Wednesday, July 20, 2011

Our First Dance

It's funny how often I get asked about my life post-transplant as some sort of comparison to my past. In the past year or so I've had people ask if having new lungs means I'm "cured", had people wonder aloud whether I feel "better than you have in years", and even had a small subset of people worry that transplant (or at least my so far kind of up and down experience with it, I guess) might not be worth it at all -- might, in fact, be "worse than it was when you were 'just' dealing with 'plain old CF.'" And, yeah, pretty much all of those are direct quotes from various blog readers, CF friends, other friends, family members, and just curious new acquaintances.

I always do my best to answer this sort of stuff accurately, but most of the time I just find myself sort of stammering around trying to find the right words to explain the inexplicable. And then, this weekend, I was lucky enough to have one of the many experiences that helps put this sort of thing entirely into perspective. So from now on, folks, here's my answer.

My cousin got married last Saturday.

She was, just in case you were wondering, a beautiful bride. For anyone who knows her (or knows anything about my family, really) this really shouldn't be surprising -- the vast majority of my nearest and dearest are stunning both inside and out. She was also, and this is the awesome part, 100% the center of attention throughout her special day (and the many hectic -- but special -- days leading up to it). Exactly as it should be.

I watched her get married without interrupting the ceremony with my coughs or the hum of my O2 concentrator. I watched her and her beloved exchange heartfelt, handwritten vows and promises. When she asked me to do a short reading (SUCH an honor, by the way), I was delighted -- not scared or spending my time searching through medicine cabinets in the reception hall for a contraband bottle of cough syrup. I ate their fantastic wedding cake (with insulin, of course), I laughed easily at the toasts their many friends offered up to the radiant couple, I marveled at the way the rainy weather seemed to clear up just long enough for sun-dappled vows, I watched family movies of both of them that seemed to re-emphasize the joy that comes with growth and community, and then Donor Bob and I hit the dance floor for the first time together. I danced. Holy f-ing shit, guys, I DANCED!

Now, granted, I wouldn't say I danced the night away or anything. Let's not get carried away, shall we? My prograf levels have been ridiculously low lately -- even slipping to "undetectable" at one point, despite the fact that I do NOT screw around with the dosage of those drugs. As a result, I've started taking the pills and dumping them under my tongue three times a day to see if sublingual absorption and more frequent dosing can help bring all the pieces of the puzzle back together and stabilize my levels. Which means that every so often I stumbled in from some activity and sat amongst my extended family members carefully pouring the powder of several tiny little capsules under my tongue. And let me tell you all right now: for a gal who can swallow close to 20 pills without blinking an eye and with only a small sip of water, this method of time-consuming powder puffing was a little much. There's very little way to do it without attracting a good deal of attention in the process anyway. Chalk it up to family bonding, right?

I also spent a good deal of time and energy trying to make sure I didn't eat the wrong thing (thanks, immunosuppression!), or hang out too much in crowds, or bury my nose deep into the beautiful bouquets of fresh flowers my cousin and her wedding party had picked for the big day. I had to understand that I do, in fact, still get very tired very easily, that I don't have unlimited energy when I'm on a bunch of drugs, that I'm still coughing up some junk (spent a few hours of the weekend on the phone with various doctors to schedule surgeries and whatnot), and that I'm still combating a breathlessness that I hope is not associated with the lower prograf level. Yikes. I did my pills -- both prophylactic and treatment --, inhaled cayston 3x a day, was a little extra careful with my brand new port-a-cath site, and tried very hard to be a good transplant patient while still being a fun human being.

And then I danced.

Just imagine not seeing your extended family for several years (actually having cousins you have NEVER met in person) and then suddenly needing a lung transplant and calling on all of them to love you and support you. Imagine that they come through with flying colors -- going in every sense above and beyond the call of duty -- and that because of their love, their light, their prayers, their support, and their help (coupled, of course, with not just a little bit of kindness from strangers), you and your immediate family are still together, still one complete unit of a larger whole. Still, dare I say it, even relatively sane. Then imagine seeing all these people again -- all of those who have been worrying and loving and praying from afar -- and being able to walk into the room not just as yourself, but as someone who is there for another. As someone who, for one brief instant, is able to maybe pay back even just a tiny fraction of the love and attention that she received.

Kind of makes the whole prograf thing seem kind of insignificant, right?

So next time I get asked what life with new lungs is like, I think I'm going to dodge the question -- or at the very least punt it over to someone else to answer. Because I think my family would all agree that the woman who helped celebrate her cousin last weekend was not the little girl with CF that they knew as a child. And I promise you they wouldn't say that I was cured after witnessing my attempts to freebase immunosuppressants or eat enough gas-station junk to maintain my weight. They wouldn't call me a brand new person because, to them, I will always be Piper (and always the one who might be willing to throw the word "mawiage" into the poem somewhere, right guys?). And they would never say that it wasn't worth it, because, after all, I was there with them, celebrating her -- and of course they saw me dancing.

What I think they would say is that it is what it is. That the world is still turning. That beautiful, funny women are still marrying handsome, selfless men. That sunlight still occasionally makes a completely unexpected appearance at just the right time. And that thunder and rain are still equally a part of the process -- but that even those can sometimes bring just as many laughs as they do tears. Most of all I think they would say that the truest gift of all, sometimes, is the one that lets you be there as yourself, rather than simply as your disease. The one that lets you forget about your scars for one moment and focus instead on the miraculous joining of two very special hearts right in front of you.

The one that lets you finally hit the dance floor, despite your complications, in celebration of life, of love, and, most of all, of everyone who ever helped to get you through.

With love, light, and best wishes to Rachel and Chris, July 16, 2011.


  1. Oh my beautiful cousin, you knew that post would make me cry, right? So good to spend time with you this weekend ...laughing, eating junk, watching family videos, listening to stories about our quirky and wonerful family, and dancing! Next gathering you and I should host a viewing of the Princess Bride. Seriously. Thank you donor Bob. I love you,Piper.

  2. Thanks, Piper. Beautifully written, and wholly felt.

  3. Great story. My brother is getting married in September and that is one of the main reasons I felt compelled to finally list myself for transplant back in December, 2010. On March 21st, I underwent a successful double-lung transplant and am now biking 10 miles a day and just starting to run again. I've also been to a few weddings since my transplant and the difference, which you so beautifully described, is what makes the transplant worth it.

    Thanks for your blog, Piper. It has been an inspiration to me for a a long time. I remember being in Paris last summer and telling my friends about the news of your transplant. Your courage and strength helped me to overcome my fears of transplant.

    Hope all is well and keep up the writing,


  4. Ashley loveslovesloves to dance and often I'm so amazed that she even CAN dance that all I can do is stand there in awe. I can picture you dancing and picture you joyful because I've seen her do it. It is a beautiful thing.

  5. Made me be able to dance again....Thank you Donor Bob!

  6. My mom best described life after post-transplant to me one day when we were talking health etc., she just looked at me with all truthfulness in her eyes and said "You've changed, yet you haven't changed" and i so got that immediately and it made sense to me and now that is my answer to life after double lung transplant: I have changed, yet i haven't changed and i like it :) God bless Piper

  7. So, Piper... inquiring blog readers want to know... Break dancing? Hip-Hop? Waltz? Disco? The chicken dance? Or all of the above? :D Glad to hear you're able to enjoy quality time with your family and loved ones! ~Juliet