Tuesday, September 18, 2012

Don't Think Twice, It's Alright.

It's been approximately 36 hours since I first checked into the hospital for this stay, not that anyone's counting. So far in that time I've received 2 doses of 500ml IV solu-medrol (the steroid, and for perspective my maintenance dose is 10mgs), 1 dose of IV ganciclover as a CMV prophylactic (with another to follow later tonight), 2 doses of oral prophylactic antifungals, 2 doses of oral antibiotics for my pseudomonas, and 2 doses of 100ml rATG (aka, "rabbit juice") infused over approximately 8-12 hours to soften the blow of the side effects.

Also in that time frame, the elderly gentlemen across the hall from me have shown no signs of learning how to properly secure their hospital gowns in the rear end area. Not that I'm looking or anything.

I woke up this morning feeling kinda crappy. The first reason for this is that "woke up" is a bit of a misnomer; it would be more accurate to say "after remaining awake for the entire night, I felt pretty crappy in the morning when OTHER PEOPLE were waking up." Shocker, I know. IV steroids seem to do that to me. Add onto that the combination of general malaise from the drug itself and people coming in and out of my room all night to monitor my side effects, and you'll probably get the general idea of why it can be so hard to sleep in this place.

The second reason for the crappy morning is equally shocking: turns out human bodies aren't so hot on rabbit blood. Crazy, right?

But it ain't no use to sit and wonder why, babe. We just do what we do here to keep me breathing, and quite frankly I'm okay with that.

It's weird to think of poison keeping me alive, but in all fairness that seems to be what's happening. Treatments like this remind me that my body is essentially maintained in a state of toxicity for its own good. Transplant is like a sticky kind of compromise I reached with cystic fibrosis and my natural desire to live: I gave up my lungs and CF gave up part of its hold on me, and in return I got a beautiful life full of love and laughing and walks with my dog and talks with my friends and the sight of the Colorado mountains or the New York City skyline at night. And CF and its cronies got a kind of "get out of jail free" pass for most of my immune system function and now they get to play fun little games with rabbit blood. Sick little bastards, aren't they?

But don't think twice, it's alright.

When I think of this disease it's hard for me to see it as anything other than a monster, even if my life is in someways "better" for it. Meaning, I guess, that my life is better for pretty much every experience I've been lucky enough to survive and learn from, even if it can be tough to notice in the moment. I won't say I'm grateful to CF (it's taken too many of my friends for me to EVER say that), but I am grateful for the challenge. And if I can't say that I've defeated it yet, I can at least say that I've won a few well fought battles -- and come out the other side as someone I hope I can be proud of. Just as I know I'll get out of here soon even if 5-7 days seems like an eternity right now, I also know that my walk with CF and transplant won't be over for a while. I haven't shaken this little monster, but at least I was strong enough to change the game.  So if I can't say goodbye until the moment when we all can say it together, well, I know that's alright, too. As a matter of fact, I'm looking forward to it.

So I'm walking down that long lonesome road, babe
where I'm bound I can't tell.
But goodbye is too good a word, gal
so I'll just say fare thee well.
And I ain't saying you treated me unkind,
You could've done better,
But I don't mind.
You just sorta wasted my precious time.

But don't think twice, it's alright.


  1. I can tell you must be doing a-ok, there, because the boredom is making you write a lot. :)

  2. hugs and love, piper. your spirit + bob dylan makes my heart happy!


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  4. the only version i've heard is by Peter, Paul and Mary ... which i love!