When I was about 12 my mother, who at the time was the dean of a graduate school in Colorado, had a faculty member who also happened to be an astronaut in his spare time. (I guess you could call it moonlighting....ba, dum, bah!) Anyway, bad puns aside, I thought this was pretty cool because 1) I had never met an actual astronaut before and was forever intrigued by the idea of freeze-dried ice cream, and 2) her association with this particular astronaut meant that my family was invited down to Florida to watch the shuttle launch when he was sent up to the International Space Station. A trip to Florida to watch the shuttle launch, by the way, gets you waaaay more street cred in elementary school than your run-of-the-mill visit to Mickey. This was the big time, and in my head it was going to be replete with visits to the "cockpit" (do shuttles have cockpits?) and time spent in one of those zero gravity spinning things you used to see on ads for Space Camp. I was, to put it mildly, super stoked at the prospect.
The launch was a night launch, which is both rare and spectacularly beautiful. We huddled on bleachers in the middle of some very uninhabited strip of land/dust, with the lights of the launching station spotlighting the shuttle in the distance. We weren't close by any stretch -- at least a mile away, I would guess, if not more -- and we had to get there early, so for the first hour or so all I really remember was a sense of being uncomfortable and bored. I was excited, sure, but I was also a pre-teen sitting with my parents in the Florida wilderness before the age of texting and cell phones and with nary a spinning zero-gravity ride in sight. I was, truth be told, kind of over it.
Over it, that is, until the countdown clock hit about 5 minutes to liftoff. At that point I swear I felt a tingle go through my entire body. I sat up straighter, I looked off into the distance at the lights surrounding the shuttle. I imagined the astronauts -- a crew of 5, including two women I had seen the day before at a panel -- strapping themselves into their chairs and straining their eyes for a last look at the family and loved ones seated with us in the distance. I even considered the name of the shuttle, The Atlantis, and its implications of worlds lost and the constant quest for hidden treasures. I stayed lost in these thoughts for about 4 minutes and 30 seconds, and then I joined the crowd in counting down toward the release of that vessel into the universe, full of the hope, joy, fear, light, and sheer anticipation of our collective human desire to live and to learn and to discover new wonders.
It is now T minus 11 hours before I, having finally finished my last round of inhaled and oral treatment for RSV, will be released back into my own little bustling universe of New York City. And though I can't claim a goal quite as lofty as those of the astronauts I watched so long ago, I have to admit that my skin is once again tingling with anticipation at the simple thought of making my way through the night and the snow that falls like so many stars to my family, my friends, my puppy, and my life.
I am so beyond grateful.
The nurses, staff, and doctors here are too amazing for words. I felt so cared for and looked after, which (while I may occasionally complain about all the interruptions) is something I am unbelievably thankful for. The care I get at my hospital is aggressive, compassionate, and even occasionally mixed in with a healthy dose of good fun and humor. I truly hope never to take that for granted.
That said, I am ready for liftoff. The past 8 days in here have felt somewhat dreamlike both in their intensity and in their timeless, floaty quality. The drugs they've had me on in here mess with my senses, to the extent that I can't even really feel my own body (case in point: this morning I bit my tongue due to numbness, and it's hard to type because my fingers can't feel the keys). For the past 5 days I've also been behind double doors, removed from the normal sounds off the hospital and unable to see my visitors, who must enter my room looking frankly ridiculous in paper gowns, orange masks (sometimes with plastic eye visors on them), and latex gloves. When I checked in here I was texting back and forth with a friend who I will never text with again, and that is the most unreal part of all. But somehow or another, like floating through space, time still managed to pass, and now I'm just a short while away from my own night launch. And happy as I am that I have such a wonderful hospital and dedicated team, that moment honestly can't come soon enough. Once again I am over the boring part and ready to skip ahead to the action, please.
So I'm officially commencing the countdown -- and I hope to see you all out there among the stars.
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
Wednesday, January 26, 2011
Sunday, January 23, 2011
Writ On Water
I was 19 years old and a sophomore in college when I first "discovered" poetry. I had, of course, read poems before -- I even had a few go-to verses and a budding obsession with TS Eliot that had taken root the first time my dad handed me a copy of "The Book of Practical Cats" -- but I was still, as a general rule, not someone you might expect to find sitting under a tree with a volume of Shelley or draped over some basement couch with the beat poets. I preferred stories, like with plots and characters and all that silly stuff, and I was loath to tackle any poem longer than two or three stanzas as a general rule. Poetry was, to put it mildly, my road less traveled.
Dramatic as it sounds, all that changed instantly the moment I walked through the door of my Romantic Poetry Seminar and cracked open that first page of John Keats. Two lines into A Song of Opposites I went from a skeptical student to a dedicated disciple. Shelley, Byron, Wordsworth, Coleridge, Blake: I loved all of them wildly, but my heart still belonged to that young English poet who so famously penned the words "Beauty is truth, truth beauty -- that is all/ Ye know on earth, and all ye need to know." (Ode on a Grecian Urn)
A few years later, when I visited Rome, I made a point of stopping by Keats' apartment, which he shared with the Shelleys (Mary and Percy, both of course famous in their own rights). This is also the place where Keats ultimately died -- after his entire family died of TB and he himself also caught it, he came to Italy for the air, which was thought to be better than the cold, wet British climate. Keats passed away at age 26 after a far-too-short career and a far-too-long battle with chronic respiratory illness, from which he knew he would eventually die. I consider this to be a great loss, not only for the genius of his art, but for the fact that he was both brave enough to keep writing in the face of his own pain and even death, and scared enough to let that shine through in his poems. He was honest and playful, and he created beauty out of an extremely painful truth, all of which led me to leave his apartment and make a special pilgrimage to his gravesite in the Protestant Cemetery not far away. And it was there that I first read these words:
Here Lies One Whose Name Was Writ On Water.
Keats wrote this himself, and asked for it to be placed on his gravestone. I won't get into the interpretations of this by historians or literature scholars (which are varied), nor the additional words added by Keats' friends after his death. What I will say is that these words struck me extremely hard as a person, as a poet (or, at the very least, a poetry reader), and as a patient. To think that this young man, so careful and talented with words, chose to leave on his grave a personal message of impermanence, of the fleeting nature of life and the return to the same glossy surface when we're done, is almost unbearably sad. To think that he found such a gorgeous image to express his heartache and that he made not only his art, but also his life and even his gravestone a poem is beyond inspiring. Even tragedy has its sparkle.
Alas, I am not John Keats, and I can find no such lyrics for my own sense of loss this weekend. Two gorgeous souls, one of whom I was honored and blessed to call a very close personal friend and both of whom were a huge part of my life here in NY and at my transplant center, have moved on from this life into whatever comes next. They were also close friends, and I truly hope that they are together now laughing and taking silly pictures. Tina and Tom, you were and are two of the most beautiful souls I have ever had the privilege of knowing. I will miss your wit, your love, your sarcasm, your funny faces, and your insights. Thank you for the cupcakes, and the laughter, and really amazing conversations. I love you always.
And as I look out now over the lights reflected in the Hudson River, I know that we may all very well be simply "writ on water," but that doesn't make us shine any less brightly.
Dramatic as it sounds, all that changed instantly the moment I walked through the door of my Romantic Poetry Seminar and cracked open that first page of John Keats. Two lines into A Song of Opposites I went from a skeptical student to a dedicated disciple. Shelley, Byron, Wordsworth, Coleridge, Blake: I loved all of them wildly, but my heart still belonged to that young English poet who so famously penned the words "Beauty is truth, truth beauty -- that is all/ Ye know on earth, and all ye need to know." (Ode on a Grecian Urn)
A few years later, when I visited Rome, I made a point of stopping by Keats' apartment, which he shared with the Shelleys (Mary and Percy, both of course famous in their own rights). This is also the place where Keats ultimately died -- after his entire family died of TB and he himself also caught it, he came to Italy for the air, which was thought to be better than the cold, wet British climate. Keats passed away at age 26 after a far-too-short career and a far-too-long battle with chronic respiratory illness, from which he knew he would eventually die. I consider this to be a great loss, not only for the genius of his art, but for the fact that he was both brave enough to keep writing in the face of his own pain and even death, and scared enough to let that shine through in his poems. He was honest and playful, and he created beauty out of an extremely painful truth, all of which led me to leave his apartment and make a special pilgrimage to his gravesite in the Protestant Cemetery not far away. And it was there that I first read these words:
Here Lies One Whose Name Was Writ On Water.
Keats wrote this himself, and asked for it to be placed on his gravestone. I won't get into the interpretations of this by historians or literature scholars (which are varied), nor the additional words added by Keats' friends after his death. What I will say is that these words struck me extremely hard as a person, as a poet (or, at the very least, a poetry reader), and as a patient. To think that this young man, so careful and talented with words, chose to leave on his grave a personal message of impermanence, of the fleeting nature of life and the return to the same glossy surface when we're done, is almost unbearably sad. To think that he found such a gorgeous image to express his heartache and that he made not only his art, but also his life and even his gravestone a poem is beyond inspiring. Even tragedy has its sparkle.
Alas, I am not John Keats, and I can find no such lyrics for my own sense of loss this weekend. Two gorgeous souls, one of whom I was honored and blessed to call a very close personal friend and both of whom were a huge part of my life here in NY and at my transplant center, have moved on from this life into whatever comes next. They were also close friends, and I truly hope that they are together now laughing and taking silly pictures. Tina and Tom, you were and are two of the most beautiful souls I have ever had the privilege of knowing. I will miss your wit, your love, your sarcasm, your funny faces, and your insights. Thank you for the cupcakes, and the laughter, and really amazing conversations. I love you always.
And as I look out now over the lights reflected in the Hudson River, I know that we may all very well be simply "writ on water," but that doesn't make us shine any less brightly.
Saturday, January 22, 2011
Really Silly Verses
There once was a room by the highway
With views of the New Jersey skyway.
It came with double doors
And was up seven floors
In a bustling hospital hallway.
And those two doors were there for a reason
Having to do with the season.
'Cause in winter, you see
One might catch RSV
And end up with coughing and wheezin'.
Which fact is the point of this story
Without getting overly gory,
There are bugs in my nose
But that's just how life goes,
And I don't want my breathheads to worry.
I'm not happy, it goes without saying,
About how these cards have been laying.
I try to understand
This is part of the plan
Of this wonderful game we're all playing.
There are drugs, there are fears, there are times when
It feels like you simply cannot win.
But for now there are lights
From New York City nights
And tomorrow we're blessed to try again.
With views of the New Jersey skyway.
It came with double doors
And was up seven floors
In a bustling hospital hallway.
And those two doors were there for a reason
Having to do with the season.
'Cause in winter, you see
One might catch RSV
And end up with coughing and wheezin'.
Which fact is the point of this story
Without getting overly gory,
There are bugs in my nose
But that's just how life goes,
And I don't want my breathheads to worry.
I'm not happy, it goes without saying,
About how these cards have been laying.
I try to understand
This is part of the plan
Of this wonderful game we're all playing.
There are drugs, there are fears, there are times when
It feels like you simply cannot win.
But for now there are lights
From New York City nights
And tomorrow we're blessed to try again.
Thursday, January 20, 2011
Balance It Out
Well, hello there, beautiful breathheads:
I'm writing this afternoon from my room on the 7th floor transplant ward of my hospital. My view is pretty darn cool, if I do say so myself, as my window looks right out over the Hudson River, The Empire State Building, and all those beautiful lights that make New York City's skyline so breathtaking. Oh wait, I'm sorry, where are my manners? Would you like to see it, too?
Amazing, right?
Unfortunately, though, my other view is slightly less...appetizing? I can, for example, see my body, which is currently sporting not one, not two, but...wait for it...three separate site for IV access: two peripherals and my port. I can also see the number of IV bags hanging from my pole, and I can honestly say that never have I seen so many in one place feeding into my body at the same time other than my time in the ICU immediately post-transplant. I can see the many doctors who keep walking through my door, and I can see the clock on my wall counting down the minutes until my next dose of cephapine, to which I am allergic. Oh, yeah, and I can see this:
I don't care what anyone says, peas and carrots are not supposed to be neon.
Aside from the food and the lock-up situation, though, things are going pretty smoothly over here. I was admitted directly from my bronch this past Tuesday after my doctor found continued secretions in my gorgeous new lungs. He's the "better safe than sorry" type (good find in a doctor, by the way), so he decided to pull me in here for a good old-fashioned dose of in-house medicine. This was actually tossed around as an option last week and I had time to prepare. I'm not pleased about it, to say the least, but I am accepting of it, which is a big first step. And after all, I want to do right by these beautiful breathers -- they (and I) deserve nothing less. The plan right now is to do a course of one very strong IV antibiotic called polymyxin B; do a normal course of IV levaquin, mycofungin, and oral minocycline; desensitize me to another option for use now and in the future as needed (heeeello cephalosporins! Oh, how I missed you and your thrilling scent of cat pee!); and check out if there's any rejection since I've had a couple of episodes since my surgery. Oh, and we're gonna throw in some sinus exams/consults and vascular treatment, just for laughs. We're funny like that, I guess.
So I'm in here, and I'm looking out at my twinkling city and I am, of course, super bored because that's how things roll at the hospital, and I find myself sort of leaning into the view -- as if my body just wants to leap out the window and fly down through that mass of steel and water and sky and humanity. Because it does. I suddenly realize that I am aching to get out of here. I am literally tingling with the thought of being allowed something as simple as the chance to walk down my silly little street in the West Village again. I am, in a word, desperate. It's not an uncommon feeling for me because I absolutely hate being "sick" and will do anything to avoid places that make me feel that way, but in this case I'm on a drug that they just won't let me start at home. I feel fine, all things considered, but I'm not allowed to leave.
Polymyxin as a drug is well-known for its evil side effect profile, one of the big ones being that it is nuero-toxic. Patients can experience this effect in different and diverse ways, but for me it's always been a tingly, numb-like feeling in my face and hands and a more or less destroyed sense of balance. And as those who know or have ever met me in person can attest, I am not particularly graceful to begin with, so any loss in this department is a huge step down in my ability to perform such complicated feats as walking or, well, writing this blog. And right now, that stuff is hard. It's really, really hard, as a matter of fact.
When I lose my sense of balance, I feel unsteady, awkward, and unproductive. I feel confined right now, quite literally insofar as I am in a specific ward on a specific floor of a specific hospital and can't leave -- I can't even take a long walk for fear of falling into some poor kidney recipient or whatnot. I can't shake these infections either, even post-transplant, and that makes me feel even more off-kilter. And so I find myself here, leaning into my window, staring out at the city and the life I adore from behind the glass of the life that keeps me going, but threatens to drive me crazy in the process. It's a familiar sensation to me, as I remember doing the exact same thing from Denver Children's Hospital when I was 15. I can't seem to check into this place, either mentally or physically, without feeling a sense of loss and desire. I just want to be done with this part of the production and on to whatever comes next.
But I can't be totally free, obviously, and I can't wish away CF or transplant or any of their nasty little siblings. I can't change what's already happened and I can't (or rather, I don't want to) sit around and worry and squander the moments when I could be out showing these lungs a good time. I can't bear the thought of cheating myself out of any more time. Period.
And so I have to choose balance, by necessity. For me it means knowing when to push my doctors for more in the life/freedom department and when to back off and trust their judgment in the health/lung part of the deal. Truth be told, I want both a long and a happy life, and I'm not willing to compromise much on either. So I have to learn how to walk this tightrope, even if it does sometimes land me with my nose against a frosty windowsill. The alternative on either side to me would mean giving in to my disease: either by being stubborn and allowing it to take my health and good judgment from me or by being too scared and allowing it to take my spirit. I can't (and I won't) let either of those things happen if I have any say about it.
I haven't yet found the perfect combination, and I seriously doubt I ever will get it exactly right. After all, I am alive, and that makes me prone to mistakes. But tonight, in my cozy, lonely, familiar hospital room looking out over my huge, crowded, exciting city I know that I am the consummate balancing act between these two worlds. And it doesn't feel bad at all.
Well, aside from the food, of course.
xoxo,
Piper
I'm writing this afternoon from my room on the 7th floor transplant ward of my hospital. My view is pretty darn cool, if I do say so myself, as my window looks right out over the Hudson River, The Empire State Building, and all those beautiful lights that make New York City's skyline so breathtaking. Oh wait, I'm sorry, where are my manners? Would you like to see it, too?
Amazing, right?
Unfortunately, though, my other view is slightly less...appetizing? I can, for example, see my body, which is currently sporting not one, not two, but...wait for it...three separate site for IV access: two peripherals and my port. I can also see the number of IV bags hanging from my pole, and I can honestly say that never have I seen so many in one place feeding into my body at the same time other than my time in the ICU immediately post-transplant. I can see the many doctors who keep walking through my door, and I can see the clock on my wall counting down the minutes until my next dose of cephapine, to which I am allergic. Oh, yeah, and I can see this:
I don't care what anyone says, peas and carrots are not supposed to be neon.
Aside from the food and the lock-up situation, though, things are going pretty smoothly over here. I was admitted directly from my bronch this past Tuesday after my doctor found continued secretions in my gorgeous new lungs. He's the "better safe than sorry" type (good find in a doctor, by the way), so he decided to pull me in here for a good old-fashioned dose of in-house medicine. This was actually tossed around as an option last week and I had time to prepare. I'm not pleased about it, to say the least, but I am accepting of it, which is a big first step. And after all, I want to do right by these beautiful breathers -- they (and I) deserve nothing less. The plan right now is to do a course of one very strong IV antibiotic called polymyxin B; do a normal course of IV levaquin, mycofungin, and oral minocycline; desensitize me to another option for use now and in the future as needed (heeeello cephalosporins! Oh, how I missed you and your thrilling scent of cat pee!); and check out if there's any rejection since I've had a couple of episodes since my surgery. Oh, and we're gonna throw in some sinus exams/consults and vascular treatment, just for laughs. We're funny like that, I guess.
So I'm in here, and I'm looking out at my twinkling city and I am, of course, super bored because that's how things roll at the hospital, and I find myself sort of leaning into the view -- as if my body just wants to leap out the window and fly down through that mass of steel and water and sky and humanity. Because it does. I suddenly realize that I am aching to get out of here. I am literally tingling with the thought of being allowed something as simple as the chance to walk down my silly little street in the West Village again. I am, in a word, desperate. It's not an uncommon feeling for me because I absolutely hate being "sick" and will do anything to avoid places that make me feel that way, but in this case I'm on a drug that they just won't let me start at home. I feel fine, all things considered, but I'm not allowed to leave.
Polymyxin as a drug is well-known for its evil side effect profile, one of the big ones being that it is nuero-toxic. Patients can experience this effect in different and diverse ways, but for me it's always been a tingly, numb-like feeling in my face and hands and a more or less destroyed sense of balance. And as those who know or have ever met me in person can attest, I am not particularly graceful to begin with, so any loss in this department is a huge step down in my ability to perform such complicated feats as walking or, well, writing this blog. And right now, that stuff is hard. It's really, really hard, as a matter of fact.
When I lose my sense of balance, I feel unsteady, awkward, and unproductive. I feel confined right now, quite literally insofar as I am in a specific ward on a specific floor of a specific hospital and can't leave -- I can't even take a long walk for fear of falling into some poor kidney recipient or whatnot. I can't shake these infections either, even post-transplant, and that makes me feel even more off-kilter. And so I find myself here, leaning into my window, staring out at the city and the life I adore from behind the glass of the life that keeps me going, but threatens to drive me crazy in the process. It's a familiar sensation to me, as I remember doing the exact same thing from Denver Children's Hospital when I was 15. I can't seem to check into this place, either mentally or physically, without feeling a sense of loss and desire. I just want to be done with this part of the production and on to whatever comes next.
But I can't be totally free, obviously, and I can't wish away CF or transplant or any of their nasty little siblings. I can't change what's already happened and I can't (or rather, I don't want to) sit around and worry and squander the moments when I could be out showing these lungs a good time. I can't bear the thought of cheating myself out of any more time. Period.
And so I have to choose balance, by necessity. For me it means knowing when to push my doctors for more in the life/freedom department and when to back off and trust their judgment in the health/lung part of the deal. Truth be told, I want both a long and a happy life, and I'm not willing to compromise much on either. So I have to learn how to walk this tightrope, even if it does sometimes land me with my nose against a frosty windowsill. The alternative on either side to me would mean giving in to my disease: either by being stubborn and allowing it to take my health and good judgment from me or by being too scared and allowing it to take my spirit. I can't (and I won't) let either of those things happen if I have any say about it.
I haven't yet found the perfect combination, and I seriously doubt I ever will get it exactly right. After all, I am alive, and that makes me prone to mistakes. But tonight, in my cozy, lonely, familiar hospital room looking out over my huge, crowded, exciting city I know that I am the consummate balancing act between these two worlds. And it doesn't feel bad at all.
Well, aside from the food, of course.
xoxo,
Piper
Monday, January 17, 2011
Seven Months Down and Oh, What a Ride
When I was a little kid I had two rides that I really, really, REALLY loved. The first was The Pirates of the Caribbean at Disney World, which was popular with my family as it was the only ride that both my sister and I enjoyed. The second ride, on the other hand, was slightly less involved and didn't require a trip to Florida: namely, the tilt-a-whirl at a local Colorado amusement park.
And wow, did I ever LOVE that tilt-a-whirl. Honestly, I was such a fan that I would literally beg for days to visit the park, and I once jumped out of a moving vehicle in an attempt to get on the ride five minutes faster. Yes, it was stupid and dangerous, but it was also an act of pure, unadulterated love. I mean, this ride and I were like a match made in intentionally induced nausea heaven -- how could my parents expect me to wait until the car was safely in a designated parking space for that kind of fast-paced, dizzy, scream-your-guts-out (and I mean that all too often in the literal sense) joy?! Clearly, they could not.
Fast forward about 20 years to the present. There aren't a lot of tilt-a-whirls in New York City (Coney Island excepted), and if there are you probably aren't going to find them in the West Village. Good coffee and amazing shopping? Check. Old school amusement parks? Not so much. It's a bit of a bummer, but then I remember that I don't actually NEED to pay $5 and step right up to get that kind of excitement anymore. Why, you ask? Because I've had a double-lung transplant. I get it all for free.
(*Dear readers: obviously, transplants are not free. They are not even close to free, as a matter of fact. I'm quite certain that this transplant is the single most expensive thing I have ever "purchased" in my life, in more ways than one. Just ask anyone in Arizona. But for the purposes of this post, I mean "free" as in I don't pay any extra for the excitement part. That's just like the added gift with purchase -- much like the grey crewneck that apparently comes with every purchase of "Pajama Jeans." Seriously, look it up.)
I have to admit that I personally feel my life has gotten less dramatic in the 7 months I've been living with these lungs. At the very least I feel more stable -- mostly because I don't spend all my time worrying about when or if the other shoe is going to drop. I'm pretty secure right now in the thought that I am alive, and to the extent that I might not be alive in a few years or even months, well, I guess that's true for everyone, everywhere. I just don't have the energy left to worry about it all the time after having done it for so many years already.
But I will also acknowledge that, for me at least, the drama seems just a bit more disheartening right now than it did back then, because before at least I could explain it. I could say with certainty that I was sick because I had mucus clogging up my lungs, and said mucus was infected with several strains of nasty bacteria that were slowly wreaking their havoc. I could feel the symptoms of every new infection as they came on and I could make fairly educated choices after considering both my mental and physical needs. In other words, I knew what was happening and I understood why, so even though I was scared I was also, in some ways, empowered. I felt 100% confident asking my doctor about a new treatment option or asking if I could attempt an alternative to one of her suggestions, because I knew what the risks and benefits were to each approach.
The thing about these past 7 months is, I no longer truly understand my body. This is, of course, not entirely true because I still know how to recognize things like a cough or a virus or whatever else. But on another level, I feel pretty clueless. I rarely cough enough to feel concerned because, quite frankly, 7 months ago even my best day sounded like a trip to your local TB ward. Now my worst day involves a few minor coughing jags set in between other "normal" activities, and it just doesn't feel like that big of a deal. On the other hand, I'm becoming more and more aware that most of my friends post-transplant don't spend their first 7 months constantly on IVs. I'm starting to get a few curious souls asking why I seem to require such aggressive treatment, and my honest to goodness answer is: I don't know.
What I do know is pretty straightforward, though. I know I have some leftover CF pathogens (namely pseudo and some recurring fungus) in my sinuses and trachea and that these sometimes drip down into my lungs. I know I've cultured some new bugs since my transplant, most likely due to my weakened immune system. I know that at least a couple of these bugs are fairly resistant and that I have some additional issues with antibiotics (such as hearing loss from Tobra and just plain old allergies) that make selecting an effective combination difficult. I know that I am blessed beyond measure by a very proactive transplant center and a doctor who favors an aggressive approach to treatment, especially right after transplant. I know that 7 months later I FEEL fantastic -- I can exercise and play with my puppy and have fun with my friends and go to the gym and do (almost) everything I've wanted to do for so long -- but that apparently my clinical results are still finding the right balance. I know that I am still absolutely as stubborn and impatient as that hard-headed little girl who took a flying leap out of her parents' Jeep Cherokee and ended up sitting by herself on the pavement -- a little scraped up but ultimately no worse for the wear.
I know that this is not going to be what the rest of my life is like post-transplant. I know that.
So yes, I am 7 months and a couple of days out of transplant. Yes, I am still constantly on IVs and I still have my port-a-cath in my chest. Yes, I really do feel as good as I claim to pretty much every single day -- I wouldn't BS to you guys about that, I promise. Yes, I get frustrated but yes, I still really respect my docs and am grateful to be where I am in terms of long-term follow-up care. And yes, I would do it all over again in an instant, in the blink of an eyelash, in a heartbeat.
Or maybe just in a breath.
With love, light and seriously immeasurable gratitude,
The Girl Who Cannot Wait
And wow, did I ever LOVE that tilt-a-whirl. Honestly, I was such a fan that I would literally beg for days to visit the park, and I once jumped out of a moving vehicle in an attempt to get on the ride five minutes faster. Yes, it was stupid and dangerous, but it was also an act of pure, unadulterated love. I mean, this ride and I were like a match made in intentionally induced nausea heaven -- how could my parents expect me to wait until the car was safely in a designated parking space for that kind of fast-paced, dizzy, scream-your-guts-out (and I mean that all too often in the literal sense) joy?! Clearly, they could not.
Fast forward about 20 years to the present. There aren't a lot of tilt-a-whirls in New York City (Coney Island excepted), and if there are you probably aren't going to find them in the West Village. Good coffee and amazing shopping? Check. Old school amusement parks? Not so much. It's a bit of a bummer, but then I remember that I don't actually NEED to pay $5 and step right up to get that kind of excitement anymore. Why, you ask? Because I've had a double-lung transplant. I get it all for free.
(*Dear readers: obviously, transplants are not free. They are not even close to free, as a matter of fact. I'm quite certain that this transplant is the single most expensive thing I have ever "purchased" in my life, in more ways than one. Just ask anyone in Arizona. But for the purposes of this post, I mean "free" as in I don't pay any extra for the excitement part. That's just like the added gift with purchase -- much like the grey crewneck that apparently comes with every purchase of "Pajama Jeans." Seriously, look it up.)
I have to admit that I personally feel my life has gotten less dramatic in the 7 months I've been living with these lungs. At the very least I feel more stable -- mostly because I don't spend all my time worrying about when or if the other shoe is going to drop. I'm pretty secure right now in the thought that I am alive, and to the extent that I might not be alive in a few years or even months, well, I guess that's true for everyone, everywhere. I just don't have the energy left to worry about it all the time after having done it for so many years already.
But I will also acknowledge that, for me at least, the drama seems just a bit more disheartening right now than it did back then, because before at least I could explain it. I could say with certainty that I was sick because I had mucus clogging up my lungs, and said mucus was infected with several strains of nasty bacteria that were slowly wreaking their havoc. I could feel the symptoms of every new infection as they came on and I could make fairly educated choices after considering both my mental and physical needs. In other words, I knew what was happening and I understood why, so even though I was scared I was also, in some ways, empowered. I felt 100% confident asking my doctor about a new treatment option or asking if I could attempt an alternative to one of her suggestions, because I knew what the risks and benefits were to each approach.
The thing about these past 7 months is, I no longer truly understand my body. This is, of course, not entirely true because I still know how to recognize things like a cough or a virus or whatever else. But on another level, I feel pretty clueless. I rarely cough enough to feel concerned because, quite frankly, 7 months ago even my best day sounded like a trip to your local TB ward. Now my worst day involves a few minor coughing jags set in between other "normal" activities, and it just doesn't feel like that big of a deal. On the other hand, I'm becoming more and more aware that most of my friends post-transplant don't spend their first 7 months constantly on IVs. I'm starting to get a few curious souls asking why I seem to require such aggressive treatment, and my honest to goodness answer is: I don't know.
What I do know is pretty straightforward, though. I know I have some leftover CF pathogens (namely pseudo and some recurring fungus) in my sinuses and trachea and that these sometimes drip down into my lungs. I know I've cultured some new bugs since my transplant, most likely due to my weakened immune system. I know that at least a couple of these bugs are fairly resistant and that I have some additional issues with antibiotics (such as hearing loss from Tobra and just plain old allergies) that make selecting an effective combination difficult. I know that I am blessed beyond measure by a very proactive transplant center and a doctor who favors an aggressive approach to treatment, especially right after transplant. I know that 7 months later I FEEL fantastic -- I can exercise and play with my puppy and have fun with my friends and go to the gym and do (almost) everything I've wanted to do for so long -- but that apparently my clinical results are still finding the right balance. I know that I am still absolutely as stubborn and impatient as that hard-headed little girl who took a flying leap out of her parents' Jeep Cherokee and ended up sitting by herself on the pavement -- a little scraped up but ultimately no worse for the wear.
I know that this is not going to be what the rest of my life is like post-transplant. I know that.
So yes, I am 7 months and a couple of days out of transplant. Yes, I am still constantly on IVs and I still have my port-a-cath in my chest. Yes, I really do feel as good as I claim to pretty much every single day -- I wouldn't BS to you guys about that, I promise. Yes, I get frustrated but yes, I still really respect my docs and am grateful to be where I am in terms of long-term follow-up care. And yes, I would do it all over again in an instant, in the blink of an eyelash, in a heartbeat.
Or maybe just in a breath.
With love, light and seriously immeasurable gratitude,
The Girl Who Cannot Wait
Friday, January 7, 2011
Take Your Time
Don't you just love those moments/minutes/hours/days when you know you have something you want (or need) to say, but you have no idea how to actually express it? I'm sure you all know what I mean; it's that desperate feeling of being without the right words (or actions, or images, or whatever floats your individual boat) to get across the emotion you want to convey. It's a sense of being unable to communicate with those around you and therefore setting yourself up for misunderstanding or isolation. In short, it's what I imagine drowning must feel like -- or pretty darn close anyway.
Lucky for me, I don't find myself rendered speechless very often. This in and of itself is probably both a blessing and a curse (depending on who you ask), but it at the very least saves me the discomfort that goes along with unexpressed emotion. And in a world as intense as that of chronic illness, hospitals, and shortened life expectancies, being able to lay it all out there even if it seems melodramatic or overly intense is, quite frankly, not the worst flaw I could have inherited. (And yes, Daddy, I'm looking at you.)
But, like all rules, there are exceptions. I am, for example, not good at any conversation I perceive as overly needy. I'm not great at letting people know when they're frustrating me BEFORE the proverbial shit hits the fan. And I'm not a huge fan of dealing with things that I find super scary or truly, deeply uncomfortable. In those situations, I tend to turn either to humor or to simple avoidance. It's easier for me to do a very brief or generalized acknowledgment of something harsh than for me to really go the distance and express how bad or overwhelming the situation really is. And, this, unfortunately, is NOT the best trait to have inherited in terms of illness and life. In fact, it's something I really need to work on, and I plan to give it a solid effort in the year to come.
So here goes nothing, right? Or rather, here goes everything...
According to the banner at the top of this blog, I write about "Life, Lung Transplant, and Cystic Fibrosis...and Everything In Between." Quite honestly, though, I consider this blog about Life, more than anything -- it's just that "My Life" in particular, happens to involve a whole lot of CF with a hefty dose of transplant thrown in for good measure. Or at least that's the situation right now, and that was the impetus for starting this blog in the first place.
But the simple fact is that any blog about CF and lung transplant (and indeed about life, for that matter) also needs to include something that's not quite as fun as miraculous near-misses, great doctors, an abundance of expensive drugs that I feel privileged to use despite their side effects, and stories about lives reclaimed. And I honestly feel strongly that I would be remiss to head into 2011 without acknowledging that, and without sending out -- if only from a distance -- my support to the many members of our community who are facing the harsh reality of CF that, sadly, brings to a close all those other crazy beautiful miracles.
This all came to a head a few days ago, as I struggled valiantly with my move (read: fell into an infection-induced stupor on the floor of my new room while my mom sorted boxes and furniture). As part of the joys of moving, I was somewhat distracted and less involved in any and all things CF-related for a few days, something I generally consider good for my sanity anyway. Unfortunately, I was also less likely to email people within the community who wrote me through FaceBook or the blog. And I know that sort of thing happens, but it's not my favorite thing to have happen -- especially when someone emails me about her fears with getting listed for transplant and I know that I have to leave it for a few days. That just kind of sucks, even if it is inevitable from time to time.
What sucks more, though, is that when such a thing happens in the CF community, the person isn't always around when you finally get your act together. And the truly heartbreaking reality is that you might find yourself remembering a young woman who was amazingly brave in the face of failing health and other challenges, who looked incredibly cute in the pictures she took to document her fight (all wearing the lung shirt that you and your sister designed), and who had always been nothing short of an inspiration in her several previous emails to you. You might just find yourself sitting baffled at the computer, wondering how just a few days could make such a huge difference -- and knowing that there but for the grace of God go all of us when it comes to this deadly disease.
So please excuse that this post isn't a particularly happy one. Those moments still exist in this world, and I think it's super important to share them. Actually, truth be told, I think CFers are pretty remarkable in our collective determination to look on the bright side. And Summer, you were a perfect example of that. But as a self-proclaimed hippie and a woman of faith, I know you'd also agree that there is, no doubt, "a time to dance, a time to mourn...and a time to every purpose under Heaven."
And beyond it, as well.
Lucky for me, I don't find myself rendered speechless very often. This in and of itself is probably both a blessing and a curse (depending on who you ask), but it at the very least saves me the discomfort that goes along with unexpressed emotion. And in a world as intense as that of chronic illness, hospitals, and shortened life expectancies, being able to lay it all out there even if it seems melodramatic or overly intense is, quite frankly, not the worst flaw I could have inherited. (And yes, Daddy, I'm looking at you.)
But, like all rules, there are exceptions. I am, for example, not good at any conversation I perceive as overly needy. I'm not great at letting people know when they're frustrating me BEFORE the proverbial shit hits the fan. And I'm not a huge fan of dealing with things that I find super scary or truly, deeply uncomfortable. In those situations, I tend to turn either to humor or to simple avoidance. It's easier for me to do a very brief or generalized acknowledgment of something harsh than for me to really go the distance and express how bad or overwhelming the situation really is. And, this, unfortunately, is NOT the best trait to have inherited in terms of illness and life. In fact, it's something I really need to work on, and I plan to give it a solid effort in the year to come.
So here goes nothing, right? Or rather, here goes everything...
According to the banner at the top of this blog, I write about "Life, Lung Transplant, and Cystic Fibrosis...and Everything In Between." Quite honestly, though, I consider this blog about Life, more than anything -- it's just that "My Life" in particular, happens to involve a whole lot of CF with a hefty dose of transplant thrown in for good measure. Or at least that's the situation right now, and that was the impetus for starting this blog in the first place.
But the simple fact is that any blog about CF and lung transplant (and indeed about life, for that matter) also needs to include something that's not quite as fun as miraculous near-misses, great doctors, an abundance of expensive drugs that I feel privileged to use despite their side effects, and stories about lives reclaimed. And I honestly feel strongly that I would be remiss to head into 2011 without acknowledging that, and without sending out -- if only from a distance -- my support to the many members of our community who are facing the harsh reality of CF that, sadly, brings to a close all those other crazy beautiful miracles.
This all came to a head a few days ago, as I struggled valiantly with my move (read: fell into an infection-induced stupor on the floor of my new room while my mom sorted boxes and furniture). As part of the joys of moving, I was somewhat distracted and less involved in any and all things CF-related for a few days, something I generally consider good for my sanity anyway. Unfortunately, I was also less likely to email people within the community who wrote me through FaceBook or the blog. And I know that sort of thing happens, but it's not my favorite thing to have happen -- especially when someone emails me about her fears with getting listed for transplant and I know that I have to leave it for a few days. That just kind of sucks, even if it is inevitable from time to time.
What sucks more, though, is that when such a thing happens in the CF community, the person isn't always around when you finally get your act together. And the truly heartbreaking reality is that you might find yourself remembering a young woman who was amazingly brave in the face of failing health and other challenges, who looked incredibly cute in the pictures she took to document her fight (all wearing the lung shirt that you and your sister designed), and who had always been nothing short of an inspiration in her several previous emails to you. You might just find yourself sitting baffled at the computer, wondering how just a few days could make such a huge difference -- and knowing that there but for the grace of God go all of us when it comes to this deadly disease.
So please excuse that this post isn't a particularly happy one. Those moments still exist in this world, and I think it's super important to share them. Actually, truth be told, I think CFers are pretty remarkable in our collective determination to look on the bright side. And Summer, you were a perfect example of that. But as a self-proclaimed hippie and a woman of faith, I know you'd also agree that there is, no doubt, "a time to dance, a time to mourn...and a time to every purpose under Heaven."
And beyond it, as well.
Saturday, January 1, 2011
A Tale of Two Years (and Four Lungs)
Dear 2011,
Well, hello there.
Okay, so I have to be honest: I am SUPER excited to "meet" you. Seriously. I think I can honestly say that I have never been more thrilled to ring in a new year -- even 2000, which was, of course, thrilling in actual celebration and important for me personally in that it was the year I graduated high school and spread my wings, so to speak. And please, don't get me wrong. I've had some fantastic years in my life -- many of which I look back on now with total awe that I could ever deserve to be so blessed or so lucky -- but 2011, I'm 100% sincere when I say that you have all the potential in the world to take home the big prize. You are, to put it mildly, potential personified. And for that reason alone, darling new year, I am extremely thrilled to welcome you into my life.
Of course, your predecessor was pretty darn impressive in its own right, obviously. I mean, how many years come complete with a brand new set of organs? (Important sidenote: please don't take that statement as a challenge, future years. I really think I'll hang onto what I've got for now if it's all the same to you.) It's undeniable that 2010 was about as "landmark" as they come, and that it was filled with joy, sorrow, hope, fear, laughter, tears, and miracles beyond my wildest dreams. For that, at least, I hope 2010 knows that I am forever and truly grateful.
In some ways, of course, it's always hard to separate the worst moments in your life from the best. By which I mean that true joy often stems from hard lessons, or from overcoming tragic circumstances -- at least that's quite often been my experience. And by that measurement, no doubt, 2010 was pretty much as awesome as they come, itself a fact made clear for me when I spend time rereading parts of this blog, or just revisiting memories. I laugh out loud pretty much every time I read those awesome comments you left me during my stay in the ICU, for example, and I smile to know that people from all across the country and even the world were lifting up their hearts in prayer, love, and celebration right along with my family. Wowza. No, seriously. Wowza, in every sense of the (very made-up) word.
Charles Dickens started out one of his most famous novels with the words now dreaded by high school English students the country over: "It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way . . ."
I'm pretty sure Dickens might have been waiting for transplant when he wrote that passage.
Okay, fine, so maybe not. But the point still stands that difficult moments in life have a strange habit of bringing people together, showing us what's important, and teaching us lessons that might scare us in the moment, but at the very least have the potential for some pretty interesting stories (or blog posts) down the road.
Although I have to say that if 2010 was both the best of times and the worst of the times, then I think I'll settle for 2011 just being pretty darn good in its own right. I'll gladly accept a few less life-changing lessons and brilliant surges of pure delight if I can also, in turn, cut down on the sleepless night full of worry and the scared looks I saw on way too many faces in 2010. I know I have a lot more to learn, and I promise I'm excited to get there, but for right now I think I'd be okay making those discoveries under just slightly less difficult circumstances, 2011 -- that is, if that's okay with you, of course.
Of course, my New Year's wish for all my beautiful friends out there is similar, though not, it goes without saying, exactly the same. I wish the best of times (always), I wish you harder times (when necessary), and above all I wish you excitement, joy, wonder, and discovery through each and every second of this magical experience that we call life. And when it all seems just a tad bit overwhelming, then I wish you, as Dickens might say, a true "spring of hope." And maybe, if we all get really lucky, a few more seasons as well.
With love, gratitude, and some serious excitement for the year to come,
xoxo beautiful people,
Piper
Well, hello there.
Okay, so I have to be honest: I am SUPER excited to "meet" you. Seriously. I think I can honestly say that I have never been more thrilled to ring in a new year -- even 2000, which was, of course, thrilling in actual celebration and important for me personally in that it was the year I graduated high school and spread my wings, so to speak. And please, don't get me wrong. I've had some fantastic years in my life -- many of which I look back on now with total awe that I could ever deserve to be so blessed or so lucky -- but 2011, I'm 100% sincere when I say that you have all the potential in the world to take home the big prize. You are, to put it mildly, potential personified. And for that reason alone, darling new year, I am extremely thrilled to welcome you into my life.
Of course, your predecessor was pretty darn impressive in its own right, obviously. I mean, how many years come complete with a brand new set of organs? (Important sidenote: please don't take that statement as a challenge, future years. I really think I'll hang onto what I've got for now if it's all the same to you.) It's undeniable that 2010 was about as "landmark" as they come, and that it was filled with joy, sorrow, hope, fear, laughter, tears, and miracles beyond my wildest dreams. For that, at least, I hope 2010 knows that I am forever and truly grateful.
In some ways, of course, it's always hard to separate the worst moments in your life from the best. By which I mean that true joy often stems from hard lessons, or from overcoming tragic circumstances -- at least that's quite often been my experience. And by that measurement, no doubt, 2010 was pretty much as awesome as they come, itself a fact made clear for me when I spend time rereading parts of this blog, or just revisiting memories. I laugh out loud pretty much every time I read those awesome comments you left me during my stay in the ICU, for example, and I smile to know that people from all across the country and even the world were lifting up their hearts in prayer, love, and celebration right along with my family. Wowza. No, seriously. Wowza, in every sense of the (very made-up) word.
Charles Dickens started out one of his most famous novels with the words now dreaded by high school English students the country over: "It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way . . ."
I'm pretty sure Dickens might have been waiting for transplant when he wrote that passage.
Okay, fine, so maybe not. But the point still stands that difficult moments in life have a strange habit of bringing people together, showing us what's important, and teaching us lessons that might scare us in the moment, but at the very least have the potential for some pretty interesting stories (or blog posts) down the road.
Although I have to say that if 2010 was both the best of times and the worst of the times, then I think I'll settle for 2011 just being pretty darn good in its own right. I'll gladly accept a few less life-changing lessons and brilliant surges of pure delight if I can also, in turn, cut down on the sleepless night full of worry and the scared looks I saw on way too many faces in 2010. I know I have a lot more to learn, and I promise I'm excited to get there, but for right now I think I'd be okay making those discoveries under just slightly less difficult circumstances, 2011 -- that is, if that's okay with you, of course.
Of course, my New Year's wish for all my beautiful friends out there is similar, though not, it goes without saying, exactly the same. I wish the best of times (always), I wish you harder times (when necessary), and above all I wish you excitement, joy, wonder, and discovery through each and every second of this magical experience that we call life. And when it all seems just a tad bit overwhelming, then I wish you, as Dickens might say, a true "spring of hope." And maybe, if we all get really lucky, a few more seasons as well.
With love, gratitude, and some serious excitement for the year to come,
xoxo beautiful people,
Piper
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