Tumor-versary

Some time during these twelve pensive, recovering, normalizing, healing months, I turned my radiation mask into some art.  I don't create things... like, ever.  So this was a big deal for me.

(I have to shout out to Maeve Griffin, Moore College of Art and Design grad, who gave me some of her discarded studies for her work Vain, which serve as background, in part, on both of my little canvases.  She is a great artist, check her out: http://www.maevegriffin.com/ )


Many somber thoughts have been spent thinking about how this is currently the end of June, and that last year on June 21, I was admitted to the hospital after an MRI revealed a gigantic brain tumor.  Last year on June 26 I was having hours and hours of brain surgery.  Last year on June 30, I was discharged from the hospital, barely able to walk, barely able to see, and barely able to stay awake for more than a few hours a day, and loaded up with drugs.

It has been a year since my crazy ride with cancer began.

One of the things I started doing last fall which turned out to be a great therapeutic outlet while recovering from radiation, was to write my experiences down.  I chose to write the important events exactly how I remembered them, but I gave the experiences a different cast of characters.  If I ever finish writing it, my story will be about a young lady (not me) going through my same struggles, and some struggles unique to her as well.  The moral of her story will be the same as it is for me-- you can get through anything, one day at a time, and build the life you want in spite of the odds.

In this story, I wrote down exactly what I remember thinking and feeling when I was coming to after 6 or 7 hours of intense brain surgery.  This is what I remember:




-->

Red-black darkness.  I am frozen inside a lightless tunnel of raging static that crushes my inner ears.

I do not hear or see or speak or move, but I feel the darkness, I feel a fiery heat, and I feel the static.  The epicenter of these feelings is the back of my head.  That deafening static is inside my nerves, screaming to my senses that the back of my head is in great agony.  Is this what it feels like to have the back of your head shot off?  To have a burning axe come down on you?

Wait...this is pain.  I am not feeling sound or color, I am feeling pain.  

--I am suddenly cognizant of my own thoughts--

If I am feeling pain and I am conscious, then I must be out of surgery and I AM ALIVE!

I am exultant at my discovery, but still cannot move.  I cannot remember how to move.  Time passes, I fade in and out, but I know I am alive.  I wait for my life to come back to me completely. 

But it won’t come back.  

I know I am breathing and thinking and in pain, but I otherwise feel utterly lifeless.  I am a zested lemon—a mound of pale pith, scraped clean of my essence.

More time passes.

Now I can hear.  I begin to hear whispers.  I recognize the voices of loved ones.  They are quiet, standing guard in the corner.  I strain to hear their words, but cannot understand them.  After taking several breaths as deep as I can manage, I tell my mouth to shout, “Sweetheart!” but all I hear is a slurred, breathy sigh before my lips collapse onto each other once more.  I squeeze my forehead to try to open my eyes, but my eyelids will not move.

This struggle went on for some time, it felt like days, it may have been mere seconds, and I finally communicated with Jack and my parents.  I still shudder when I remember feeling only that loud, hot, red blackness.  I have such strong memories of the moment I realized that I had survived the surgery.  I hate to admit that I was a tiny bit surprised that I was alive.

It seems like that was so long ago, and it surprises me that it was only a year ago.  So much has happened in that year, sometimes I feel like I'm not even that same person anymore.  Yet, last year will forever color what I do in the present and future.  I think of a (somewhat-depressing) quote-- one of my favorite quotes from one of my favorite books by one of my favorite authors:

So we beat on, boats against the current, borne back ceaselessly into the past.

-F. Scott Fitzgerald

Next month I get to see my Neuro-Oncologist at Yale for a follow-up MRI, so we will see how things are faring.  I feel well now, and we are planning for our future, which is what matters most.

For your continued support, concern, and prayers, I can never thank you enough.  So many people that I hardly know --or don't know at all-- grab my hands when they see me, stare into my eyes, and ask, "How are you feeling?"  They don't ask like we ask passing strangers, they ask like they really want to know the answer, like their own happiness depends on my answer.  I know that I am in the hearts and prayers of so many, and I truly appreciate it.

One year down, and hopefully many, many more happy, healthy, cherished years to come!

Mood Swings and Honesty

Preface:  This is meant to be funny.  While it is a sadly true tale, I don’t mean to criticize anyone, it’s just that the humor of my not good-natured thoughts is not lost on me.  I recorded many of my recent crazy thoughts to share, just to illustrate how hilariously ridiculous they were :-)

This may be a bit personal, but anyone who’s been around me much recently could probably tell you this already.  Since my surgery, I have found myself to be more…honest.  Not more honest as in, I no longer steal from the cookie jar, or whatever.  What I mean is that I kind of word-vomit my feelings now, even if they might be a little offensive.  Maybe it’s the idea that life is too short to bottle your feelings…or maybe its just brain damage. 

A professional at Smilow Cancer Center up here at Yale who reviewed my file and talked with me after I reported some odd mood swings and other emotional stuff, reminded me that my brain has been traumatized.  She compared my post-op brain with someone who has a Traumatic Brain Injury (TBI)! 

I immediately thought of poor combat veterans with TBIs who can become violent and erratic— Huh?!  Am I like that?? 

Maybe telling people, deadpan, that the things they are saying are “utterly ridiculous,” isn’t so bad of a side effect after all!  She reminded me that things are still working on normalizing, including brain-produced hormones and such.

I am trying to quell my Negative Nancy moments, and I do think things are improving.  I have so far been very successful in letting my Prefrontal Cortex delete the mean Facebook and Instagram and Pinterest comments I SO want to write.

Here’s an example of my Mean-Lady-Brain comments that have FOR REAL been in my head and I have stopped myself from writing:

You’re seriously still doing that summer camp job?  Don’t you think its time to grow up?

Is that honestly the best selfie you could come up with?  It’s hideous.

Nice cankles, homie.

Well, I can see that SOMEBODY didn't hire a wedding planner…

It’s a shame you don’t know how to dress yourself.

DAAAAANG!!  You must have gained 70 pounds since I saw you last!  Stress, much?

Why are you posting that crap about your emotions?  Fishing for compliments is immature, and nobody cares about your so-called ‘terrible day.’  Try having brain surgery and then tell me what kind of day you’re having. [That one I’ve wanted to write like 100 times…]

#SucksToSuck

And oddly, something as benign as food pictures can bring out the unfeeling fun-sucker in me…

“That looks disgusting.  I feel sorry for your gastrointestinal tract.”

“Learn to cook, moron.  My baby niece could have made that…better.”

“You must be from Utah, because nobody else in the country/world would concoct something so full of Oreo crumbs and barf and call it ‘baking’…let alone actually eat it.”

“Aaaaaand that’s why you’re so fat.”

 

Ouch, right?  (But seriously, what kind of dummy puts the word DIRT in the title of her dessert recipe?!?  Gross.  Just, no.)  I’m sorry for thinking mean thoughts about literally everyone I know, and so many people whom I don't know.  My brain made me do it ;)

But I could make an excellent online troll, no?