Tuesday, November 17, 2009


So I have a HUGE couple of weeks coming up with the holidays approaching. I can't even begin to say how excited I am and how much I have to be grateful for (as always) this year. It literally blows my mind when I think that in the next TWO WEEKS I will:
  • Enjoy out-of-town visits from my two best friends from college (one of whom was also my roommate for three years and is bringing along her boyfriend, who I've never met!), my father, my godmother, and my grandmother, along with a visit last night with a childhood friend I haven't seen since I was her bridesmaid several years ago.
  • Film a CF awareness video on waiting for transplant for the CFF's American Airlines Celebrity Ski event -- which I've been blessed to be a part of for over 20 years.
  • Attend a museum exhibit opening featuring some of my sister's fashion designs on display!
  • Stop IVs!!
  • Have a final follow-up appointment to hopefully end the "Not-Quite-So-Great PICC Clot Fiasco of 2009." Good riddance to bad rubbish.
  • Celebrate my godmother and grandmother's birthdays with dinner and a Broadway show.
  • Cook a Thanksgiving meal at home, to be enjoyed by friends and family in my own cozy little apartment, including my family's famous southern cornbread stuffing.
  • Celebrate my 28th birthday -- first with a family dinner, then a few days later with friends.
Wow. Okay, I think I just got tired typing that all up. Honestly though, I'm sooo ready to just enjoy this special double holiday (birthdays + TG) with some of my absolute favorite people. And when I remember that people are flying in from as far as Colorado, Texas, and California to help make all of this happen and to accommodate MY schedule, well, it just kinda starts to seem unreal. I don't like to turn this blog into a contender for the cheeseball of the year award, but right now I'm feeling pretty warm and fuzzy -- and I wouldn't have it any other way.

Anyway, since absolutely none of that had anything to do with the title of this post (or so it would seem), you're probably all a little confused right now. See, as excited as I am about all of the above, and despite all the many warm fuzzies swirling around and filling my head with visions of mulled wine and amazing homemade stuffing, I'm also a little, well . . . scared of it all, to be perfectly honest.

I'm nervous because I know that my health depends on following my routine, and we all know that the first thing out the window during huge family gatherings -- no matter where they happen -- is predictable routine. I also know that my body needs more rest than it used to -- that as fun as it is to push myself until I drop, it's not always the wisest decision in the long run. I'm ready as can be for all the nice dinners and social events, until I pause for a moment to remember that this year I'll have to make decisions about when to wear oxygen when I'm out on the town. And finally, as psyched as I am about all the yummy calories coming my way (a CFer's favorite part of the holiday season, for sure!), I can't help but remind myself that it might be tough to make time in between all that eating and socializing to hit the gym.

So what's a gal to do? I think in the past I pretty much wrote off the holidays as a bit of a free for all. As long as I stayed on top of my treatments and didn't overwhelm myself to the point of total sickness, that was good enough for me. After all, it's only a couple of weeks, and CFers are nothing if not masters of "pushing through it."

But this year, I'm approaching the whole thing from a slightly different perspective. For starters, I don't know when the call for transplant might come, and I don't honestly have two weeks to slack off on important things like my exercise routine, because who knows if I'll have the time to make those up after the holidays are over? Perhaps more important, though, are the promises I've made myself over the past year, like the promise to really focus my energy on getting STRONGER every day, and of course the promise to always consider my health -- because if I'm going to accept this gift of life from someone then I'd damn well better be ready to make the most of it.

Of course, I'm not planning to put a halt to any of the holiday fun. Health might come first right now, but it doesn't have to trump life (which is, after all, the reason we do all this stuff in the first place), right? So I've decided to make a simple change and ask one question that might make all the difference:

What Would Piper Do?

In other words, what would my body and spirit have me do over the long run? Sure, the turkey makes me tired in the moment, but that doesn't change the fact that Piper would still want to get in at least a walk. Much as I love to pack my days as full as possible, Piper has recently learned the value of resting and meditation to help de-stress and re-center. And yeah, sometimes I don't like the way the oxygen makes me look in public, but I'll bet Piper would rather wear the stuff and feel better so she can actually celebrate during all these birthdays and reunions. After all, despite my in-the-moment reservations, Piper is (hopefully) learning not to place so much emphasis on what other people might think, and maybe even to be proud of the cannula that shows the world that she can still get out of the house and have fun even while needing a little extra help. (Okay, so maybe not quite there yet, but making baby steps!)

I'm the first to admit that it's not a perfect approach. Piper, after all, is a lot of things, but she's definitely not perfect. I probably won't be able to market any "WWPD?" bracelets to the masses, and to be honest that's most likely a good thing. (Do we really need a bunch of Piper clones? Um, don't answer that!) But I am hoping that pausing for a second to ask myself this little question during the holidays will at least help me find that often delicate balance between life and all those other necessary things we CFers take on to manage our disease. Because when all is said and done, despite her many imperfections, Piper loves to savor things like holidays, food, friends, and family, and she also wants to be around to keep the fun going for as long as possible.

It's a tricky balance, sure, but this year I'm determined to try -- with a little help from Piper, of course.


  1. Very well said! I think alot of us CFers have to remind ourselves during this holiday season to balance our "life" (schedules, parties, treatment, etc.). I tend to over do it a little during this time with lots of parties, food, and just fun with friends and family. But my body also needs a lot of rest, and sometimes I ignore that! Best of luck with your W.W.P.D. Plan...i'm sure everything will work out and you will have fun through it all!

    Oh, and it took me awhile to get used to wearing 02 in public; I can definitely sympathize with you on that. I tried to avoid it as much as possible and literally just stayed home in my little bubble (unless it was family events); it's hard to get used to it and accept that sometimes. But hey, our bodies need the oxygen and in the long run, it will be well worth it!

  2. It looks like you're gearing up for a couple of well-deserved weeks of socializing! Between The Fiasco and The Debacle, you need to have some fun! And your WWPD philosophy is a winner! You're right, CFers can juggle anything when necessary and we know how to make the important things count.

    I have been on O2 24/7 since March. The first couple of times in public I was really self-conscious, but after that it was forgotten. Unless I see myself in a mirror, I don't even think about wearing O2. Don't stress over it! :)

  3. WOW...that's going to be great spending all that time with family and friends! Its nice that they can all come to you for the holidays.

    As for the O2, it was REAL hard for me at first to wear it all the time. I stayed home a lot and didn't want to do much, and then one day I just decided that I was done being self-conscious. I have been on the tx list for a year and half now and I don't know how much longer its gonna be but I wasn't about to stop living my life because I was worried what other people thought and now I am out living my life with family and friends and I feel great doing it!

  4. Balance, balance, balance. Ugh. How do we balance the balance?!

    Best of luck to you as you strive to find your center (and keep it!) through this holiday season.

  5. That is one heck of a busy two weeks! As we like to hear (LOL) don't over do it or push yourself hahaha!!! ;)

    Love girlie!!!

  6. Hey Piper -

    Is there any way you could make the font a little bigger on your blog? I had to copy and paste it into a text document to read it. Am I the only one??


  7. Hope that's better Laura! Sorry about the tiny font -- I'm a sucker for small print I guess ;)