Friday, September 24, 2010

Just Do It: Cure Edition

So I'm always going on and on around here about my awesome family, and sometimes I wonder if you all get sick of it. I mean, be honest, here. Are you tired of coming onto my blog all geared up to here (yet another) story about the life and times of a slightly crazy transplant patient and her very high-strung puppy, only to find yourself somewhat disappointed by the fact that all I ever seem to talk about anymore is my fabulously helpful mother, my fun-loving father, or my pretty much ridiculously talented sister? Yeah, I kind of figured as much. But fear not, lovely people, because I 100% promise to you all that this particular post that you are about to read will not be in any way shape or form about my fabulous family. No, really, I mean it this time.

It's gonna be about my equally fabulous friends.

Shocker. Bet y'all didn't see that one coming from a mile away, did you?

But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?

(Psst...he's the one on the right.)

Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...

So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.

Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.

But, of course, none of you need me to tell you that, right?

PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.

1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.

2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.

3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!

Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.

Monday, September 20, 2010

New Lung Resolutions: Post-Transplant Edition

My CF and blogger friend Amy recently posted her own blog in response to one of my blogs, in which she aks pre-transplant CFers to consider what they would do with new lungs. Awesome idea, and I totally encourage you all to go over there, check it out, and get in on the conversation. You can either leave it there in her comments section or just leave a link to your blog in there and then write your own, larger piece on the subject.

The fact of the matter is that lungs are a precious gift. You know that, I know that, the donor families know that (which is what allows them to make such a selfless decision during a difficult time), the doctors know that...heck, we all know it. But the reason that lungs are so precious is that they allow you to LIVE. They allow you to be you -- and maybe even a new version of yourself, with sides you never even knew you had, because of all the energy that is no longer devoted just to the simple act of breathing. There's a reason that the button on the sidebar of my blog says Donate LIFE. And LIFE, as we all know, is subjective. It means different things to different people.

So as a response to Amy's post in response to my post (whew! Did you follow that?) I decided to dig through some of my old posts to see what I envisioned for life with new lungs back before I had them. And I found this list (entire post can be found here):

  • Go running in Central Park: Not yet. Actually, I haven't done much running at all, unless you count short jogs down the street. This is a little frustrating to me, as I think I believed that new lungs = breathing = running. Unfortunately I forgot the other side of this equation, which is that new lungs = surgery = scars = pain = not-so-much running. Whoops. Still, I have WALKED in several parks, and loved it -- and I hope that soon my scars will heal enough for some longer running spurts. Probably just in time for winter, no doubt.
  • Buy a beautiful dress, go dancing, and stay out on the floor as long as I want: Hmm...this is an interesting one. Don't remember why I thought this was important, but I have, in fact, bought a beautiful dress since transplant. Even better, I bought a beautiful dress from the fashion line designed by my sister (SUNO). Love it. And while I have yet to go dancing in a club (germ control in full effect still), I have danced around my apartment -- a lot -- without getting out of breath. It is every bit as wonderful as I thought it would be.
  • Spend a day volunteering for a cause that is not at all CF-related: Okay, this one I like, if for no other reason than it makes me seem less materialistic than the dress one (oh yeah, I'm definitely that vain, believe me). Volunteering used to be a huge part of my life in college, and though I haven't done it yet with new lungs, I'm super excited about the prospect. Considering the generosity of my donor and his family, I have no doubt that volunteering will come naturally to my lovely new lungs.
  • Play with my puppy more (I mean really, really play): Check, check, and more check. My puppy is actually passed out on the floor as we speak after a rousing game of fetch with his favorite squeaky tennis ball. I'm not sure Sampson can handle me with new lungs, but he's having fun trying so far.
  • Go to a museum: I visited an exhibit with my mom and a friend not all that long after my surgery. I was still tired and a little sore at that point, but I do remember enjoying the sensation of walking around, not having to find a bench every few steps, and still having the energy left over to walk to lunch afterward. Museums are definitely a whole new world post-transplant. Did you know there's actually ART in those things? Wow.
  • Continue to journal/write/paint/express myself: The interesting thing is I think I've gotten WORSE at these things in the past 3 months, as is probably reflected in this blog. For starters, writing and being creative takes time, and recently I've had so much going on that it's honestly difficult to sit down and put in the hours necessary to do a good job. Beyond that, this sort of expression also requires concentration, something that seems all too rare these days thanks to the one-two punch of prograf and prednisone. The first of these reasons is a good thing; the second, not so much. But I'm also happy to report that the "prograf brain" and "pred mania" both seem to be waning. Fingers crossed anyway.
  • Take a tai chi class: Since transplant I have taken a writing class (online), several gyrotonic classes, and am signed up to start a French class soon. Granted, none of these is tai chi. So sue me.
  • Continue to meditate: Um, did I mention my good friends prograf and prednisone? Yeah, they're not so hot on meditation, apparently. Unfortunately for them, I just this week got back into the swing of things and am even planning to do a two-day meditation workshop in November. Take that, stupid annoying drug side effects.
  • Dance in the rain -- literally: Well, I got caught in the rain while taking a nice, long, post-transplant walk. Does that count? It was a lot of rain, I promise.
  • Watch a sunset and a sunrise (need not be the same day): I've watched several sunsets and one set of fireworks on the Hudson River, so I'm gonna call this one good for now. I still plan to watch more, obviously.
  • Find a way to do something to say thank you to my family for everything they've done for me this year: Any ideas? Anyone?? Please?
  • Be grateful. Be patient. Be humble.: Grateful...check. Patient...Um, working on it. Humble...Well, I think I do a really good job on this one, if I do say so myself. Obviously.
  • Practice compassion for myself and others at every chance possible: Clearly this is an ongoing thing.
There are also lots of more immediate, everyday activities that are basically a whole new experience with my new lungs. Birthday parties for friends, dinners out, exploring the city, walking, riding my bike, shopping, breathing, laughing, and even just sitting watching TV while not doing treatments. Not to mention the fact that I'm honestly never really tired -- or at least not like before, anyway. I go to bed at night and wake up in the morning feeling rested. I feel energetic. I even feel hungry right when I wake up -- no waking up coughing, doing the VEST, and then waiting 30 mins to an hour for my stomach to settle enough to eat. I just eat. You know, like a so-called "normal" person. Weird.

The funny thing about all of this, of course, is that I'm still not really "normal" by most people's standards. I spend a whole lot of time up at the hospital or getting blood labs or counting out pills or having bronchs or refilling prescriptions or taking my vital signs. I still have limited lung function (although it is climbing!). I'm still underweight and I take enzymes whenever I eat like many other CFers. I'm immuno-suppressed and vulnerable to infection. I've dealt with rejection and IV steroids. I have recently acquired CFRD and continue to struggle with insulin. And at the end of the day, I'm still just 3 months out of a double-lung transplant. But all these things, which seemed so daunting with my CF lungs or even during the period directly after transplant, somehow just don't seem all that huge anymore. They're still there, and I'm not going to ignore or gloss over them, but I find myself spending less and less time actually focusing on my health -- and more and more time focusing on other things, whether that means all the activities I dreamed of pre-transplant, or just the simple stuff I'm lucky enough to enjoy every single day.

So that, beautiful people, is my updated version of my "new lung resolutions" -- written 9 months (and seemingly a lifetime) after the original post. It may not be perfect (I'm only human, after all), but it's definitely close enough for me. And it fits my definition of LIFE to a "T."

Thursday, September 16, 2010

Riddle Me This

Okay, beautiful people, here's a riddle for your Thursday night pleasure. What has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis (warning: the preceding figure is just an estimate -- actual number of doctors visited may vary), give or take two more months until her 29th birthday, and two bedrooms in her current apartment -- one of which is now distinctly empty?

Give up?

Yes, you read that last part right. As of right now there is only one person (and one super fat shorkie) living in my 18th story abode. And yesterday, after 15 months of urban not-so-zen, my mother/nurse/roommate/appointment scheduler/pill manager/dog walker/friend packed up her (many) suitcases and made her way out of New York City...and back to Colorado.

Back to her husband (aka, my father), her job, her dogs, her house, her garden, her friends, her favorite coffee shops and restaurants, and, well, her life.

And I, of course, already miss her like crazy. Sampson spent a good part of yesterday evening sitting by the door in anticipation of his "grandma's" return. When being patient didn't work, he resorted to some very un-dignified barking. When that also failed, he heaved a huge sigh and flopped down despondently on the couch. My thoughts exactly, Sammybear.

On Tuesday my mom came with me to a routine transplant clinic appt just to see my doctor for the final time before her big move. Honestly, we couldn't have asked for a better visit overall. Things are going great with my new lungs. My numbers are great and, far more importantly, I feel as though I could take on the world. My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it.

There is so much to do in the future. So much hope and promise, and so many exciting options. Without sounding too pollyanna about it all, I'm really looking forward to trying out some new things and flexing my wings a little. The other day it dawned on me that people all too rarely get the sudden chance to reinvent themselves. Life is pretty fast paced most of the time, and there's always a good reason to stick with the status quo. Which, of course, makes a lot of sense from a practical standpoint, but how lucky am I to have a natural break to take stock of myself right now?

Yeah, I said it: I'm lucky. I went there.

Honestly, I'm a big fan of keeping things in perspective. (Um, okay, fine: most of the time. I'm sure I have family members out there who just fell off their chairs in shock reading that sentence.) I'm not about to claim that being born with cystic fibrosis is lucky. Needing a lung transplant in your 20s is decidedly unlucky, in fact. As is being "disabled" or having to swallow ridiculous amounts of drugs to kill your immune system everyday. These things kind of suck, no doubt about it. End of story.

Except that it's not really the end. Because as cynical as I am some of the time, I would be really hard-pressed to try and claim that I'm not lucky -- or at least it would be hard to do that while keeping a straight face. As a law school graduate, I just can't ignore the hardcore evidence.

I was born with an unlucky disease, but I have been lucky enough to meet some awesome people as a result.

I might have been unlucky to need new lungs, but I was lucky enough to get them. So, so lucky.

I am unlucky in the sense that I'm a hardcore veteran of the medical system, and lucky enough to have had some of the best doctors I could ever imagine.

I am currently in the unlucky position of trying to recover from a super intense surgery in which they swapped out some of my most vital organs for those of a stranger (um, wow, right?), but that very fact also means that I find myself with a lot of time for reflection, planning, personal growth, and education. That, my friends, is pretty darn lucky, even if I do say so myself.

And I mean, sure, these are only silver linings in what some would consider a very cloudy sky, but that doesn't make them any less precious or their shine any less brilliant. Which means that even as I was (and will be for a long time) very sad in one sense to see my mom get in that cab to the airport, I was also unbelievably grateful. Not just for everything she gave me when she was here, but also for her grace and wisdom in knowing how to wave goodbye and get on that plane. It was a lesson by example that I hope I can carry with me forever -- how to care for someone with great compassion and love, and then to step back to allow that person to care for herself.

So what has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis, give or take two more months until her 29th birthday, two bedrooms in her current apartment -- one of which is now distinctly empty -- and is quite simply one of the luckiest girls in the entire world?

Well, I think we all know the answer to that one. I love you, mom.

Saturday, September 4, 2010

On Mistakes and Magic Markers

When I was very young -- like, say, four or five years old -- my mother decided to have a very special chair reupholstered and placed in my bedroom. The reason this chair was special is that it had been my mother's childhood chair -- a beautiful mini-armchair that my mother chose to cover in bright pastel stripes appropriate for her little girl. I still remember the chair pretty vividly even now, which is a testament to how much I liked that single piece of furniture since the rest of my bedroom has grown a bit hazy over time.

On the day the newly covered chair was delivered to our house, my parents hosted a small dinner party. At some point during the evening I was alone in my room, either because I had been told to play quietly or possibly because I was supposed to be sleeping. Either way, I was alone. With the chair. And apparently also with a contraband black permanent marker, most likely filched from the kitchen counter with a stealth that would have made a professional burglar jealous. Cue the scary music because I think we all know what happened next.

My father eventually came to check on his sleeping angel, as parents tend to do. And when he found me I was apparently in the throes of artistic inspiration -- gleefully covering my new chair with dark blots in random patterns a la some deranged Jackson Pollack, or perhaps a paint-by-numbers gone horribly, horribly wrong. In either case, my mother was summoned to the room to inspect my masterpiece, whereupon she immediately burst into tears that, surprisingly enough, did not appear to be tears of joy at my brilliance. And I believe that was when my father turned to me, a stern look on his face, and asked me a version of the same question that parents have been asking their kids ever since Adam and Eve looked around and saw that the garden was a complete pigsty:

"Why, Piper? Why would you color all over your mother's chair with black marker?"

And tiny me, without hesitation, answered simply:

"Because I prefer darker colors."

I've been told this story about a million times. According to my mother, this was the point at which my father burst out laughing and I managed to get off with virtually no punishment, despite the fact that the chair had to be sent back to the shop for another reupholstering. In my dad's version, this was the moment at which he knew I would one day go to law school. My sister uses this story to prove that her childhood antics (which once included signing her name in paint all over the house and trying to blame the sleeping infant me for the damage) were nothing compared to mine. And my godmother likes to tell the story just because it makes her smile to think of my sister and me at that age. But whatever the motive, it's definitely become part of the Beatty family folklore.

My interpretation of this story is a little different. I see in it two things: 1) the fact that I tend to think things through before I do them (because I doubt my young self would have been able to come up with such a logical excuse on the fly had it not been my true motivation), and 2) just because something makes sense in my head, that doesn't always make it the right thing to do.

It's just too bad I haven't always been able to channel this lesson in my own life, right?

I've noticed lately that post-transplant living is nothing so much as one great big balancing act. The wire is wobbly and the stakes are high -- a single misstep, however good the intentions behind the act, could spell disaster. At the same time, perfection is pretty much impossible. The job itself is complicated. Mistakes will be made. And while standing straight and still in the middle of the wire might be the safest approach in terms of not falling, it will also mean that you never perform the trick you set out to master. That ultimate trick of living your life with grace, gratitude, and maybe even a little bit of style if you're lucky.

There are a few events that sparked this realization, but honestly I don't want to get into them here. Because the events themselves, although they seemed like huge deals to me at the time, were really just a drop in the bucket. The bigger issue, for me at least, is the reality that I have to find a way to live with these things -- with immuno-suppression and side effects and awkward conversations and, yes, mistakes. Like it or not, these are all part of my life now. They're here, and they're not going anywhere anytime soon, if ever. And it's 100% up to me to learn how to identify risks, how to be wary of the danger without standing still altogether, and how to both accept the mistakes I do make and correct them in the future. I have to be both my harshest critic and able to forgive myself in order to move on. And that, my friends, isn't always easy.

So I guess I find myself back in front of the chair, and once again holding that proverbial marker in my hand. Only this time, instead of just asking what I want, I have to ask what is best for all involved: who will I hurt, what will this cost me and my family, is there perhaps someone more knowledgeable on the subject of furniture upholstery that I should consult before making this decision, will I be sad if things don't turn out the way that I expect, can the damage be undone? These are just a few of the questions I want to ask my tiny childhood self. And at the same time, I hope I can maintain the courage to still nourish that inner artist (however misguided she might have been -- I mean, seriously, a black sharpie??) and give her space to continue living and expressing and creating and thinking and playing. Just, you know, preferably on a more appropriate canvas.

So thanks to God, my doctors, and my donor for the chance to make even more mistakes in my life. And a long-overdue thanks to my amazing mom for the beautiful chair.