beat this no matter what, and despite whether the end would come quickly or years and years from now, I would fight every single solitary day.  I would never ever give up.

[SECOND DISCLAIMER:  Another “hot topic” is the use of battle/war phrases to describe our cancer experiences.  There is a school of thought out there that by using those terms “fight” and “giving up” it implies that those we’ve lost didn’t fight enough, or did give up.  In no way do I believe that!!!]

So, I decided that Yes, this did happen for a reason.  I came to grips with the fact that I very likely would never know that reason.  I believe in God, and I do believe that throughout my life, every stage and every step has led to the here and now.  While I am here, continuing to breathe, continuing to get up out of bed every day and face this, there is a reason.  I mean, if there isn’t, then that REALLY sucks! All of this for nothin’????

So, while I harbor no ill will or judge those who feel differently, I don’t always feel that sentiment returned.  I have actually had relatively confrontational exchanges with survivors who do not in any way see that there is a reason for this.  In a circular-type argument though, those survivors tell me they have felt judged because they don’t embrace the notion “it happened for a reason.”  Yet, in the same breath, they roll their eyes and make slightly nasty comments towards people like me who actually do feel there’s a reason.  Hence, they’re sitting there complaining about being judged, as they’re looking me in the face judging me.

Again, I feel the way I feel.  It’s my coping mechanism.  So, along with that, I tend to distance myself from those who I feel judge my way of thinking/coping.  I understand how they feel.  Cancer is awful.  It’s bullshit.  It can kill us!!!  However, if I’m going to walk along this Earth, for however long that may be, I’m going to continue embracing every moment and believe that Yes, there is a reason.

God gives us only what we can handle.  Apparently, God thinks I’m a bad ass!