Friday, January 16, 2015

The Word Itself


It was only a couple weeks after we moved (back) to STL that our world was turned upside down.  Jill had just begun her incredible, but shortened career at Wash U (aka Disneyland).  And I was getting settled in my new office space in the Loop.

Then a biopsy was scheduled.

Now, I was familiar w/ the word 'biopsy,' but not exactly clear on the meaning or purpose of the test itself.  When it was made clear to us that a biopsy would be done to rule out certain ailments, I was game.  We were game.  Sure, do what you've got to do.

Because, in my mind, Jill had already dealt w/ her fair share of medical maladies in her youth (pre me).  Those days were in the rear view.  She had her fill for one lifetime.  Smooth sailing and blue skies ahead.  We're good.  We're always good, damn it.

So, when the physician greets you in the waiting room and suggests we talk in a private room, I don't blink.  I figure this is standard protocol.  Keep it all private and carry on.

My mother in law, on the other hand, knew what was up.  She knew a 'private meeting room' didn't mean good news.

We jam ourselves into this cold room and the cutter closes the door.  We're greeted by a shitty hospital couch, two ergonomically incorrect chairs and a desk for God knows what.  Oh, and the tissue box.  The tissue box should have been a sign.  (But, I try to consciously omit 'should' from my vocabulary.  It's a dirty word.)

Again, I'm fine.  We're fine.

We plant ourselves in the uncomfortable seats and the white coat begins to tell us about the procedure.  It appears Jilly has cancer.

Wait...wait wait wait...wait...what?  Check your charts, buddy.  This is my wife.  Jill Marie Lustberg.  You must have it wrong.  We don't get sick.  She doesn't get sick.  Not like this.  This, unfortunate as it is, happens to 'other people.'

But he continued.  And as words fell out of his mouth, I remember feeling wrapped up in a swirl of uncertainty.  The floor just dropped out.  What the fuck do you mean?  What the fuck does this mean for us?  For Jilly?  For Ro?  For me?  

And if I'm honest - and damn me for being so fucking honest, I did have the thought, how am I going to raise a child on my own?  Seriously, w/ little-to-no detail about Jilly's prognosis, my mind already went there.  It's embarrassing to admit.  Of course, that thought was immediately followed up w/ another - Fuck me.  I am not the focus here.  Jilly is.  Get your priorities together, you fucking waste of space.  Shut up and step up.  Easier thought than done...

So, that was really the first time the word cancer hit me.  Hard.  In the face.  In the gut.  In the heart.

I don't know if the heaviness of the word hit me in that cold room or afterward when I was w/ Jilly in post op.

She hadn't been notified of the diagnosis and we all agreed the message come from the doc (though w/ me present) as he could provide context and field questions we knew Jill would have.  (If I were the messenger, my responses to Jilly's questions would undoubtedly be, "I don't know.")

I found myself bedside as Jill's anesthesia wore off.  I remember her asking me point blank if they found anything of concern.  I looked at her, looked away, and responded w/ another topic to volley back and forth.  Thankfully for those few moments before the doc arrived, she didn't pick up on my tap dancing.

When the doc rolled in, it was the three of us - Jilly, me, doc.  He told her.

I'll never forget Jilly's face.  And without going into detail (b/c some memories are simply made for me alone), the word cancer took on a whole new, personal, and horrid meaning to me.  To us.

It was that moment (and the subsequent moment when Jill was diagnosed metastatic years later - again, a moment I keep for myself) that injected a fear into me that I will consciously never let go.

Not to mention hearing your two year old daughter (or 3, 4, 5, 6, 7, and now 8) let that word pass from her lips.  No fucking child should have any idea about cancer.  (There it is again.  That word - should.)  And hearing that as the father...well, it fucking melts and breaks me each and every time I hear it come out of Ro's mouth.

Yes, I think we probably all share a general fear of cancer.  It's hit friends, family, even maybe ourselves.  Without a doubt, it's certainly impacted all of our lives in some capacity.

But, for me, while I certainly fear the meaning, the repercussions, and the sheer ugliness that it inflicts, since that original diagnosis day nearly seven years ago, I genuinely fear the word itself.

I go out of my way not to use it in conversation.  If you've recognized in previous posts, I rarely type 'the c word.'  Instead, I use words like 'disease' or 'diagnosis.'  For whatever reason, these words are more benign (for lack of a better word) inside my head.  'Cancer,' on the other hand, is a malignant monster that preys on anyone.  It's a fucking equal opportunity killer.

It has a hold on me.

And while it's not something I'm proud of, I voluntarily embrace this fear.

I think popular belief is that you can't let something like a word have such an emotional hold on you.  Don't give into it.  Rise above it.  After all, it's just a word.

If that position works for you, so be it.  Go w/ it.  Onward and upward.

For me, that word - that godforsaken word - is so loaded with upheaval, meltdowns, and life altering challenges, that I refuse to not let it carry the weight it deserves.

Please don't confuse this fear with respect.  I spit in the fucking face of cancer.

But, at the same time, it has so significantly altered my life that I can't disconnect the word from that emotion.  (Shit, does that make sense?  It does in my jaded brain.)

Jilly never knew this.  (She knows it now.)  Even when she would use the word (and she would use it freely b/c she is a super hero), I'd cringe.  If we could play back those moments, if we looked closely enough, I imagine we'd see the slightest flinch in my face.

So, do I recommend adopting fear of a word?  Nope.

Do I hope that Rory will adopt such a fear?  I do not.

Will I carry this fear w/ me until the day that I die?  Right now, I intend to.

All love,

J, J, & r


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