Sleeping Lessons

It's 2:27 AM here in New York. My puppy is curled up peacefully next to me, dozing with his head resting lightly on my leg. He seems happy and comfortable, like there's nowhere else he'd rather be in the whole world. Most of all, he seems secure, which is amazing given the fact that just a little over a year ago he wouldn't sleep in my room at all unless I closed the door to lock him in. His preferred resting place back then was with my mom, not so much because he likes her better than me (though he does love his "grandma", no doubt about it), but because my labored breathing, humming O2 concentrator, frequent coughing fits, and restless shifting during the night made him visibly nervous. Loyal little guy that he is, he normally started out with me until I turned out my light to fall asleep, and then he was off to quieter, less scary pastures. And who can blame him? I would have run away from CF if I could have, too.

So it's nice to have him here with me again and to know that I've gotten to a point in my disease where I at least no longer scare small children and animals with my symptoms. Or, you know, at least not often.

See, as I already mentioned, it's about 2:30 in the morning my time. I was asleep until about 45 mins or so ago, resting after a long day that (once again) included a visit uptown to my favorite hospital, as well as a couple of other appointments, a PICC line dressing change, some prescription refills, and all the other fun activities that seems to go hand-in-hand with his disease. There's not a ton of crazy stuff going on right now, just inhaled and oral antibiotics for an infection found during my bronch last week, a little bit of scheduling for a new port placement and a much-needed sinus surgery, and a confusingly low prograf level. The last one bothers me a lot, mostly because I can't figure out how to make this drug stay consistent with my body. I take it absolutely everyday at the right time, and the level is still all over the place, which is -- as we all know -- one of the single most frustrating things for a patient (and probably for a doctor as well). But even with that little kink in the plan, there's still nothing really going on right now that I can't handle, or that I haven't handled about 9 billion times before, for that matter.

Only I just woke up crying. And when I did so, I noticed that, for the first time in almost a year, my dog wasn't with me. He wasn't even with someone else, since it's just him and me tonight in the apartment. He was, instead, out in my living room curled up in his bed -- the one that he sometimes uses as a last resort when he wants to sit somewhere and I'm up moving around. I was able to coax him back in here with me, of course, but I wouldn't say he was totally eager to give it another try. The good news is that he is, as of now, perfectly content right where he belongs.

And I know that I will be too, eventually. I feel relatively hopeful, at least, that things are going to get easier and that sooner or later I'll be free of infections and IV lines and nebulizers three times a day and constant appointments and procedures and whatever else. (Note to the universe: as far as that whole "sooner or later" thing goes, I'd really prefer sooner, if you don't mind.) And it's not even that those things are honestly all that terrible anyway -- after all, I did grow up with cystic fibrosis, so let's be honest: I'm used to it -- but it's just that right now I kind of wish that I could run away from it all again, and that's not exactly where I wanted to be more than a year out of transplant.

I think the strangest part of trying to manage all these expectations is that we have to have them because they give us goals, they give us drive, and they give us hope. But they also give us preconceived ideas of things that don't always work out exactly the way we plan them, and when that happens we can sometimes find ourselves awake in the middle of the night -- tired, cranky, and trying hard to convince our loved ones, friends, or even our dogs that we are actually just a little shell-shocked, not crazy.

As for me, though, I think I may need to take a cue from my darling Sampson (who, by the way, is now sleeping on his back with his tongue out, because that's how he rolls) and just do the best I can to regroup, resettle, and trust that things are going to seem less overwhelming and less scary in the morning.

Or, at the very least, that next time I wake up, he's going to be right there beside me.

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