Sunday, January 24, 2010

Personal Health Update

Well, back on IVs starting tomorrow. I'm not feeling absolutely terrible, just coughy and tired and run-down. In other words, bad enough to want to feel better, and to know that I can't get there by myself. So I'm calling in some help, and hopefully sometime soon I can get back to feeling like this:

Yeah, yeah, I know. NO ONE looks at that photo and thinks "aww, doesn't that person look adorable!" It's okay, I'm used to playing second fiddle to this little guy.

Anyway, just wanted to give the brief health update in case I'm not around as much in the coming weeks. Assuming the antibiotics don't entirely kill what little creativity and/or brain power I have left I'll definitely try and make at least a few posts. In the meantime I'm going to focus on getting healthy and staying as in shape as possible until those new lungs of mine decide to join the party.

And I'm going to go take a really long, hot, needle-free shower.

On a more personal note, I have some amazing cousins who live in MN (um, sorry about the Vikings, Glo. If it's any consolation, I guess both our home teams lost today.). Last year Glo and her son Isaac climbed stairs to help find a cure for CF, and this year the whole family is getting in on the act. So much love and thanks in advance to Glo, Steve, Isaac, Sam, Lola, and Caleb. I'm sure I don't have to tell a blog full of CF readers how impressive it is that my family is willing to climb stairs to help make CF stand for "Cure Found." I mean seriously, talk about dedication! It makes me feel unbelievably loved and supported to know that even when this disease can feel so overwhelming, there are just amazing people out there standing with us in this fight. To the Beatty-Ruff family, and to anyone who has ever donated or walked or climbed or skiied for CF -- you are my personal heroes. (Even more so if you're also an organ donor!!)

Much love and goodnight, beautiful people.

Thursday, January 21, 2010

A Little Bit of Perspective

If you've been following this blog at all lately, you've probably caught on by now that I am slightly obsessed with gyrotonics. Okay, maybe make that "not-so-slightly", because let's face it, I find that if you're going to obsess, you might as well take it all the way. And all the way for me lately has meant 3 sessions a week, for an hour each time, with a private trainer. I love the excuse this gives me to get out of the house even when I don't feel awesome. I love the cozy feel of the studio -- all warm and lovely and filled with people moving and flexing and playing on the towers or the jumping board or the mats on the floor. I love the movements, and the empowerment, and the fact that I can actually feel myself getting stronger and more flexible from week to week. I love all of it.

Except, of course, for the stretching.

Let me explain: each gyrotonics session begins and ends with some stretches and movements designed to open up your body and warm your muscles. Sounds pretty standard, right? Yeah, I thought so too, until I experienced it for myself. I swear sometimes it feels as though the world's gyrotonics instructors huddled together in some dark room one night and hatched a plot to torture unsuspecting fools like me through the use of roller balls and resistance bands. And sure, I know somewhere deep down in my heart of hearts that this is (*gasp*) good for my body, but in the moment it tends to feel more like one of those "enhanced interrogation techniques" we've all read about in the news. Seriously, I'd sing like a canary if it meant that I never again had to endure the pain involved in "rolling out" my thighs.

I distinctly remember one session early on in my gyro career when I was literally gasping in pain by the final stretching period. My instructor was carefully guiding my movements, ensuring that I wouldn't overextend and hurt myself, but also pushing me to break through that wall of comfort, basically forcing me to ask my muscles to go a little further, and open just a little more than what felt easy. And the result was pain. Pure, unadulterated, evil pain. So I lay there, on my back with one leg extended skyward, my muscles shaking with effort and my body clenched against the suffering, when my instructor looked down at me and smiled. I thought for sure she was going to release me and let me go slink off into a corner to lick my wounds, because she could obviously see that I was in distress, but she didn't. Instead she just looked at me calmly for a second and said simply "you need to go there," as she guided my leg into an even more excruciating stretch. Just five little words to tell me how much my body needed this, and I believed her. Kind of.

So needless to say my general attitude since then has been to go to gyro, get through the first part, really enjoy the main bulk of the hour, and then endure the painful stretching and opening at the end with resolute and resigned silence. That's what "you need to go there" meant for me, after all: do and get through it, and who cares if you enjoy the process, right?

Well, maybe. The other day, as I was slipping out of my shoes and coat, I took a second to wonder why I was dreading this stretching part so much. And immediately the words "you need to go there" popped back into my mind, because, to be honest, they never really left it in the first place. So there I was, coat half off and contemplating what it means for the body to really "need" something, and then, all of the sudden and without really meaning to, I made a personal decision that the stretching for that day simply would not hurt. My decision was based on the logic that if my body needed to stretch, then doing so was not harmful; in fact, quite the opposite. Pain is the body's way of telling you when you are doing something wrong, like sticking your hand into a fire, for example. Holding your hand in a flame is supposed to be hard -- your body makes it hard on purpose -- because it isn't a particularly good thing to do. Stretching, on the other hand, is good for you. Exercise is good for you. There may be sensations that accompany these actions, but those sensations aren't really pain: they are the feelings of muscle growing, or opening out to greater flexibility, or connecting with other muscles to form a stronger, more balanced movement. I wasn't sure changing the label would change the experience, but I was bound and determined to try.

So are you ready for a miracle?

Well, don't be. I've had three sessions since that day and the stretching still isn't easy or comfortable, necessarily. But it honestly isn't painful somehow. On the first day I tried out my new perspective, I noticed that I was breathing into the stretches more deeply, accepting on some level that these were good and that I really did "need to go there." I don't dread these parts of the session anymore either, in fact I find that I kind of like them in a weird way because I see them as a vital part of the workout -- not just something to get through and get over with. It's not so much that anything about the stretches themselves has changed; it's just that I'm opening my mind now instead of just my muscles and joints. And that seems to be making a difference on some level.

I ended my session today with the same stretches I used to hate, and found that I barely broke stride or focus going into the movements that just a week or so ago had me gritting my teeth and clenching my fists. I concentrated on my breathing, exhaling into the motions, and just let it be . . . well, not easy, but maybe "right" is the word I'm looking for. I let it be right -- for me, for my body, and for the moment.

So I lay there tonight, my leg extended above and my muscles still shaking with effort, and my gyrotonics instructor looked down at my relaxed fists and easy breathing. She smiled, and I thought for sure she was going to let me go this time, and then she simply said "yes, right."

And pushed me just a little bit further.

Wednesday, January 20, 2010

Stream of Consciousness Post #1

it's 2:30 in the morning and still no call tonight. or this morning. i've managed to convince myself that the call will come at 2 am, probably because someone i know had a dry run around that time in the morning. but i had two dry runs and they both came in the afternoon. does that mean i count other people's experiences as more real than my own? and what is real anyway, when you're waiting, suspended, not moving, in line? take a number and have a seat, oxygen machine is to your left and bathrooms are down the hall -- transplant is the ultimate waiting room.

i'm not even sure what i'm waiting for honestly. lungs, of course, but what does that mean? what will they feel like inside my body? will i miss my old lungs? feel like a part of me is lost? will the new lungs miss their old body as well? will they be homesick inside the foreign country of my chest, suspended from my airways, breathing in my oxygen, surrounded by cells that would kill them if they weren't so high on immuno-suppressants? it doesn't exactly sound like my idea of a fun vacation, much less a permanent move. but they'll like their new home, like me, surely -- they have to. come on, everybody likes me, right? just remember to trust and to be grateful. second chance at life. second chance at breathing. first chance with healthy lungs. last chance . . . ?

so many "lasts" in my life right now. last time my old lungs will ever leave the united states. last time i was home in colorado, among the mountains with the lungs that were born there. last day at work. last time i'm gonna cry about any of this, i promise. last time i'm gonna ask how long this waiting can possibly last. probably not the last time i'm gonna have to remind myself that i'm trying.

trying to live for today and plan for tomorrow. trying to ignore the hurt and worry in everyone's voices, the whispered conversations on the phone. trying to pretend like i understand everything, that i get what's happening to me and why. trying to just live and laugh and love and be with my puppy and keep up with my friends and not ruin my relationships because sometimes i just don't have the energy to respond to all those emails or the phone calls or even the voicemails and i'm sorry, i'm sorry, i'm so very, very sorry. trying to be upbeat and optimistic and trying not to let anything get me down, then trying to be kind to myself and really feel my emotions, even the negative ones. trying to breathe. trying to breathe. trying to just. fucking. breathe. already.

i just want the phone to ring. or not. maybe not. not yet, not tonight. but i do, i know i do. i'm ready for this, i need this. i'm just scared. everyone gets scared, they told me that. it's normal. i'm normal. except for the ways that i'm not, of course, which are really the most important things right now. transplant isn't normal. being 28 and being on the lung transplant list is not normal. but it's normal for us, normal in our world. i fit right in among the abnormal people, anyway.

it's nice to have a place.

2:53 now. 53 minutes from when i should have gotten the call and time to say goodnight.
goodnight CF, goodnight blog.
goodnight new york and goodnight dog.
goodnight treatments and O2.
goodnight, goodnight to all of you.

Friday, January 15, 2010

Couch Confessions

Picture, if you will dear readers, a quiet evening at home in a cozy, downtown New York apartment. A cup of tea, maybe, and the faint scent of a home-cooked dinner still lingering in the air. Imagine a young woman, sleepily lounging on the sofa, a book open in her lap and a contented shorkie puppy nuzzled close to her curled up legs, as nearby her mother sits working the New York Times crossword. Enchanted by this comfortable scene and the knowledge that his favorite people are close at hand (er, make that paw), the shorkie lifts his muppet-like head and gives the puppy equivalent of a smile. He resettles himself, laying his head carefully across the young woman's feet, and gives a deep, long, and rather loud sigh . . .

. . . at which point he is promptly kicked off the couch.

Okay, look, I know what you're thinking. This is bad. I mean seriously, what kind of dog owner kicks her sweet, adorable, loving puppy off of the couch for something as innocent as a sigh? Surely there aren't actually people out there cruel enough to pull a stunt like that, and if there are then such people are most likely out lurking in dark alleys and searching for small kittens to torture, not sitting at home drinking chamomile tea and reading David Sedaris. (Actually, on second thought, such people probably do read David Sedaris, most likely in unhealthily large quantities. But I'm sure they do it in far less idyllic settings.) In short, I'm sure most of you find the idea of interrupting a dog's sleep and forcing him from his comfy nest because of a simple sigh to be a pretty disgusting turn of events, as well you should. And I assure you, it was.

But in my defense, I happen to have a very low couch. And I didn't really so much kick him off as I did nudge him to the edge with my foot, at which point, sensing he was no longer welcome, Sampson jumped off of his own volition. He certainly wasn't hurt, and he frankly didn't seem all that sad. In fact, he seemed angry, and for good reason. He favored me with rather scornful look (punctuated by a derisive snort most often reserved for the rare occasions when he finds his water bowl empty or is denied a treat before bedtime -- universal shorkie code for "you should be ashamed of yourself"), and promptly stalked off to greener pastures (i.e., the warm spot near my window heaters). I, on the other hand, was left on the couch, fully aware of the ridiculousness of my actions and forced, at last, to face what has become an undeniable, if slightly disturbing, truth:

I have lung envy.

Okay, if I'm honest, I'd have to admit that this isn't really a new development. For years I have watched with awe as my friends performed simple, everyday actions like laughing, climbing stairs, yawning, and yes, sighing with what seemed to me to be an almost ridiculous lack of effort. "Is laughing even fun when you get to do it without thinking?" I wondered, marveling at the force of their eruptions and waiting in vain for the coughing fit I felt sure they would eventually experience. "Where's the sense of triumph?" I asked again, as a friend blew out all 26 flaming candles on her cake without so much as a hint of exertion. "Surely these people are missing the true meaning of climbing this hill," I consoled myself through gritted teeth as the rest of the group tromped ahead to the concert venue, assuring me that they would save seats as they gallantly pulled the heavy picnic basket out of my grasp as though it were nothing. And so I continued up the steep incline, slowly making my way toward my friends' fading voices, periodically stopping to appreciate the beautiful Colorado mountains in the distance and the lovely wild flowers -- before I was forced to spit among their blooms. True meaning, indeed.

It's only been recently, though, that I've actually found myself jealous of other people's lungs. The other day, for example, I caught myself staring at a young child who was throwing a tantrum. Not just looking over with a shake of my head and a sympathetic glance at the exhausted mother, mind you, but full-on, open-mouthed staring for a good minute or so. This was not because I disapproved of the child's behavior; it was the sheer intensity of his screams and wails that caught my attention. Because seriously, how does a boy of five, who probably weighs 50 pounds soaking wet, manage to sustain a perfect exhalation for well over 30 seconds? And so I stood, eyes wide in sheer admiration for this behaviorally challenged but perfectly healthy little boy, until the faint hiss of my O2 tank brought me back to reality.

Please don't get me wrong. I'm obviously not saying that I want everyone else to have lung disease, too. I would, of course, prefer that nobody have lung disease, even if it means the world will have to put up with a few more wailing toddlers (or, worse yet, wailing adults, because I have to admit that I've been to a few karaoke bars where, after an hour or two, the idea of widespread lung damage doesn't seem like such a horrible thing). And most of the time I'm able to keep my envy in check, at least to the point where I can appreciate the long sighs and giggles of others and hope that one day soon I can join in the chorus. Without coughing, of course.

In the meantime, though, I guess I owe my puppy (and his beautiful, healthy lungs) an apology. Don't worry -- I made it up to him with an extra long belly rub, during which he decided to press his luck and let out several sighs and snorts of varying intensity. He even punctuated his performance by sneezing on my hand, which I guess he thought was a fitting revenge for earlier events. But I took it all with good humor, and held tight to an image of Sammy and I together again on the couch, sighing in perfect unison as we contemplate the beauty of a perfect New York evening with perfect lungs.

Thursday, January 14, 2010

CF and Transplant Update

So I saw my CF doctor today, and my transplant doctor, who thankfully practices in the same building just a few floors up. It was 12:10 when I walked in the building, and 3:00 when I walked out. Not too shabby, considering I did PFTs, vitals, and saw 2 doctors, my CF nurse, and a transplant coordinator in that period. Like a fool I went in without having eaten much though, so by the end of it I was basically ready to rob a McDonalds for some of their salt packets. Needless to say that didn't happen, and we went out for Mexican food* instead.

*There are restaurants in New York City that sell food they claim is "Mexican." In rare cases, they're right, and the food is authentically what one might find in Mexico. These restaurants tend to be small, dirty, and really, really good -- they are also most often found above 100th St. The vast majority of "Mexican" restaurants in this city, however, are some bizarre form of New York cuisine meets sub-par Tex-Mex, but I use that latter term loosely. These restaurants tend to be larger and overpriced, and run the gamut from really fancy to really ridiculous. No one from Colorado, or Texas, or any state West of the Mississippi, would consider these places "Mexican" restaurants, and it's taken me close to 6 years to stop being personally offended by their claims. I mean really, people, I know what a good taco tastes like, and it definitely doesn't involve ground up bagel and hot dog meat in a corn shell, or whatever it is these places are serving. And to any NY readers, I'm very sorry to be the one to tell you this, but you've been totally duped.

Okay, so anyway, before the "Mexican" food, I had the appointments, both of which were generally positive. I saw my CF doctor and blew PFTs without any big surprises, aside from the fact that she asked about this blog, which kind of threw me for a loop. I'm still coughing so we'll see what comes next on the IV front, but everyone's pretty much in agreement that I need a break for a little while. There is some talk of a "2 weeks on, 2 weeks off" sort of regimen from here on out, so I think we're going to play it by ear and just do what we have to do.

She called my port beautiful, and I have to say I'm becoming pretty attached to the little thing myself. It's different from the arm port, which I treated for all intents and purposes like a PICC when it came to showering when accessed, etc, but I'm getting used to it. And it's a whole lot easier than those ridiculous peripherals, no question. I frankly think my veins were plotting a complete mutiny in the not-so-distant future if I didn't shape up and start paying attention to their needs, so I'm definitely not complaining about the new port. I was running out of creative names for all my port/PICC/peripheral drama anyway.

On a very random sidenote, I asked my CF doctor if I would be able to see my lungs (a la the lucky folks at Stanford) because, believe it or not, the topic actually came up. She wasn't sure, but she said at the very least that she would take a picture of them for me. I don't know why this excites me so much, but I have to admit that it does. I guess it's just that they've been in my body for 28 years, and I've kind of put them through hell in all honesty (then again, fair's fair -- they weren't always so nice to me either), so I'd at least like to say goodbye somehow. Even if it's just a picture . . . I feel like I just owe it to myself to see what they (and I) went through with this disease.

Then came the transplant appointment, which was anti-climactic unless you count seeing a slide-by-slide CT scan of your lungs as a good time. I did learn some interesting facts about my upper-left lobe and why I might have such constant, recurring infections, though. I actually feel better when I hear all that sort of information, believe it or not, because 1) it just generally makes me feel more comfortable with the steps I have to take to correct the problem, and 2) it keeps me from beating up on myself for being unable to stay healthy. It's weird -- when I hear about other CFers who are struggling with infections, I never think "oh, they must be doing something wrong," but when it's my lungs I tend to be a little harsher. I guess my mind is trained to find out the cause behind results and to look for logical answers, so when I can't find them I just automatically assume I must be doing something "wrong" (or at least not doing enough things right, if that makes any sense). But apparently I'm not, at least in this case, and there actually are pretty good answers for why things aren't getting any better. So I guess maybe I can cross "solve CF infection mystery" off my to-do list now? Crazy.

I asked my tx doctor about inhaled antibiotics after transplant, because I've been wondering if maybe I'll be able to use colistin once I get new lungs if I get an infection. Nope. Turns out you still have enough of your own airways that things like bronchospasms are still a problem if you had them before, so colistin will still be a no go. The highlight of this conversation? He asked me whether I'd ever tried colistin long-term, and I said that yes, I used to just "suck it up and deal," which then made me laugh and I said something like "no pun intended." He looked at me like he thought I was crazy (or maybe just like he couldn't believe that I could really make that bad of a joke without dying of embarrassment) and we moved on -- really quickly. Good times.

The rest of the visit was so routine that it hardly seems worth recounting to a bunch of CF friends/family/patients with lots of medical experience -- think bloodwork, vitals, long talks about possible IV drug reactions, and waiting rooms with Judge Judy in the background. I'm not entirely sure why Judge Judy seems to be the daytime TV show of choice at my particular hospital, but I guess it could be worse (like, for example, Judge Joe Brown). There is actually one area of the hospital that has two separate waiting areas -- one for in-patients needing transport and one for out-patients and, I guess, guests -- and it tends to play Fox News in one area and CNN in the other. This is the only place in the hospital where I'm ever grateful to be in-patient, and I'll just leave it at that.

So everything went well, and I'm back home with the monster (who is currently chewing on a bone while lying on top of my boots, which would be fine aside from the mini heart attacks I keep having when I glance up and think for a second that he might actually be chewing on the boots -- clearly I either need to train my dog better or start putting away my shoes), and enjoying some downtime before the start of a busy weekend. Luckily I get to kick off tomorrow with a session of gyrotonics (aka my favorite exercise ever), and my mom and I actually just discovered that the large space next to the Whole Foods in my building is opening this weekend as a spinning studio.

Okay, is it just me or does pedaling really hard without really getting anywhere (but with unseen benefits for your body) seem like a really ironic form of exercise for someone on the transplant waiting list?

So of course I plan to try it.

Stay healthy, everyone!

If You'll Be My Bodyguard

A couple of years ago, I decided it was time for me to buck-up, take a (semi) deep breath, and take the plunge most New Yorkers plan for all their lives. I wasn't sure I was completely ready for such a big step, and a part of me resisted, thinking that I was better off on my own -- I mean, did I really want to sacrifice my independence for a life of schedules and weekly dates? But I knew it was time, and I decided to just leap right in, ready or not. I was 26 and had just graduated from law school when I took that all-important next step into the world of grown-up New Yorkers: I got a therapist.

Surprisingly, although I sought out someone with experience dealing with chronic illness, CF wasn't the main catalyst for my decision. I actually come from a family of believers when it comes to therapy -- which is really just to say I come from a family of talkers who enjoy being the center of attention for at least an hour each week, and are willing to pay someone else for the privilege. Okay, fine, so I'm over-simplifying a bit here, but the point is I've never had an aversion to idea of therapy, even if it took me a while to really get on board with the practice in my own life. And when I left school and faced the prospect of a new fast-paced job, some other major changes in my personal life, and some frightening developments on the CF front -- well, I figured it couldn't hurt to have an objective pair of ears to listen to my rants and insecurities and musings and general ridiculousness.

Obviously I hadn't yet started blogging.

Anyway, fast forward from 2007 to 2010 and I'm still seeing the same wonderful man, making it in my mind a very successful relationship (though I'm fairly certain that he sees other people). And, as you might imagine, the topic of our sessions has largely shifted focus from "CF and other things like jobs and relationships and what-have-you" to "CF and other things like transplants and transplants and transplants." Go figure. I've actually started to amaze myself with the sheer volume of just stuff that I can talk about when it comes to CF and waiting for transplant. It doesn't even have to be important stuff, apparently; the most boring and mundane subjects become of great interest to me when I enter through those double wooden doors and take my seat on the overstuffed green armchair. Worries about where Sammy will spend the night if I get the call at 2 AM? Definitely worth discussing, never mind that he can easily survive by himself for several hours and has a dog walker who stops by twice every day. Questions about whether they'll try to make me use the Vest right away after surgery? Absolutely on the agenda. Concerns about how greasy my hair is going to be after 2 weeks in the hospital with no shower? Yep, brought that one up too.

Clearly I have a real focus on the important things in life, right?

In all honesty, though, I'm extremely grateful for my therapist. It just seems as though lately, CF is on my mind all the time, and I hate that. I know that I have wonderful friends and family willing to sit and listen for hours, if I asked them to, about all the thoughts that are jumbled up in my head regarding my disease, and this surgery, and what it means for my life, but I also know that I'd rather spend the time with them on other things, at least some of it anyway. So I sometimes picture my therapist as a balding, bearded bodyguard for the rest of my family, taking my verbal bullets with a smile so that those I love most are spared hours of mindless transplant drivel and a long litany of selfish complaints. (And to be frank, you guys should probably be thankful for him too -- I have a feeling this blog would be a lot more whiney without him!) It's as though my hour a week in that little room lined with bookshelves and cool photographs helps to transform the major CF/transplant melodrama that seems to be playing on repeat in my head these days into a more manageable little soap opera -- it might be playing in the background, but it doesn't have to run my life. And when I suddenly find myself out of breath and panting from the "effort" of pulling off my winter boots and jeans in the dressing room of a high-end department store, I at least know that there's someone out there who won't mind listening to me sniffle about it later. And that, in turn, makes it a whole lot easier to laugh at it now.

Obviously not everyone can afford a therapist, and some people don't like them anyway. I totally get that, and I wouldn't recommend it as a "must have" for anybody, not even people with severe or "end-stage" CF (note to self: bring up complete and total aversion to the term "end-stage" with therapist!), or those facing transplant. But I do think that it's super important to find someone, anyone, who is willing to listen, and then to actually allow ourselves the freedom to be real about CF and our fears -- even the really little, sort of silly ones -- for at least a little while every week, or however often we might need it. And at least in my case, if I know in advance that I'm going to take an hour to really be worked up about some of the recent changes and uncertainties and anxieties in my life, then I know when it's over that it's time to brush off the tears, shake out my hair, and leave those worries behind for the time being, at least to the best of my ability. And it's the listener who really allows me this freedom, because by just being there and actually choosing to hear what I have to say, the listener (be it a family member, friend, or my therapist) has the power to give me a sense that what I'm feeling is valid, not ridiculous (even when it is) and okay to express. An emotional bodyguard, indeed.

It's a dirty job, I guess, but somebody's gotta do it. I'm just so grateful to the many people in my life who are willing to do so.

Tuesday, January 12, 2010


So after months of anticipation and waiting, it's finally happened! This is the moment we've all been hoping for, and the one I hope will bring about some GREAT changes in 2010 for my life with CF . . .

Okay, okay, I know that intro wasn't exactly playing fair considering that this is a transplant blog, but in all honesty I'm really excited about this website. Started by my fabulous fibro friend Ronnie and his fantastic fiancee Mandi (of Run, Sickboy, Run fame), this is a new website for cystics, their loved ones, and anyone willing to "Join the Cause, Be the Cure." To better explain, I'm stealing a quote from Mandi's most recent post over at RSR:

"We want CysticLife to be a place where people can come when they're down to be picked up, and a place to share your accomplishments when you're riding high. It will be a place to gain knowledge from your peers who have lived it and get it. CL is about becoming comfortable with who you are and what CF means in your life. It is about transforming the CF community into being their own cure. We want to give people the skills to manage their CF and take care of themselves. We want people to go through life with a smile on their face, a can-do attitude and the confidence to take on whatever challenges might come their way."

So please, if you get the time (and really, who doesn't have 5 minutes?), go over and check it out, make a profile, and start connecting with other people who could use your knowledge, inspiration, and power! Just think of it as cystics without borders. Or something like that.

On a personal note, CF and transplant appointments this week, so stay tuned for updates.

Sunday, January 10, 2010

Getting CF Off of Your Chest (And into Their Minds)

I am happy to report that I have now, officially, been bare-chested* for over 24 hours! That's over 1 full day of glorious, comfortable, unrestricted freedom. All I can say is: ahhhhhhh!

*By which I of course mean that my port is no longer accessed. Obviously.

And speaking of chests, there's recently been a lot of, um, "talk" about that very subject on Facebook, as I'm sure more than a few of you have noticed. Or, more specifically, there's been a lot of talk around that subject, since very few people have actually come out and posted the reason behind their constant color-coded status updates. But as word got out and the colors spread like wildfire, it seems a good number of people somehow managed to get the memo about the ultimate purpose behind the madness: breast cancer awareness. A very noble cause, for sure.

As a CFer (and also as a concerned human being), I'm always interested in awareness campaigns, particularly health-related ones. What makes an awareness initiative successful? What tactics get people's attention without just annoying them or interrupting their day? (Sidenote to the guys outside the Whole Foods on my block: I appreciate what you're doing and totally admire your dedication for standing around in the 20-degree weather all to get a few signatures on your petition. I do not, however, feel that accosting people in the freezing cold while they attempt to juggle grocery items, purses, and, in some cases, a portable O2 tank is the best approach. Sorry.) How do you spread enough information to actually raise awareness while keeping it all concise? Extra bonus points for any awareness spiel that I can listen to in its entirety without wanting to fall asleep and/or go into my kitchen for a snack.

Anyway, because I was interested (and because I have Facebook and couldn't avoid it), I have to admit that I sat up and took notice a little bit during this most recent breast cancer awareness campaign. And while I didn't directly participate -- I have friends on FB that just don't need to know my bra color, thanks -- a lot of people I love and respect did. Kudos to them. And a lot of other people I know and respect had some pretty strong reactions to it, as well. Here is a brief sampling of some of the comments I heard/read/stumbled upon throughout the week:
  • A color by itself doesn't really raise awareness of anything. Nor does drawing attention to your boobs. If you want to support breast cancer awareness, do a walk or donate money or volunteer for the cause. Stop taking the lazy way out just to make yourself feel like you're doing something.
  • This campaign was more about flirting than about breast cancer. We get it, girls, you have breasts. Congratulations. Thirteen-year-old boys everywhere are logging into FB in record numbers, I'm sure.
  • This campaign was an awesome way to get the ball rolling. Sure, a color doesn't mean much when taken alone, but neither does a stretchy yellow bracelet. The point is to get people to ask about the status update, and by extension to talk/think/do something about breast cancer.
  • Any breast cancer awareness campaign that makes it onto TV news stations is alright with me, even if the original idea wasn't really my thing. Anything is better than nothing, after all.
  • And this really interesting personal-blog post by my cyster, Talana, (which is actually a CFer's reaction to a cancer patient's reaction to the campaign, if that makes any sense at all).
I tend to fall into the "anything is better than nothing" camp on this particular issue. As long as an awareness campaign isn't hurting anyone, then I really don't think it has to be perfect to still be pretty darn good. But ultimately, I think the best awareness grows out of personal experience: when people who actually have a disease are willing to speak up about it, or wear our chemo hair/scars/oxygen tubing in public, or even just be honest when people ask what's wrong or why we're coughing (because let's be honest: we don't really "just have asthma," no matter how convenient it is to just say that sometimes).

I'm not saying we all have to be in your face CF super-promoters 100% of the time, obviously. And I'm definitely not saying we should all be out on freezing street corners chasing after tired grocery shoppers. In fact, I guess all I'm really saying is that we're gonna cough anyway, so we might as well spend the 30 seconds it takes to tell people what's up. And if they don't want to listen, well, we could always try flashing custom-made bras with written across the chest. You know, just to get people talking.

Wednesday, January 6, 2010

You Asked, I Listened . . .

By popular demand:

Just So You Know . . . (Leah's Blog)

I personally feel this blog needs no introduction, but seeing as I've been lucky enough to "know" Leah for a little while now, I'll give a quick one anyway. Leah is a 28 year old CFer and mother to a stunningly handsome little man. I first began reading her blog as a way to keep up with her recovery after transplant, but I've since been drawn in even further by the cool writing, great pictures, and undeniable flair that she and her husband bring to the table. Enjoy!

(PS: Be sure to check out the entry from a week or so ago where Seth and Leah are actually HOLDING her old CF lungs. Too cool, and makes me totally jealous I'm not at Stanford, which I believe is one of the few centers that offers a chance to see your old organs.)

Quick personal health update for those interested: I am FINALLY finishing up IVs in a few days after a little over 4 weeks and three different antibiotic cocktails. Whew. But seriously, is there any better than feeling than when you turn the corner after an infection? I feel like skipping through the streets (or, you know, I would if it were over 30 degree outside!) and celebrating! So maybe I'll just do the latter, preferably someplace warm and cozy . . . with Sampson . . .and friends . . . and NO silly IV needle!

Monday, January 4, 2010

(Re)Discovering Myself

So this evening I was flipping through some of my usual suspects of CF/transplant blogs to see how everyone's doing, learn lessons, get inspired, whatever, and I came across something that literally stopped me in my tracks -- namely, an entry posted on my friend Leah's blog by her wonderful husband. I don't have permission to link it here or else I definitely would, but Leah is a beautiful post-tx CFer who received her new lungs 3 weeks ago at Stanford (and was home for Christmas in what had to be one of the most awesome recoveries of all time!). And today her husband posted a quick update about life 3 weeks after the gift of, well, life.

The thing that touched me the most was his sheer joy at watching his wife live with healthy, non-CF lungs. And he drove the point home with his observation that there are aspects of her personality that have been hidden behind her progressing disease and are now, to his obvious delight, reemerging. It literally brought tears to my eyes -- such a moving and well-put tribute to Leah's enduring spirit and her ability to heal, to find her way back to herself through the grace of a generous organ donor and her faith. To say the least, I was humbled and inspired by what I'm sure for them was just a run-of-the-mill blog entry. So thanks go out to Seth and Leah for once again giving me that awesome tingly feeling.

I have to say that Leah's blog also made me think, big time. It made me think about illness and its effects, not only on our bodies but also on the other, less tangible aspects of ourselves. It made me think, specifically, about my own personality and the ways that it has changed since becoming "sick[er]" with CF -- for the better or maybe for worse, but maybe just also in neutral ways. It made me think about how hard most of us with chronic illness work to make statements like "CF doesn't define me" and "I have CF; CF does not have me." Statements that we absolutely mean. But then I think about other statements I have heard from post-tx CFers about how transplant allowed them the chance to be the person they were always meant to be, or allowed them to recover a piece of themselves that they thought had gone missing. Statements that are also 100% true. Statements that, honestly, make me sooo excited for the future and my life with new lungs.

Let me say this: I have tried, to the best of my personal ability, to be one of those CFers who can proudly proclaim that I am NOT defined by CF. And I'm not, honestly, because there is just so much more to me than coughing fits or late night treatments or accessed ports or steroid pills. So much of me that quite frankly has nothing to do with any of that. And so I've gone to sometimes great (and occasionally stupid, not gonna lie) lengths to prove that I was and am somehow "stronger" than this disease, at least in mind and spirit if not always in body. And as I've gotten sicker, I've clung even more intensely to my knowledge that who I am cannot be worn down by this disease. No matter what happens, no matter if I end up getting a transplant or not, no matter what the ultimate outcome, I truly believe and know that I am and will always still be Piper -- I will always be more defined by the way I lived my life than by the obstacles that I faced while doing it.

All that said, I think it would be sugarcoating CF to pretend like it hasn't taken its toll on my personality, especially in the past few years. There, I said it. My name is Piper and I'm not 100% perfect -- go figure. Because as much as I try and believe and hope, as much as I know that I'm strong and I think that I'm pretty darn good at the whole "positive attitude even in the face of a whole wheelbarrow full of CF bull****" thing, I still know that, like many of my friends out there in real life and in cyberspace, there are in fact aspects of my personality that don't get to come through as often now that I'm dealing with being "sick" almost full time. It's not because I'm purposefully suppressing these parts of myself; it's just that so much of my physical energy now goes toward the necessary (the treatments, the exercise, the appointments, the resting), and so much of my mental energy goes toward the preparation, and the waiting, and the realities of being, well, really sick -- I can't honestly sit here and say (er, type) to you that I haven't had to let a few things slide to the wayside.

For the most part, I try to hold onto the parts of myself that I cherish. I try to take at least a little time every day to do something to remind myself that I'm human, and more than just a disease or a number on a waiting list. When I have extra energy, this is simple: a visit with friends or dinner out or a walk with my dog can make all the difference in the world. When my body is sapped from antibiotics and steroid-induced insomnia and coughing, it's a little tougher, but a good book or some time spent writing or painting, or even a game of scrabble and dinner in with my mom and sister will lift my spirits when I feel trapped in my apartment and tied to my O2. So that only leaves the days when I'm wracked with fevers or infection, and on those days I just try to remember that I'm surrounded by love. And I'm pretty sure that when John and Paul sat writing the lyrics "all you need is love" they had no idea how applicable the words would be to a bunch of crazy cystics all waiting on a transplant list. Just sayin'.

So I guess as much as I want to believe that my spirit and personality are stronger than cystic fibrosis -- as much as I tell myself that this disease can attack my body but will never touch who I am inside -- I have to admit that there's a part of me aching to see what aspects of myself "reemerge" in a sense after transplant. And I'm reminded of what my sister said as my family of four left the hospital after our initial meeting with the transplant team in May of 2008. As we huddled, overwhelmed and exhausted, in the corner of the crowded hospital elevator, Erin turned to the rest of us and demonstrated, once again, her unflagging optimism: "just think," she said, "ten years ago this might not even have been an option. And now we're going to get the chance to see Piper able to do things she hasn't been able to do in a long time!"

At the time, of course, we all thought she meant physically, but now I'm not so sure. What I do know, though, is that I couldn't be more excited to find out.

Friday, January 1, 2010

My New Lung Resolutions

I guess I should start this out by saying I've never really been one for New Year's resolutions. I'm a long-term goals kind of girl: my "resolutions" tend to be less about what I plan to do this year than about ways I'd like to help myself grow as a person, which means they also tend to be kind of vague because I have to sort of figure them out as I go along. Instead of "I plan to exercise more," I have a tendency to veer more into the realm of "I want to live my life as healthily as possible" -- which can mean more exercise as well as more rest, eating healthier as well as getting more calories, doing more treatments as well as taking more time to nourish my spirit and remembering that nights out with friends are important too. It's not that I don't support more concrete resolutions ("2010 is going to be the year I finish War and Peace," for example, or better yet "the year I write my own novel"), it's just that my mind really likes to view the forest, and leave myself a little leeway to discover the trees as I go.

That said, it's hard not to begin this new year -- ahem, new decade, excuse me -- without some serious personal reflection. There is no doubt whatsoever in my mind that this year is going to bring with it amazing changes for my life, though at this point I can only begin to imagine the extent to which these changes will impact my person, my body, and my spirit. Peering into any new year is like staring down into the water and wondering what's below; for me, this year, I look down and wonder if even my reflection will have changed by the start of 2011. I am excited and impatient, scared and hesitant, and above all, I am curious.

So given the overwhelming number of "big" changes that I think (believe, hope, pray, understand) will come for me this year, I've decided to mix things up a bit and focus on some smaller goals for myself. (And to be totally, completely, 100% honest, I actually started this list a while back, when I was given the wise advice my a beautiful post-tx cyster to start planning and visualizing all the amazing things I wanted to do with new lungs.) Without further ado, here are just a few of my 2010 "New Lungs' Resolutions":

  • Go running in Central Park
  • Buy a beautiful dress, go dancing, and stay out on the floor as long as I want (partner optional -- haha)
  • Spend a day volunteering for a cause that is not at all CF related
  • Play with my puppy more (I mean really, really play)
  • Sketch in a museum
  • Continue to journal/write/paint/express myself
  • Take a tai chi class
  • Continue to meditate
  • Dance in the rain -- literally
  • Watch a sunset and a sunrise (need not be the same day)
  • Find a way to do something to say thank you to my family for everything they've done for me this year
  • Be grateful. Be patient. Be humble.
  • Practice compassion for myself and others at every chance possible (okay, so maybe I'm aiming a little big with this one, but I promise myself I'll try)
There are other things -- many, many other things -- that I plan to do with my new lungs, of course. Some of them I know I won't be able to complete in a year, if for no other reason than there are just too many things I want to do, and also because some involve traveling that just won't be possible right off the bat with transplant. But thankfully I have plans to be around for more than just the next 365 days, and if each day just brings me closer to any one of my goals then I'll know it's a success. And you know, if some (or even all) of these things don't work out, well, then I at least resolve to try and keep learning, keep growing, and keep trying to push myself to be as strong and as loving and as much of a light as I can possibly be . . . I might not ever be worthy of the Peace Prize, but hopefully I can at least make a few people smile.

And that's not too much to hope for, right?

Happy 2010, beautiful people. I hope your year, and your decade, is filled with health, love, and blessings beyond even your wildest dreams.