(Almost)

Well, here it is, beautiful readers. Spring has finally sprung in all its (almost) warm weather glory, the West Village is full of (almost) graduated seniors who are all-too-ready to revel in the (almost) finished school year, my shorkie is looking (almost) skinny in his new summer haircut, and I've (almost) hit another milestone in this crazy, winding, wonderful and (almost) mind-blowing journey that we call post transplant life. By which I mean, of course, that as of this week I am (almost) at my 11-month transplant anniversary.

And, oh! readers, what a difference an (almost) year makes!

Because (almost) 11 months ago today I was still trying to recover from an (almost) transplant (aka the infamous "bad dry run") and was spending most of my time just struggling to breathe on (almost) destroyed lungs. The remaining hours were a toss up between the sleep that was my (almost) favorite activity during that period of my life, the treatments that took up (almost) 6 hours of every day, and the desperate attempts I made every so often to keep up with something that was (almost) like the life I had known before CF got the best of me. And, when I got really lucky, there were even one or two moments out of every day when I could (almost) forget what was happening to my body, thanks to the amazing community of friends, family, and yes, even doctors who (almost) always knew (almost) just the right things to make me feel (almost) better.

Or, to put it another way, life back then was (almost) all about the uncertain: those all-consuming goals that seem to lie almost within our reach, the destination that is almost around the next bend, and that pesky arch of pure color in the sky that promises a pot of gold if we can make it to that spot just almost right ahead of us. And it was, in a strange sense, an (almost) perfect way to live -- if only for the fact that it forced me to keep my heart in the moment and my eyes on the constant "almost" that was always just a little bit beyond my own horizon

Oh, yeah, and it was also (almost) 11 months ago when I sat down and wrote this:


In all seriousness though, I'm sorry for being such a bad blogger. I never meant to be gone for almost a month. I promise it started off innocently enough and with the best of intentions -- by which I of course mean that I got sick and decided to spare you all the invite to my personal pity party. Not to mention the fact that I also started high-dose prednisone to combat said sickness and, well, let's be honest: blogs written on steroids should probably come with their own special warning label. So instead of going through all that, I decided to take a little break. And gosh did I ever spare you guys a lot. Seriously, you can thank me later. ("It's My Party", posted May 12, 2010)

Wow. I guess sometimes 11 months can make (almost) no difference at all, huh?

Because the truth of the matter (or at least my truth, because that's an important distinction), is that while transplant has been (almost) unbelievable and sometimes feels like (almost) a cure, there are still times when I think that maybe almost just isn't good enough. There are times when I still --- even (almost) a year after receiving my beautiful, gorgeous, miraculous gift of life -- have difficulty writing on this blog. It's as if I'm (almost) afraid to share the fact that I've been back on IV polymyxin for (almost) an additional month now, or to admit that this means I've gone (almost) the entire time since my transplant still soaking up heavy-duty antibiotics like it's my job. And sure, I could mention the fact that my lung function right now is (almost) as good as I've ever seen it or that or that most days I wake up feeling (almost) "normal" (whatever that is, anyway). I could go on and on about how I'm (almost) able to feel like a dependable human being again because my 4ish-hour medical appointments are dwindling in number to an (almost) tolerable level where I (almost) don't leave in a murderous rage and am (almost) able to imagine that I have a life outside being a full-time transplant patient. Or, of course, I could let you in on the flip side of all that, which is that I (almost) always get home from even a few hours out exhausted because of all the side effects that come with my (almost) overflowing medication cabinet.

And believe me guys, I almost sat down to write about that all about once every single day for the past month. Almost.

I think the real truth of the matter is that there are always (almost always?) at least a couple of "almosts" in the mix when you're dealing with chronic illness -- or even with a chronic illness brought out as a sort of Hail Mary pass at a "cure" for the original chronic illness, as I'm now learning. There are always going to be issues -- some that are (almost) ignorable and others that are much more serious -- surrounding my own health and the health of those who share my disease. There are always going to be questions that don't have easy answers, or days when it all seems to come crashing down on top of us, or even those where we seem to come crashing down ourselves. There will be moments when we are overwhelmed by how much things have changed for us, and moments when we are equally as overwhelmed by how much they really haven't. And when it comes to all of that, I can say with absolute certainty that these are universal truths of human experience, every one of them. There's no almost about it.

And so tomorrow I will go to my transplant clinic, where I am (almost) sure that my doctor will stop my IVs and allow me to wait it out until my upcoming appointment for with my ENT -- which, by the way, is actually on the 12th and therefore explains why it would have been (almost) impossible for me to post this on my actual 11-month anniversary with my beloved Donor Bob. I am (almost) positive that the ENT appointment will lead to sinus surgery, itself another fun fact that (almost) everyone living with CF can look forward to at one point or another. And after that, if everything goes smoothly or at least (almost) according to plan, I am looking forward to maybe casting off this (almost) never-ending cycle of IVs and looking ahead to the next phase of this (almost) unbelievable experience of learning to live with (almost) perfect lungs in an (almost) never boring CF-meets-transplant-meets-Piper kind of life.

And I think I'm (almost) ready.

The Little Things

This is a picture of my thermometer.


I acquired this little yellow doom-stick in a total isolation room on the seventh floor of my hospital. It tried to "stick" it to me (terrible pun totally intended) by registering a fever on the day of my planned discharge and royally freaking out my doctors. After I had weaseled my way out of the situation with the help of my good friend Tylenol and all the argumentative force of a very expensive legal education, I figured the little troublemaker owed me a favor or two, so I pocketed it. (Note to readers: this is 100% legal in the hospital with disposable thermometers -- you've already paid for them anyway.) Unfortunately, in my glee at "free" new medical equipment, I forgot and left my beautiful blanket behind on my hospital bed. Hey, you win some, you lose some, right?

And what I "won" in this case was a judgmental piece of plastic that lately has been spoiling my plans way too often, despite a hefty dose of immuno-suppressants and a polymyxin/aztreonam IV cocktail. To say that me and "Thermy" here are not close friends would be an understatement on par with calling the cast of Bravo's Real Housewives, "just a little bit annoying." Still, most of the time the two of us are able to bury the hatchet and get along for the 10 seconds or so that it takes Mr. Killjoy to do his job and register a fever.

Most of the time, that is, until last Friday.

The events in question started out pretty much like always in that I was super cold and shivering under about 15 blankets when it suddenly dawned on me that maybe I should actually take my temperature rather than blaming the 60 degree weather outside. So I fished the little monster out of my medicine cabinet and popped it in my mouth. As I did so, I also made my patented cross-eyed contortionist face, which allows me to see when the little "F" on the thermometer stops blinking, and then I know the reading is done. It's a fun little party trick, only this time my friend, who was standing about 10 feet away from me, happened to pull a confused face of her own.

"Hey Pipe, why are you still holding that thermometer in your mouth? It's been beeping for a while now."

Um . . . pardon my language here, but shit. Turns out the thermometer that I've had for 4 months -- the one I thought was annoyingly silent -- is, in point of fact, anything but. The darn thing beeps, apparently with some repetition, and it has been making this beep at me every day at least twice a day, week after week, month after month, from a distance of about 6 inches from my ear. And I have never heard it. Not even once.

Okay, so let me just pause for a second here to acknowledge that this is not the end of the world. I have known for over a year now that I have permanent hearing loss at the high frequency level from a lifetime's worth of high-dose tobramycin use. And, weirdly enough, I'm okay with that, especially because my particular case is very mild by hearing loss standards. Even on the day I failed my hearing test I didn't really think much of it. I was, more than anything, disappointed by the loss of yet another helpful drug to the side-effect gods and my life more or less continued on as normal -- I just sort of accepted that I wouldn't be able to understand people very well if there was a lot of background noise and then I moved on. There wasn't anything I could do about it, anyway.

On the other hand, though, the incident this past week really threw me for a bit of a loop, and I have to admit that I'm still a little confused as to why. I mean, not to sound dramatic or anything, but I wake up every morning and pop a handful of pills designed to make my body as vulnerable as possible to any and all infectious agents, with the hope that such vulnerability will also help protect the foreign organs that currently reside in my chest. I follow this up with shots to ensure my blood doesn't clot and (more often than not for the past few years) several hours spent plugged into high-dose antibiotics that make me walk like a drunken sailor and lose much of the sensation in my face and hands. I'm completely used to checking my blood sugar and giving myself insulin shots at the dinner table by now, and I'm surprisingly cavalier about waltzing around New York City with a needle sticking visibly out of my chest. And given all of this (not to mention the slew of other stuff people with chronic illness face on a daily basis), you'd really think it should take more than a silly beeping thermometer to ruin my day. Right?

Wrong.

That insignificant piece of plastic and its inaudible beep really, really, really pisses me off.

People like to tell us that we should focus on the beautiful little things in life, and also that we shouldn't sweat the small stuff. But I'm the first to admit that, more often than not, I seem to get it the other way around. Lung failure and subsequent open-chest surgery, constant IVs, and a medication schedule that would confuse most pharmacists seems, well, kind of run-of-the-mill to me now. Not to sound blase or anything, but I've been through it, I've seen friends go through it, and I've even learned to laugh at some of the morbid stuff. I had to. But yet I still get angry and defensive when my family (lovingly) teases me about my less-than-perfect performance as a patient in the ICU. I still get mad when my housekeeper rearranges my medicine cabinet (do.not.touch.the.drugs.), and I'm kind of ashamed to even admit how pissed off I get when I can't find a cab in the rain. And yes, even I am aware that the last one on that list is possibly the single whiniest complaint ever. I'm still 100% guilty as charged.

So, yes, it's true that I can ignore a rainbow or a kind smile from a stranger, and still get my day "ruined" by something that I know is, in the grander scheme of things, probably not even that big of a deal. And for the record I'm not saying that hearing loss of any kind at 29 is acceptable, but I am admitting that I'm not quite sure why I choose to focus so much energy on that, rather than on the multitude of other things that are going right (or wrong) at any given moment in my life. I'm not sure why I can handle talking about an infection that nearly killed me, but not about the ICU that saved my life. And I'm not sure why some things seem so much more intense in the moment than they do, say, a couple days down the road -- or even to the person standing 2 feet to the right -- while other things can seem like no big deal at the time, until I work myself into an angry frenzy two days later. I think that for me personally it all comes down to the way I see myself (whether that be as someone who can laugh at a little thermometer or as the world's best ICU patient), but it could just as easily be about trying to put forward an image of the person I wish I could be.

I do know for certain that it's not for me to judge what's big or small in another person's life, especially when I can't even get it completely sorted out in my own. I've also accepted the simple fact that it isn't up to me, at least on the very gut level, what sort of things will leave me chuckling at my own ridiculousness and what will make me cringe every time I hear the story. What is up to me, however, is the way I choose to react to something once it's already happened: how and when I choose to let out my frustration, the conversations I might need to have to solve the problem, and what I might do to minimize my discomfort in the future. I can't necessarily promise that I'll never be caught sweating out the small(er) stuff, but I can choose to ask the question of why something is really bothering me and what the best way is to deal with the problem. And if I'm really strong I might even choose to listen to the answer.

Provided, of course, that I can even hear it.

Pushing the River

Personal Journal Entry: April, 2010

Well, it's a new journal and I'm still here waiting for new lungs -- it's going on 8 months now, I guess. I just realized today that it was actually April of 2009 (one year ago) that [my CF doctor] told me I needed to go active on the lung transplant list. I remember how stunned and scared and shocked I was that I might actually be "ready." I remember thinking I wanted more time, or that she was crazy and jumping the gun, or that surely I would wake up in the morning and all of this would be a bad dream. And now, one year (and 8 months on the list) later, I feel equally stunned and scared and shocked -- only this time because I suddenly realize that I probably don't have that much more time and "my miracle" still seems a long way off. It seems to me a bit of a lesson in contradictions: on the one hand I always wanted to fight with my old lungs for as long as possible, and on the other I am now admittedly beyond frustrated with the waiting. But I guess more than anything this has taught me that you simply can't fool the Universe -- clearly I could survive this long with my old CF lungs, so maybe it's right that I still have them?

I keep going on and on about trusting my doctors and myself, etc, but I think the real truth here is that I need to just learn how to trust in God and in whatever force it is that we call the higher order/plan. If I've learned nothing else in these months of waiting, it's that I can't force my will on this process (my friend Carolyn would say "you can't force the river", though Lord knows most of us will never stop trying). The fact of the matter is that my lungs will come when the time is absolutely right -- my donor's life will stop at exactly the right moment and the stars will align in exactly the right way -- whether I like it or not. And when I think about it that way -- when I really consider that maybe my role in this Universal drama is just to do all I can to be ready for the moment when all the ingredients that are beyond my control come together -- well, somehow that makes everything seem just a little more manageable. Because short of going out and mowing someone else down with my car (which would probably get me removed from the list, among other more serious consequences), or somehow contriving to get myself on a vent (which just sounds unpleasant), there's not a whole lot I can do to ensure that I get lungs tomorrow, or the day after that, or the day after that, or for that matter ever at all. I can keep myself healthy and I can keep on choosing to trust. Everything else, much as I hate to admit it, is just beyond my control on this one.

Just as I couldn't delay CF's attacks on my current lungs just by being too stubborn to go on the transplant list, so I can't will lungs into existence simply by being ready. The best I can do is evaluate my current situation and choose to see it as a part of something that matters: as a lesson to be learned, as a poem to be cherished for its simple beauty and longing refrain, or simply as a river to be crossed on my way to something beautiful.

[. . .]

Because, after all, you can't push the river.

4/12/2011

Dear donor Bob:

Thank you for blessing me with so many new rivers to cross, and for being such a huge part of all that is beautiful. Most of all, thank you for coming at exactly the right moment, just as you promised you would. It was crazy and it was chaotic and it was beyond scary. But you, my friend, were totally worth the wait.

Happy 10 months to us.

xoxo,
Piper

Say When

One of the things that I, and most people with chronic illness, struggle with is the question of "when to say when?" Oh, wait, scratch that. I guess I should have said that one of the problems that pretty much every.single.person. in the world struggles with is "when to say when?" Seriously, let's just call a spade a spade and admit that this one's a universal brain teaser: all of us wonder how much is too much, and when enough is enough. And if we're really lucky, a few of us might actually come up with the "right" answer (or, you know, right for us, anyway) every so often. It's a little process that my friend Charlie and I like to call "whenning!"

Sorry.

Lately I've felt all sorts of pressure in this area, not gonna lie. It's something I've learned to live with, of course, but that doesn't necessarily make me an expert. When I was a child, for example, I was told not to horseback ride (I ended up competing internationally in showjumping), I was told to slow down and take college in several years (did it in 4 with multiple majors), and I was told there were a lot of really good places for me to live -- just so long as it wasn't a stuffy apartment in a gigantic city. Awesome.

I don't say any of the above to brag, by the way. If anything, looking at that list (and noting the countless examples I could have used as well), I'm a little embarrassed by my own stubbornness. And yes, before anyone keels over from the sheer obviousness of that statement, let me be the first to admit that I, Piper, am sometimes just a tiny bit on the stubborn side. Only rarely though, because the rest of the time I'm just flat out super stubborn. Let's just say it's part of my charm.

The thing is, I've recently had the privilege of talking with a lot of CFers and CF parents through this blog and other mediums, and the most common questions I get (besides the "what would you do differently if you could do it all again?" zinger, which is a whole 'nother blog to say the least) all have to do with the "when/when" question.

If my CF child seems a little lethargic but not overtly sick, when do I push him to get up and be active and when is it okay for him to stay home from school and rest a little longer?

If my kid needs to gain weight, when do I push him to eat and when is it okay for him to just tell me he's full and leave the table?

If I have some sort of really important or exciting event coming up, but I know it might run me down and make me more likely to get sick, when is it okay to choose "life" over CF for a day or two and when is that just asking for trouble? And how do I do that maybe just a little bit without being totally reckless about it?

If my heart is truly telling me to do something that I know my doctors won't approve of, but which for one reason or another means the world to me, when do I stand up and assert myself as a person, and when do I need to just bow my head and listen as a patient?

When do I know it's time to bite the bullet and go see that transplant team my CF doctor's been blabbering on about at clinic, and when is it okay (even beneficial) to believe that my lungs are magical and this scarring is totally gonna clear up tomorrow if I just push a little harder?

And, of course, my personal favorite,

If I really truly super duper honestly and cross my heart adore my job and can't imagine doing anything except what I'm doing and worked really really really hard to get here but know that it's really taking a toll on my lungs and body, when do I know the time has come to choose my physical health over my mental health? And once I DO make that extremely tough decision, when do I know if it might be safe to start crawling my way back or trying out something new, even if I just got put BACK on IVs for the 8 billionth time in the last 3 years and am now facing 2 weeks of polymyxin with a side order of sinus surgery?!?!

You know, not that I have a personal connection to any of these questions or anything. I just really enjoy detailed hypotheticals, is all.

Unfortunately, most of the time I don't have any answers, which just leaves me standing before an expectant parent (or staring blankly at a wordless reply email) and wondering whether I could casually pull the fire alarm as a way to change the subject -- though something tells me that wouldn't work too well in an electronic communication. Because, the thing is, I don't actually know what your (or your child's) limits are. I don't. I have no idea whether you're making the "right" decision by keeping him home from his best friend's birthday because that kid down the street has the sniffles, or if adding that biology course is a "good idea" or just an unnecessary risk for an English major. I can't tell you whether to get a dog because some people are allergic and some dogs bite, or whether to live in a big city because some places in the city are decidedly dirty but on the other hand you'll probably have access to great health care. What I can do, though, is be open about MY experiences, and admit that I've done both those things, risky or not, and I'm still breathing.

Since the transplant, my personal questions have changed a little bit, but they're still very much a part of my life. As an immunocompromised person, I risk infection every time I step out the door, but for the most part I still keep stepping. On the other hand, I now find myself "saying when" sometimes when before, with my CF lungs, I probably wouldn't have batted an eyelash (yes, NYC subway system, I'm looking at you on this one). Also -- and I'll admit that this one's a kicker for me -- I don't understand nearly as much about life with CF after transplantation as I did about life with CF before transplantation. I don't know when I can insist that the random pseudo they found in my bronch probably isn't a big deal and anyway I've got big plans for the night, doc, and when I should just suck it up, smile as graciously as possible, and check myself into that darn hospital I love so much. I don't yet know how big the risks are and (far more importantly), I don't yet really know my "new" body and how it will react to all this stuff I put it through. And, yes, for those of you keeping track, that's multiple times in the very same post that I have admitted that I just don't know. I'll just hang out here while you all go alert the media.

I guess the point I'm trying to make is that I'm not sure there is a "right" answer in some of the more complicated "when/when" situations. Sometimes there's a right choice in the moment (the choice, for example, to grab life by the horns and go for it) that might not in fact be the right choice in the long run. Or there's a choice that might be right for your health, but not so much right for your sense of yourself as a person, and your personal life goals. And sometimes the "wrong" choice (to put yourself through rigorous schooling for a stressful job) turns out to be right when you end up with killer insurance and awesome sick leave or disability policies.

Most of the time with these types of decisions you're not going to please everyone involved, but you are going to have to live (and hopefully make your peace with) the results. Which is why when people ask me that other question -- the "what would you do differently?" monster -- my usual answer is that I would probably do it all a lot differently, if I knew then what I know now.

And then I just thank God that I didn't.

Writer's Block, and Other Blessings

So if you come to this page with any sort of regularity (or even if you just stop by every once in a while to check in on Sampson), you may have noticed that there has been a distinct lack of blogging going on around here lately. And this alone wouldn't really concern me if it weren't for the simple fact that, well, it's a BLOG after all, so the act of actually BLOGGING is more or less central to the whole idea. Which of course leads to what will from now on be known as "BadBlogger Syndrome" (or BS, for short): a crippling condition that makes one increasingly unable to form a coherent written sentence.

Or, to put it another way, I've had a SERIOUS case of writer's block. Hey, just one more illness for my collection, right? Add it to the list, boys.

Being a good patient, of course, I've worked diligently over the past few weeks to come up with a cause and a treatment for this new illness of mine, and unfortunately nothing seems to work. I do know that my writer's block most definitely was not caused by a lack of Cf/transplant/medical stuff going on in my life -- actually, quite the opposite. In the past month or so since I stopped updating regularly, I've been on IVs, been taken off of IVs due to side effects, seen my doctor several times, had the wonderful opportunity to be present at some very inspiring and impressive events within the CF community, and dealt with many of the "little perks" that seem to go hand-in-hand with a lifetime of chronic illness and immuno-suppression (neupogen shots, anyone?). In short, it's been as wild and as thrilling a ride as ever, but for some reason or another very little of it has ended up here. Not even that time I caught my overweight puppy happily gnawing on what I thought at the time was a red plastic chew toy but later turned out to be a Boost Plus bottle that was (when I left it) half full on my kitchen table. Score one for the Sam-Man on that caper, for sure.

You see, it's not that my life lately has been CF or transplant free (because hey, let's face it, when is this life ever free from the demons that haunt us the most -- whatever those might be for each of us?), but rather it's just that I haven't really been able to bring myself to sit down and WRITE about that stuff lately. And I'm realizing now that maybe those sorts of breaks are not only okay, but even necessary. Maybe sometimes it's important to take a step back from some of the things that do affect our everyday lives, that make us different and special and crazy, that teach us lessons and bring us pain, that make us hope and wish and believe and cry and start all over again the next day, and that do -- no matter how much we hate to admit it sometimes -- define a piece of each and every one of us, whether that means submission or rebellion or anything in between. Because like it or not, I AM CF -- it's just that I happen to be a whole lot of other things along the way, and sometimes those other things take precedence.

So I guess when it comes right down to it, I might be suffering less from BadBlogger Syndrome or writer's block (or whatever you want to call it) than I am from just your average, run-of-the-mill identity crisis. After all, as Walt Whitman so famously wrote, "I am large, I contain multitudes." And it would seem that at least one of my multitudes sometimes requires some distance from the part of itself that carries this disease so openly and willingly. Which is why I think that, for me personally, there will always be a value in the spaces that come between the sentences on any page, the lines on any poem, or, yes, even the posts on any blog. Because ultimately I know that, when the space is over, I will always find my way back to the words that keep me going and the lungs that keep me alive.

And back, of course, to the community of individual multitudes who make it all worthwhile.

Journeywork

As most of you familiar with this blog probably already know, I am not a poet.

I am, at various times and places, a student, a server, and a storyteller. I am a somewhat rebellious patient and a somewhat competent doctor at the same time. I am tall and I laugh a lot. I am often very loud and outgoing, aside from the times when I am extremely quiet and observant of others. I recently had a doctor actually ask me if I was flipping him off in his own office (I wasn't) -- and I'm pretty sure he was only half kidding. I am giving, crazy, driven, successful, frustrating, somewhat pretentious, spoiled, intelligent, and prone to calling people out for their interesting quirks and/or contradictions. I am equally prone to being called out. I love things that are simple, I crave intensity, and one super bright color or perfect expression will stop me dead in my tracks. I, my friends, am all these things, but still I am no poet.

And every time I forget this precious nugget of self-awareness I end up with something like this:

Roses are red
But my lips are all blue
How 'bout some lungs, God?
I think I'll take two.

(I store my Pulitizer in the kitchen, by the way. I just don't like to brag.)

And yet, despite my inability to actually WRITE a coherent verse, I also have to admit that I am a HUGE fan of the stuff. From my girlhood crushes on Keats and Eliot to the many obsessions that have come along the way, I just can't shake the fact that sometimes these abstract figures with their untouchable magic typewriters, these wizards or words and viceroys of verse, these (ugh) POETS with their faded type and clusters of glued-on glitter are, in all fairness, really, really smart people. Like, for example, when one of them manages to find these words within her pen:

One day you finally knew
What you had to do, and began (Mary Oliver)

When I started the process of living my life independently with CF, I was terrified. As I took on more and more responsibility for my disease, my potential for error increased, and so did my fear. There were mistakes, there were triumphs, and there were moments of such intense emotion that I actually made the girl in the dorm room down the hall (that one who cried for two days when she got a B instead of an A on some silly calculus exam?) look normal. In short, I was a child (or at least an adolescent, which is probably even more terrifying) and, although I was willing to help myself, I'm the first to admit that I wasn't always great at figuring out how to do so.

And when, in January of 2008, my beloved CF doctor sat me down per usual on a rubbery exam table mattress and, instead of asking to feel my belly and listen to my cough, she instead looked me straight in the eye and referred me for transplant evaluation later that year, I shook her hand, walked calmly out of the office, and promptly lost all composure next to a street vendor on 168th street. To say that I was frightened would be and understatement, as would the words "confused" and surprised. I didn't know heads or tails about this new situation, and so I wandered forward, brimming with questions and desperate for any sort of foothold.

But it wasn't until I got my double lung transplant in 2010 that I ran smack up against a wall that was, for me personally, one of the most difficult challenges yet: living life as a transplant patient in a way that still allows me to live life as, well, Piper -- the not-so-poetic but otherwise somewhat interesting woman and blogwriter you've all come to know and tolerate. And, since I was pretty sure living like me included living MY LIFE (as in setting the ultimate goal of return to work, travel, and some form of "normalcy" whenever it's actually feasible), I have to admit that I was, at least initially, a little thrown by the many restrictions brought on by immuno-suppression, the obstacles to full recovery, and the continued close follow-up by my dedicated care team. I can't be sure of what I was really expecting, but I think it mint have been something like "here's your new lungs, now have fun in Paris!" truth be told, my story's been a little more "here's your new lungs, see you back here in a week." It's not anyone's fault or anyone's error, but it is a situation where, once again, I find myself up against something in the health world that is harder than I expected.

The truth is, though, that there is never just "one day", as Ms. Oliver's words might have us believe, when we know exactly how to begin forever. There are, instead, many small beginnings along the way, each of which brings us closer to our goals, and carries us further from the fear and confusion in which we began.

When I was young, I realized I didn't have to ignore CF or become CF, but that I could just be me, with CF and a whole lot of other stuff, and be okay. I can't even tell you how badly I needed the wake up call, but I began the process. Throug that, I learned that I have intrinsic value and deserve recognition for a lot more than being a patient, and that some recognition for being a member of the CF community was okay too,

In my mid-20s, I realized I needed an outlet to deal with this whole transplant process and I created this blog. I needed to do it, so I began, at which point I learned that I can write, that sometimes I can even write well, and that I'm so far from special I can barely stand it. People get double-lug transplants all the time, and I plan to be around to see that success rate skyrocket.

And now, facing 30 with CF and the lungs of a beautiful stranger, I've come to learn that there is once again life beyond the medical. I've come to accept my fears (past and present) as valid. I've come to appreciate that simply having a transplant does not make me stronger, wiser, or kinder than any other human being. I've come to the amused conclusion that I know more about life wi chronic illness than my wonderful doctor. I've also learned that I often don't know as much as I like to think I do, in medicine or pretty much anything else. I'm in the process of learning that's okay. I need it -- oh God, do I need it -- and if nothing else, I have begun.

I am, I hope, far from finished in my beginnings.

There's a lovely part of her poem where Oliver, herself, begins her mastery. Having given us the encouragement to leap, she continues with an almost irresistible promise:

But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.
(The Journey)

Safe journeys, every one of us.

Inquiring Minds

Hello, beautiful blog readers.

I'm sorry I haven't written in a while. After I get out of the hospital there's always a sort of "regrouping" that occurs -- time when I just kind of struggle to get back into the swing of normal (ahem, well, normal for me anyway) life and all that entails. I'm sure many of you out there know the drill as well as I do: there are new med schedules to synch up with whatever routine you already had, new prescriptions to fill and doctors to visit, new additions to your day like extra blood draws or physical therapy, weight to gain (yay for no more hospital food!), friends to call, emails from frantic relatives/coworkers/teachers/friends/friends-of-friends/cousins-of-friends/mailmen/etc to answer, and relationships to be renewed after your short "mini-vacation." Honestly, I sometimes think the time directly post-hospital is more difficult for me mentally (and sometimes physically) than the time spent actually IN the joint. Granted this is probably because I tend to be pretty harsh on myself and focus on whatever I'm NOT accomplishing rather than the things I AM, but still. The fact remains that life post-lockup is sometimes, shall we say, somewhat less than relaxing.

All of which is just to explain why I haven't managed yet to sit down and write a real, honest to goodness blog post in the past week or so. And, quite frankly, why I'm still not quite able to do that today. Yep, sorry guys. I don't have any health updates (see my doctor again tmw, actually) or news to share right now, so I decided to take the cheater's way out and do something I should have done a long time ago.

Answer your questions.

See, if you glance over to your left, you'll see a contact info section on the sidebar of this blog. A surprising number of you have not only found that little hidden treasure, but also used it, for which I am both grateful and (gotta be honest here) totally shocked. The number of you who want to talk to me about everything from your wonderful lives to, well, your breath (or lack thereof) is both humbling and really exciting, because I get to see for the first time the depth and diversity out there within our little CF community. So cool. Anyway, more to the point, many of you also include in your emails questions about me, my life, my health, and my "everything in between." I try my best to respond to everyone personally, but I also get a lot of repeat questions and some that are just too unique and creative not to share with the whole. So, without further ado, I bring you the first ever edition of Everything You Ever Wanted to Know About Me (And Weren't Afraid to Ask!). Enjoy!

Q: Alright poser, you talk a lot about being "from Colorado," but I've also heard you mention a whole bunch of other places that you also say you've lived. Where were you born, anyway? And did your moves have anything to do with your CF?
A: The simple answer is that I was born in Colorado Springs, CO (a city renowned for its beautiful views, Olympic Training Center, and a whole lot of military bases). My parents both have roots in TX and OK, though, so when I was young we did move to Houston for a short time, then moved back almost immediately. The return to CO was, so far as I know, the only move that was primarily driven by my health needs. Beyond that I have lived in Boston, Denver, Atlanta, and New York City. Through it all I was blessed to have great care primarily out of Children's Hospital of Denver.

Q: Your dog is super cute. What the heck is a "shorkie" anyway?
A: Shorkie is a fancy name for "mutt" in that it denotes a shih-tzu (sh) and yorkie (orki) mixed breed. Sampson was sold to me (yes, I admit that I bought my dog. I am not, it turns out, the most socially responsible person on the planet) as a shorkie. In retrospect, I think this is untrue. He looks waaaaay too much like a Lhasa Apso for me to be satisfied with the "shorkie" designation.

Q: If you had your whole transplant journey to do over, is there one thing you would change?
A: Wowza. Um, yeah. I mean, I think so. It's actually hard to say, because the result was so amazing and I'm one of those people who truly believes that events flow out of each other, so I'm not sure I would "change" anything for fear of disrupting the final outcome, if that makes any sense.

I will say this: my family had a very dark time right before my actual call for transplant. There's a blog post about it somewhere (look around June 9th or 10th in the archive), but basically we were confused and thought that we had actually been knocked down on the list. We went out to dinner and had this tearful convo where everyone kind of let loose, and it suddenly became very clear that we were all really struggling to hold it together. I wish, in retrospect, that we could have been more honest about all that before the night in question. I wish we hadn't lost the faith, even for those few hours. Because getting the call from that dinner table was hard, and I was beyond shaken up by it all. I really wanted to be more peaceful as I was wheeled into surgery -- as it was the whole experience (from the fight at dinner to the disorganized chaos at the hospital upon arrival) was rattling. Not so fun, and I wish my last memories of my old lungs were a little sweeter.

Q: What are your top three things to have in the hospital?
A: Easy: 1) my own pillow/blanket, 2) something that connects to the outside world (preferably computer, but phone works), and 3) my own snacks. Obviously this assumes you would bring your own comfy clothes as well, but if not sub out #1 for clothes. I hate sleeping on hospital bedding, but I'd rather do that than wear a gown all the time!

Q: What are you finding to be the hardest thing about post-tx life?
A: Right after surgery EVERYTHING was hard. When I first came home I couldn't walk much, couldn't focus attention on anything, and couldn't really muster up much enthusiasm even for things I really wanted to do. I hurt and was tired, and I cried A LOT (weird for me, for sure). I actually wondered if I had made such an awesome choice. All that changed about 4-5 weeks post-surgery, and then I felt great. Seriously, it was a total "welcome to the world" moment...I just woke up one morning ready to kick some proverbial butt. And yes, granted, it was more of a transition than that in real life (little accomplishments every day added up), but it really felt kind of like flicking a switch when I finally crossed that line. Now I feel very much like me, only better!

Q: OMG, Piper, I've been reading your blog and I can't make sense of any of this. You got a transplant! You should be healthy! Why were you in the hospital? Are you going to get out soon? Come one, be honest. I can handle the hard truth. I just need to know one thing: ARE YOU OKAY?!
A: Yikes. Okay, first, take a second and just breathe. The last thing I need is any of my wonderful breathheads passing out from worry over ME (especially since I know we all have so much of our own stuff to deal with). So just relax, and then trust me when I say the following message, which I mean with all my heart and which is 100% the truth as I know it.

I. Am. Perfectly. Fine.

Yes, I have infections and yes, I had to go to the hospital. The thing is, though, I felt fine going in, and now that the drugs are done I feel fine again. I need to get my sinuses checked out because they may be dripping into my lungs. I need to get my weight up a bit. I need to increase my WBC count and I need to STAY HEALTHY. Other than that, though, I'm golden. The hospital stay mostly consisted of meds; meds that they don't like to do at home because of their side effects and/or special administration requirements. But for all intents and purposes I checked into the hospital to: 1) start polymyxin, 2) desensitize my body to cephalosporins, and 3) complete an in-hospital treatment for a virus. Easy peasy, right?

Q: What made you start blogging?
A: Basically I wanted a place to tell people (mostly CF friends who don't live in NYC) about my transplant eval experience. I realized pretty quickly that I didn't have time to fill everyone in on everything individually, and I started the blog to kind of post updates and thoughts that were too long or silly to repeat over and over in 50 separate emails. This blog is basically my response to the mass email, because I hate those.

As it grew, I expanded the blog a bit to include more day-to-day CF/tx stuff. My original thought was that this would be a chronicle of working life with with CF -- particularly in a fast-paced professional atmosphere. I soon realized that 1) while I was working I had very little time for blogging anyway, and 2) I was getting sick so much by the time I started this blog that my posts were less about balance and more about how to find a lifeline when you're drowning. I left work in April, 2009 -- about 9 months after starting this blog. I still believe that it is 100% possible to find a good, fulfilling, healthy balance between work and CF. I think I did balance work and CF effectively (not, however, perfectly) for several years. By the time I started this blog, however, it was clear that I needed to start scaling back and focusing on transplant. I did work full-time until about one year before my transplant, however, and I'm proud of that.

Q: How many nicknames does your dog have anyway?
A: A LOT. The most common names used on this blog are Sampson, Sam, Sammy, Sam-man (also written The Sam-man), Sammybear, Puppybear, Bear (also written The Bear), and Bearcub. Other people in my household call him Sammy-lito and Bearser, while my friend Julia calls him "The Muff" (short for muffin, maybe?). My sister, I should note, calls Sammy "Samuel P. Samuelson" (the "P" apparently is for "puppy"). This is decidedly NOT Sam's name, and I tell her that frequently.

Interestingly, none of these reflect the actual name on his papers which is, I kid you not, SAMPHSON. Yeah, I was horrified too.

Q: Who is this sister we keep hearing about? Is she older than you, or younger?
A: Erin Beatty is a wonderful woman best known for her grace and talent in performing 2 different (but equally thrilling) jobs: 1) Designer for SUNO clothing line, and 2) Sister to Piper Beatty, blog goddess extraordinaire. More to the point, Erin is kind, lovely, fun, smart, and incredibly poised under pressure. She has more than once kept my entire family sane and she has great fashion sense. She also once thought the Dire Straits were singing "Money for nothing and your checks for free," which I believe shows her many hidden talents as a lyricist and/or advertising jingle writer. She is slightly less than 3 years older than I am, and is the world's best sister. I am definitely the president of her (very large) fan club.

Oh, yeah, and it's also her birthday today. Happy birthday, Erin!!

And there you have it: more about me, my dog, and my family than you could ever want, need, or even imagine. On the other hand, if any of you DO still have questions (about anything), please feel free to send them over to the blog email (matteroflifeandbreath@gmail.com -- note that there is NO "a"). I don't promise to have all the answers, but I promise to give you my version of them, and that's the best I (or maybe any of us) can do.

Much love, beautiful people.