Monday, June 20, 2011

Surgery, Diagnosis, and Jagged Scars

Over the past six months or so, I’ve learned that denial isn’t always a bad thing; at times, it is a necessary crutch that we use to support us when we aren’t ready to face what is happening head-on.  It’s what we lean against until we have something stronger to put it its place, a temporary lifeline of sorts.

When we first learned about Dad’s diagnosis, we were told the prognosis was poor.  I, in particular, could only deal with the shock and horror of this news through denial, which came out in the form of Hope, cranked all the way up to 100%, just to make it through the day. I needed that Hope to prop me up so that I could provide support needed for Dad and when it was my turn to be “the strong one” for someone else in my family.

We were told even before the surgery that the "large mass" really couldn't be anything other than GBM, the most aggressive form of brain cancer, and how terrible the odds of even surviving a year were, but at the time we were frantically busy trying to hold ourselves together, trying to get by on very little sleep, trying to keep Dad comfortable emotionally and physically, trying to do what we thought was helpful and right, and trying to protect him.

We didn't have time to process what was happening.  We just wanted to get him through the surgery, and, when that was done, we focused on three things:  his post-surgical pain management, gearing up to fight like holy hell to get him the best treatment possible, and attempting to control information that Dad was given about his diagnosis so that we could protect him from SOMETHING FOR GOD’S SAKE!

It was hard to see Dad after the surgery with lots of staples in the top of his head, still having trouble remembering certain things and reasoning, and still without much strength or sensation in his left side.   Even more than the scarring that the giant cut in his head would leave, we were starting to realize that the battle would leave jagged scars all over all of us and there was nothing much we could do about that.

We kept extremely detailed notes of everything that went on while Dad was in the hospital, including what was said by the staff and Dad himself, what he ate or drank, and how he slept (always poorly – more on that later).  We charted medications and vitals and made extensive lists about procedures, recommendations, treatment options, doctors’ credentials, questions, and things to do.  All part of our trying to control a situation that was COMPLETELY out of our control.  Whenever a new member of the medical staff walked into his hospital room, Dad would jokingly say, “Don’t screw anything up in here.  One of my daughters is a lawyer and the others in my family write everything down.”

When I look back at the many notebooks of careful notes from during that time period, I remember feeling like through documenting and regimenting everything that I could STOP what was going on.  I so desperately wanted to change the channel back to Normal!  I remember on several occasions thinking about how great it would be when Dad SHOWED those damn doctors and beat the odds.  We would high-five the ones who helped us and flip the bird at the ones who didn’t, sprint out the door, and never look back.  "F-U, BRAIN CANCER!  YOU HAVEN’T MET MY DAD, YET!  HE IS A BRILLIANT IRONMAN TRIATHLETE WITH AN UNSTOPPABLE FORCE OF FAMILY MEMBERS SURROUNDING HIM," I said on a daily basis (sometimes out loud, sometimes out loud in public).

Once he found out about his diagnosis a couple of days after the surgery, we regularly (nightly, in fact) talked to Dad about our 100% certainty that WE WERE GOING TO BEAT THIS THING.  Running with Hope, you see, is a little bit like running with scissors.  Hope is a tricky thing:  we need JUST ENOUGH to keep going, but TOO MUCH can be every bit as dangerous as not enough.

And now, after being forced to skip ahead to the end of the book when I wasn’t nearly ready, I keep wondering when the bad-day memories will fade even a little so that the good-day memories can be in full-color again.  Every time I get to the place of a good-day memory, it’s like someone is adjusting the settings on the TV; with the slightest interference, the screen goes to black-and-white or even to a completely fuzzy screen.  In a flash, I can be back in the terribly uncomfortable plastic chair in the hospital room, stretching so that I can reach Dad to hold his hand and straining to get my ear close enough to his mouth so that I can hear his quickly fading voice.  It breaks my heart again and again to remember the terror and pain in his eyes during that time and the fear in his voice when he asked over and over, “When can I just go home?”

I’m sorry, Dad, that it took all of that for us to see it, to fight the right fight, to wall ourselves up so that you could see that we were as ready as we could ever be for you to go on ahead.  We know now that, every minute of every day from when you couldn’t finish that run on Oct. 23, you were fighting with everything you had ever had to be there with us and for us.  I’m sorry that you thought you weren’t being tough or “taking it like a man,” when actually you were braver and tougher than anyone I’ve ever known.  You had a few more important things to teach us, though, and we finally got it, didn’t we? And now we wear these jagged scars with respect and pride as think in awe of how you did go Home, much in the same way you lived, with dignity, honor, strength, and love.  

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