Back to School

I received an awesome email today.

Our good friends and great CF supporters over at Abbott Pharmaceuticals have announced their winners for the 2011 CFCareForward Thriving Student Scholarship. The winners (both undergraduates and graduates) will each receive a $2,500 scholarship to continue reaching their educational goals and kicking CF's butt. And, as far as I'm concerned, that's actually some of the best news ever, for a couple of reasons:

1) I know several of the winners in both categories, and I can say with absolute certainty that they are truly deserving of this prize. Congratulations to all of you from the bottom of my heart!

2) These wonderful students and students-to-be are now eligible for an even bigger prize of $19,000. Better yet, WE (as in all the members of the CF community, including every single one of you) get to decide the winners of this extra bonus prize! One Thriving Undergraduate and one Thriving Graduate Student will be selected from among the general winners, and it's up to us to help make that selection.

It's my honor to write about this contest and to support the truly awesome winners of this scholarship. As some of you might know, education is hugely important to me. The CF community is hugely important to me. Making sure that each and every person -- regardless of circumstances, physical traits, disease status, or other so-called "disability" -- knows that he or she is capable of achieving amazing things is unbelievably, incredibly, and (I'll say it again) HUGELY important to me. The fact that these CFers are out there pushing themselves mentally and physically to achieve their educational goals is both inspiring and brave. The fact that you and I have the chance to help them in this pursuit is just the icing on Abbott's already very generous cake.

Please take a moment to visit the CFCareForward Scholarship Home Page and read up on all of these phenomenal individuals. Then do your part and cast your vote for one undergraduate and one graduate student to win the Thriving Student prize of $19,000 toward their educational goals. The contest will remain open until September 30, 2011. You can vote in one of three simple ways:

• Online at www.CFCareForwardScholarship.com
• By text message at 30364
  
• Via toll-free phone numbers at: 1-888-305-9808 (Thriving Undergraduate Student) and 1-888-306-9683 (Thriving Graduate Student)

Help show these folks that we are behind them 100% in creating an even stronger community of awesome, high-achieving CFers. Help show Abbott that we appreciate this generous program to help us reach our goals. Most importantly, help support all of us by showing once again that we, as individuals and even more so as a group, are waaaaay stronger than this disease will ever be. Because together we will keep on proving again and again and again that we are all of us "thriving" in our own way -- and that we plan to keep on doing so for a long, long time to come!

A heartfelt thanks to Abbott Pharmaceuticals for their continued dedication to bettering the lives of CFers through treatment, education, support, and exceptional programs like this one, as well as to all those who applied for the 2011 CFCareForward Scholarship.

Lots of love, light, and learning to all of you, beautiful people.

A Brief Letter to a Wonderful Soul

To my beautiful cousin:

I'm not exactly sure I know how to this write this. After all, I'm sure you understand that the one thing my life experience growing up never taught me to be ready for was the death of my so-called "healthy" peers, friends, loved ones, and family members. If I had been asked at ten years old what I would say to you after your passing at 29, I would have thought they had the roles reversed. I would have been ready for the question the other way around -- would have probably been somewhat blase about it all and even curious to hear your answer -- but I would never have guessed that it would ever come down to this. To me sitting here, writing this, and you somewhere out there, hopefully receiving it. Which is why I have to be honest here: this is not something I planned on, and it is not something I know how to do well.

I'm not sure how to say goodbye to someone I hadn't seen in so long, for example, but who I thought about literally more often than some of the people I talk to on a regular basis. It doesn't seem fair that after all that time apart we should have denied at least some form of a reunion here on earth, especially when I consider the fact that I talked about you to so many people. Seriously, dude, you should have heard how much I bragged about you to people you had never even met. You would have laughed at me, I know it. Would have smiled at the thought of me strutting around the manicured quads of my southern university, stopping to tell pretty much anyone who would listen about how my awesome cousin back in California gave his class graduation speech in sign language. Would have thought it was amusing how the simple fact of knowing (and being related to) you made me interested in learning more about the deaf community. Would hopefully have been touched by the fact that I felt connected to you, even across so many miles and so many memories. Would certainly have enjoyed the fact that I could never again watch "Seinfeld" without thinking of you.

I don't like having to let you go, dude. I don't like thinking of you as not here. I know how much you were loved and how much you did with your short life, and I just wish it could have longer. But I guess in this sense, at least, I am prepared. Because one thing I do know, cousin, is that life is sometimes way too short, and that being a great person, having a lot to offer, making a huge impression on everyone you meet -- none of that is insurance against unfairness. So I know better, by now at least, than to spend too much time wishing that you were still here, or that I could simply hop a plane to reconnect and erase the lifetime's worth of experiences between us. I know instead that I have to wish you well on the next part of your journey, whatever that entails, and that I have to send my love with even more strength and energy now to reach you. But I also know that it is worth it. I know that where you are is peaceful, and I know that you deserve every single little bit of that, and so much more.

For what it's worth, my friend, I don't think I could ever go long without thinking of the laughs and the lessons and the light you gave to me. Like the fact that there is so much out there beyond CF that we have to fight -- that there are so many other things that can take a life too young, and that there is no such thing as competitive suffering. We are all in this together, regardless of circumstances, and I will never, ever forget that.

Most importantly, though, I want to thank you for helping to show me that there are many types of beauty in this world, just as there are many different ways to express it. Thanks for showing me that sometimes obstacles in the traditional sense are no obstacles at all, but simply the things that make us special. And thanks for proving time and time again that true communication between two people goes way deeper than just the words we speak or the way we choose to hear them. If I could do one for thing for you it would be this: that I will promise to stick it out down here for as long as I possibly can, and that I will carry your message with me for anyone who will listen, however they happen to do so.

And if I have to be at least a small part of your continued life down here for just a little while, well, then you can be my ears up there. Because it might not be the way that anyone would have imagined this picture looking 29 years out, but I promise you this, dear cousin:

It will be beautiful.

With all my love and gratitude,
Piper

Be Unbroken

On the evening of June 11th, 2010, I sat munching on a three-course dinner at a four-star NYC restaurant with my mother, father, and sister. The food was wonderful and easy to swallow; it was just too bad the same couldn't be said for the mood or the conversation. My family was, to put it mildly, a little bit distressed. A couple of days earlier we had received some disheartening news from one my doctors, and I was fairly certain that we were in for at least another month or two on the waiting list for new lungs. Another month or two of keeping my life "on hold", of living with ravaged lungs, of seeing the stress and worry in my loved ones' eyes. Another month of two of gasping for breath. Another month or two of hoping for a miracle...and of praying for survival.

Um, yeah, did I mention we were just a teeny, tiny bit upset that night?

Of course, many of you know the rest of the story from that evening. You know the part about how, just as our check arrived, my phone started to ring and the tell-tale number flashed up on my caller ID. You might have heard about how we rushed out the door of the restaurant, my dad sprinting for the nearest cab, my mom already on her phone to some of our nearest and dearest. And you may even remember the pictures of all 4 of us sitting in the admissions waiting room at my hospital, proudly displaying our "new lungs" t-shirts and looking pretty stunned to be there. We were jaded from too many dry runs and near misses, and we were none of us exactly sure what to expect that evening. That we would end up "meeting" my beloved Donor Bob in the early hours of June 12th, 2010, was almost more than we would have ever dared hope.

Yes, many of you know the story because we were blessed to have so many wonderful followers out there from so many different walks of life. Then again, you might not know quite as much about that evening as you think you do. Because the part of the story that you might not have heard is how much I cried.

As soon as I got the call I ran down to the bathroom of the restaurant and locked myself inside, where I quickly turned on the sink to make some background noise. I knew my family was waiting for me outside the door, so I made it quick. I looked straight in the mirror, saw the terrified, overwhelmed, exhausted face staring back at me -- and burst into tears. Not because of what I saw there, but because I knew I would likely never see that face again. I cried, in other words, not for the miraculous blessing I was about to receive, but for the wonderful thing (and yes, my lungs were wonderful, in their own way) that I was giving up. I cried for the part of myself that I was losing.

My father recently had a discussion with a wonderful CF doctor that my family has known and trusted for years and years and years. (Note the number there: I put in three because I'm almost 30 -- yikes! Who'd have thunk that, right?) This highly trained physician and researcher mentioned to dad that, at least in his experience, most transplant patients have an emotional element to their surgery that isn't really addressed or spoken of, or at least not super often. He compared it to the PTSD often seen in people returning from conflict or war -- basically the sense of having been changed by the experience, and the crises of faith or identity that can sometimes go hand-in-hand with an important and life-altering event. I'm sure there's a more technical description for all of that (and PS, if you have one, please share it!), but for my purposes here it's enough to know that it can simply be hard, on a lot of levels.

My first conscious thought after surgery was that this was going to be difficult. It wasn't so much the physical pain that was a problem -- I expected all of that, and more -- but the strange feeling I had of suddenly being out of control. As silly as it sounds, I had an immediate sense of "missing" my old lungs. They were little brats by the end there, sure, but they were brats that I knew how to discipline, knew how to coddle, and knew how to live with. All the new medicines and machines and doctors and surroundings confused me, even after I came out of my ICU madness (and for the record I was pretty bad in there -- they really shouldn't let people with law degrees get major surgery). For a long time after the operation I had a very unsettling tendency to burst into tears at random moments. And sure, probably a fair amount of that emotion was drug-induced or pain-related, of course, but I think there was something more to it as well. Weird as it is to admit, and certainly to type and record here for the duration of this blog, I think I felt a little, well...I guess the word would be lost. People around me were celebrating, they were grateful, they were "done." They wanted me to talk about how much better I felt, and how happy I was, and in a way all of that was completely reasonable. But there was also another part of it for me. I felt like maybe there was going to be more to this whole transplant thing than simply learning how to breathe again and then just getting on with it. Or, to put it another way, I suddenly realized that it wasn't going to be all "hey, cool, new lungs, new breath, new life. Bye, mom, and have fun back in Colorado! Thanks for the prayers, everyone. See you all when I win my Nobel Prize!"

Um, yeah, not so much.

Don't get me wrong, guys. I don't want anyone to misread my message here as a major Debbie Downer moment. I am thrilled and grateful beyond my wildest dreams to have been given this chance at life with new lungs. I am firmly and completely in support of transplant, for those who think it's the right choice for them, and I am 100% certain that I made the right choice. I love and respect my doctors, trust that I am getting awesome follow-up care, and count my lucky stars daily for all the support I received (and continue to receive) from all of the beautiful people in my life. To say I am blessed would be like calling the Empire State Building "tall" -- it just doesn't do the real thing justice.

That said, I was really intrigued when my dad told me about this doctor's perspective. He knows what he's doing, and he's worked with a lot of different CF patients of various ages. His observations about stress, trauma, and transplant certainly won't hold true in every case, of course, but I think I'm ready to admit that they really did ring true for me. Despite all the wonder and the beauty and the blessings and the crazy awesome stressful happy unfuckingbelievable madness of my story, I think it's fair to say that there is a little something of me that I still think of as missing. It's maybe just something that I am learning, however slowly and however different it may end up looking, to rebuild.

And so tomorrow night my wonderful Godmother is taking me out for a small celebration, to ring in 14 months of this new(ish) existence in style and to toast the start of new things. Although I am still on IV antibiotics and still struggling with certain aspects of this process, I am also starting -- again, however slowly -- to face my own reflection, even if it looks just a tiny bit different now. And as part of that moment, we will go back to the restaurant where it all started. Or maybe where it all ended, depending on your perspective. Because I want to go back there. Because I need to find my way back, no matter how corny or dramatic it sounds. Because I am ready to move forward -- whatever that means. And because I am always, eternally and forever, beyond grateful.

For all of it.

Top (CF) Chef

Just about everyone who knows me will vouch for three major things about my personality:

1) I rarely, if ever, cook anything edible other than, say, the occasional bowl of cereal or, when I'm feeling super gourmet, some sort of random stir-fry/5th-grade-science-fair experiment hybrid involving pretty much every single ingredient that happens to be in my kitchen at that moment;

2) That the aforementioned lack of culinary skills does not in any way, shape, or form dissuade me from religiously watching just about every cooking show known to man, often DVRing the episodes and re-watching them later (as if the results of the show might have changed?), plate of take-out Chinese food in hand; and

3) That I have been, at times, known to be just a little, tiny, teensy bit competitive . . . although this one is somewhat up for debate. (And I WILL win that debate, I promise.)

All of which combined led me to literally squeal with excitement when I recently received an email from our good friends over at Abbott Pharmaceuticals. Turns out that the makers of Creon (you know, the drug that allows so many of us to eat all that yummy food in the first place) are sponsoring a new program called CFChef. And in my opinion, not a moment too soon.

CFChef is designed to help people with CF meet the intense and sometimes challenging dietary requirements of living with this disease. According to Abbott, the program (which can be found at www.Chef4CF.com) is there to serve both as an educational resource for patients and families as well as a sounding board for the sharing of information and recipes. Awesome.

So where's the fun part?

Turns out CFChef is celebrating its new launch by hosting a CF recipes contest. Now I want you all to close your eyes. Imagine your favorite Top Chef/Iron Chef/Food Network Star. Imagine s/he was cooking a meal for a CF audience and needed your help. You have 30 minutes and a mystery basket filled with dried pasta, brazil nuts, gas-station beef jerky, and ScandiShake powder (chocolate OR vanilla, just because I'm feeling generous). Your time starts...NOW!

Okay, maybe not.

But the contest DOES start now, and the rules are relatively simple. Just go to www.Chef4CF.com and enter your favorite CF recipe before Sept. 28, 2011. The top four winning recipes will be selected by a panel of experts including:

-Suzanne Michel, CF dietitian
-Boomer Esiason, Former NFL Quarterback, TV Personality, and CF Dad
-Michael Symon, Food Network "Iron Chef" (ohmigod, ohmigod, ohmigod!)
-Ali Christensen, CF Patient and "America's Got Talent" Contestant (Not to mention all-around sweetheart, as I had the honor of meeting her and her equally talented sister this year at the CFF's Volunteer Leadership Conference)

Tell me you're not super excited already. Go ahead, try and say it with a straight face.

Personally, I'm not much of a chef (and my recipe for "Piper's Special Stir-Fry Surprise" is just waaay too top secret to leak out onto the internet), but you can bet that I'll be encouraging my friends and family to enter! I'm also super excited to see (and to try!) some of the recipes that I know all my brilliant, beautiful Breathheads are going to submit. And if sharing and helping out the CF community while gaining personal glory isn't enough motivation for you, ask yourself when else in your life you're likely to have a chance to submit a recipe to a healthcare professional, a sport's star, a singer, AND AN IRON CHEF all at the same time? Yeah, that's what I thought.

Seriously though guys, this is an awesome chance to help out your fellow CFers, strut your stuff, AND have some fun in a program sponsored by one of the CFF's major corporate partners. What more could you honestly ask for?

So here's to community, cooking, creativity, calories, and, above all, to curing CF. Happy cooking, y'all!

**Blogger Challenge: Personal Disease Perspectives**

I recently got asked a question by a CFer who was worried about her upcoming evaluation for lung transplant. She wrote me a very thoughtful and articulate email about the subject in which she noted that she did her vest 2-3 times every single day, took every enzyme and pill exactly as prescribed, and worked out 3-4 days a week on average despite her steadily dropping lung function and ever more frequent lung infections. She also noted that she sees her doctor at least monthly and goes on IVs every 3 weeks or so, during which time she carefully schedules her infusions to be exactly 8 hours apart and makes sure to follow any additional treatment instructions (such as extra rest or spacing out her calcium from her cipro) that her doctor might recommend. She follows a detailed dietary supplement plan worked out in consultation with her nutritionist and, in her own words, she "tries very hard not to let [her] mind make excuses for any lapses in [her] responsibilities to [her] body." She told me all of this, and then she posed a simple question: "Should I be worried that the lung transplant team at my hospital will decide I'm not a good enough candidate for lung transplant?"

Wow.

Faced with this sort of question, my first reaction was exactly what I hope all of yours was too, meaning that I basically just sat there staring at the email in shock and then started to re-read it to figure out what part of the puzzle I must be missing. "Good enough candidate" was her exact term, and for the life of me I couldn't understand why she was questioning herself like that. After all, the entire message leading up to that point was basically a textbook description of the perfect patient, someone both mentally and physically committed to fighting her disease and maximizing her chances for survival even in the face of some pretty tough obstacles. I thought surely she must have some other underlying health issue or random skeleton in her closet (did she smoke? was she secretly selling her antibiotics on the black market?) that she wasn't telling me about. Otherwise why would she possibly be worried that her transplant team would reject her? What would drive a diligent, motivated, and obviously smart young woman into a crises of confidence so severe that she was, essentially, wondering whether a panel of doctors would deem her "good enough" for a life-saving procedure?

So I asked her.

Turns out this young lady was worried not because of her compliance record or her past medical history or anything else having to do with her behavior either as a person or as a patient. She was worried precisely because, as she put it, "I keep reading stories about how people saved themselves through exercise, compliance, and changing behavior. I feel like I've tried everything, but my FEV1 is in the toilet and it keeps sinking lower even when I do everything I'm supposed to do. How do I know the doctors even believe me at this point that I'm trying my hardest to make things better? How do I even know I'm not missing something?"

Okay, I'm gonna say it again: wow.

The moment I read those words, I started crying. I feel like this young woman summed up perfectly the frustration, self-doubt, and fear that a lot of CFers unfortunately feel when they suddenly start to lose control over their health. CF is a crazy disease in that it is controllable, to a point, through proactive care, self-responsibility, and treatment. But that whole "to a point" caveat is where things start to get tricky, because for some people the "point" seems to be around 90% control, whereas for others it seems to hover much lower. We're all pretty used to hearing that each CF case is different and that genetics, compliance, environment, and lots of other factors all play into our personal progression with the disease. But what about the fact that even two people with the exact same mutations, same FEV1, same bacteria, and same exercise program can still experience different results? How do we account for that in a medical system that, understandably enough, has to quantify things like Lung Allocation Scores and the risk of non-compliance after transplant based on general assumptions like "people with a 45% FEV1 are less sick than people with 29%" or "these treatments work, therefore patients who take them appropriately and as directed should see improvement"?

I think this email also struck a personal chord with me because of my own recent experience post-transplant. It's weird, I feel like I've been relatively healthy, but I'm also not blind: I can see that most people at my center don't seem to spend nearly as much time on IVs or fighting weirdly yo-yo like PFTs as I do. And if I'm 100% honest, hand on heart, I'd also have to admit that I've had a few "what the heck am I doing wrong?!" moments -- times when I have literally freaked out at myself for the perceived "sin" of getting another infection, or having a low prograf level, or not blowing hard enough during the testing. I actually had one moment when a PFT tech asked me if I understood the proper technique for the test and I very nearly forgot that I've had close to 30 years experience with this stuff before I stammered out a meek little "um, I'm pretty sure I know how to do it."

For those of us who might be dubbed "crazy control freaks" by others (I personally prefer the term "highly motivated, results-oriented individuals who might admittedly be somewhat crazy"), accepting that there are parts of our bodies that might not be 100% cooperative is challenging, to say the least. We have faith in the power of individual action, and when it fails we feel judged and inadequate. For others who are good at grasping the uncertainty of life with a progressive, chronic illness, the challenge might instead lie in keeping a sense of personal responsibility in the face of what seems like an invincible enemy. There's judgment there also (probably as much by the control group as anything), as well as a sense of powerlessness. Oddly enough, both of these approaches can eventually lead to the same point: a deep-set fear that our disease is in charge, and that nothing we do will ever be "good enough" to stop it. In the worst case scenario, both approaches might even cause actual non-compliance, with patients adopting the mindset that nothing we can do as individuals actually matters when it comes to fighting CF. (And yes, I know this from personal experience. I spent a good part of my teenage years convinced that if I couldn't fully control every single aspect of my CF then I was failing and should more or less just stop trying. I'm embarrassed to admit how long it took me to snap out of that trap.)

This is somewhat of an oversimplification, of course. As lifelong patients, most of us will fall into both camps at some point or another, switching sides seamlessly as we get older, or sicker, or go through different life phases -- or even adopting different views for different issues (those who might be hardcore when it comes to doing treatments, for example, but nonchalant about the power of exercise). It's more of a spectrum than a true dichotomy, in that sense, with a whole lot of middle ground in between the two extremes.

So since I couldn't really answer the question (well, sort of -- I did write that I would personally go down there and tell off her transplant team if they dared decide that she isn't "good enough" for new lungs), I've decided to put it to a panel of experts in an official "Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition." Here are the rules of the game:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Much love, light, and healthy debate to all of you, beautiful people.

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.

The More Things Change...

. . . the more they stay just enough the same to drive you crazy.

December, 2009: Picture of dressing from port-a-cath #2.


July, 2011: Picture of dressing from port-a-cath #3 (in the exact same place!).


Happy belated 4th of July, beautiful people! As you can see, I've been a little busy, but I promise to be back soon.

xoxo,
Piper