I feel like for the last week or so, ever since getting news that "we're number 1!" (sorry, I just can't resist the urge to make that into a little cheer every time I type it), I've been having these kind of slow-motion moments when I suddenly look around and think "wow, this could be the final time I do ____ with my 'old' CF lungs." I know that sounds kind of weird, but to be totally and completely honest the prospect of removing one of my most vital organs and replacing them with the lungs of another is a pretty weird concept, so bear with me if I get a little sentimental.
Yep, sentimental. Or maybe nostalgic is the word I'm looking for here. Because the thing is, I love my lungs. I don't particularly love the whole CF part, obviously, but I love that these amazing bags of tissue have managed to fight this hard for so long. I love that they're still breathing, still giving me enough rich oxygen to enjoy the holidays and my birthday. And if they need a little help every now and then, well, who can hold that against them really? Because these are the lungs I was born with, the lungs that saw me through so many horse-show summers and ski-weekend winters, the lungs that held their breath in that crucial moment before my first kiss and the lungs that fueled my celebratory cheers when I graduated. These lungs have been my heroes, my sometimes silent companions, and the bane of my existence at various times, but the point is that they're my original lungs, and it's hard for me to fathom sometimes letting them go.
Last night I stopped IVs. I was scheduled to stop this morning, but the peripheral infiltrated and it wasn't worth calling out a homecare nurse and starting another for one dose, so instead I simply called the game and pronounced myself (and my lungs) the winners yet again. A little over three weeks of hardcore antibiotics (our 7th course this year, but who's counting?) and we're back on top of our game -- able to do most resting activities without supplemental O2 and hitting the gym/gyrotonics like nobody's business. So it was time to stop the drugs, and as usual I couldn't have been more thrilled about it all. My mom and I carefully washed our hands with sterile soap, peeled back the tegaderm, and with a quick deep breath, pulled out the peripheral catheter and voila -- my arm was IV free. It's a ritual I've repeated over and over throughout the years, and it never stops feeling pretty darn amazing, as I'm sure you all know.
But as I stared down at my naked wrist, still red and a little raw from the infiltration and the dressing, it suddenly dawned on me that this might very well have been the final "tune-up" for my CF lungs. Kind of a heady realization, when you think about the fact that I've been enduring these pokes and lines and "wow, did I just get hit by a truck?" side effects for no less than 28 years. And yes, of course I realize that I'll be back on IVs off and on after transplant (hopefully more off than on), but the knowledge that these lungs (my lungs) might never again have to endure a course of Merrem or Tobra. Well, it was just kind of a "wow" moment, to put it lightly. Kind of like the other day when I realized after clinic that, unless I come back there earlier than my usual 3-4 weeks or so after IVs, I might also have had my final visit to the CF clinic as I know it. And again, of course I'll be back there occasionally after transplant. I'll still have CF -- I know that -- but my lungs won't have it, my CF doctor will no longer be my primary care pulmonolgist, and therefore it will all be different in some ways, even if parts of it will stay more or less the same.
I guess change always brings with it some sense of loss and nostalgia, even the most positive ones. Graduating law school is a great example -- I was so ready to be out of there, and yet at the same time I couldn't help looking around during those final moments on the Columbia quad and thinking "I may very well never see some of these all-too-familiar faces again." And I realized that, sure, there were parts of law school that I wouldn't miss much at all (Socratic Method, anyone?), but there were also parts that I would be kind of sad to let go. Little things, even, like just the simple routine of having familiar faces in the hallway and knowing how to find my way around the building. All those known, understood, and comfortable daily rituals that, however annoying they seemed at the time, made life just a little more predictable, a little bit safer. And I knew, of course, that I would make new friends and learn my way around new hallways at work. That was never a question, but it was still a change. And it was still a little scary.
I don't preach on this blog because it's not my calling and it's not my style, but I think I've been open enough at this point to say that I do believe in a higher plan. I believe that all of us are made from the same amazing universal light, and guided by a divine hand. Because of this belief, I know that there are perfect lungs out there for me. I feel strongly that they will come at the right time, and that they will be a blessing beyond measure -- a perfect gift from one child of God and the universe to another. But this doesn't mean that I expect my new lungs to replace my current ones. No lungs, no matter how perfect, could ever in my mind replace my CF lungs, because no lungs can go back with me and relive all those wonderful (and maybe even not-so-wonderful) moments of my life thus far. My new lungs and I will have new experiences, no doubt some of them amazing and wonderful and beyond my wildest dreams, but they will be new, framed by a different backdrop, and maybe sometimes slightly confusing. And that's okay, honestly. I've faced change before, and I've come out on the other side stronger and still myself. I fully expect to do it again.
So as I glance once again at my recovering IV site this morning, I'm still awash with feelings of awe and, yes, a little nostalgia for the CF lungs I might soon be giving up. But I also can't silence that other little voice in my head, the one that's been growing stronger and louder lately, and that simply seems to say over and over again: "This is okay. I'm ready. When the time is right, I'll be willing to let go of what's known and embrace the new. I'm ready."
And that is, by far, the biggest change of all.
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, November 25, 2009
Tuesday, November 24, 2009
Love Among the Lotus Flowers
5 months ago, I fell in love. I didn't expect it to happen, in fact it was probably the last thing I would have anticipated as I stood in the center of that large, hot, and dusty pottery factory somewhere in Cappadocia, Turkey, watching my mother, father, and sister haggle over some large jugs and decorative bowls. The owner of the factory, a kindly looking older man with an impish smile, seemed all too happy to discuss the various deals he could make, and cup after cup of the region's famous apple tea was brought out as the bargaining continued. Having reached my personal limit for hot beverages served despite the 100+ degree heat, and knowing that I was of little use in figuring out the best price for my mother's new living room decorations, I wandered from the group and made my way over to a smaller, shadier, and (I hoped) cooler room off to the side of the main showroom. At the very least, I figured my exit would allow me to avoid having to "politely decline" any more steaming cups of liquid heat, especially since, when it comes to tea, I was fast learning that the Turks don't really take no for an answer.
I stepped into the dimly lit room and immediately noticed that it was filled, floor to ceiling, with decorative plates hanging on the walls. These plates were in stark contrast to the larger platters displayed out in the main room -- all were vividly painted in rich colors, measuring about 12 inches across, and designed using a concentric circle motif. Intrigued (and relieved by the blessedly cool air in the room), I moved forward and stared up at one of the covered walls. Immediately I noticed that many of the plates appeared to be telling a story, which radiated out from the center of the plate and followed the circles until the outside edge. I also noticed that several of the plates seemed to have the same pattern painted on them (all by hand, I knew, since we had toured the factory prior to entering the showroom), albeit each in a different set of bright, carefully chosen colors. And then, halfway up the second wall and a little to the right, I saw it. And it was an instant, deep, and totally true love.
I knew I had to have the plate right away. The prices were marked on the back of the objects, but of course I knew from my parents' ongoing discussion with the owner in the next room that such things were wholly negotiable. Never mind that, though, I was determined to make this plate my own. As I reached for it and carefully removed it from its place amongst the others, I wasn't even sure why I was so drawn to this particular piece. The simple answer, of course, is that I've always had what my friends in college used to jokingly call an "inner raccoon", meaning that I tend to gravitate strongly towards things that are bright, shiny, and most of all colorful. The plate, of course, was all three of these things, and absolutely gorgeous to boot (trust me, the above picture doesn't even do it justice), but then again so were half the other things in that room, and none of them had made me whip out my credit card yet. I couldn't really articulate why I loved the thing, in other words, but I knew that I did, and that was enough reason for me to take the plate, turn, and rejoin the main room, the empty spot on the wall behind me a glaring testament to my refusal to separate myself from my plate for even a second longer.
As I re-entered the main room, my parents and the shopkeeper were just finishing their final cups of tea, having successfully arranged the purchase of not only their own jugs, but also a large serving platter for my sister (although in all fairness, I believe it was my sister who got the deal pushed through in the end -- the shopkeeper was very much interested in making sure the "lovely young lady" left happy). The old man, having secured his sale, turned towards me and his face lit up as he noticed the plate still clutched protectively to my chest. "Ah, the family print," he sighed, a reference to the fact that this particular plate held the concentric circle markings of his own family, the founders of the pottery mill and craftsmen for several generations. It was this pattern that I had seen repeated so often on other plates hanging in the room, though not in the brilliant reds, golds, and blues that made my plate so special. He scurried over to me and took the plate from my fingers, carefully tracing its textured surface with his own. "See here," he explained, "the central flower in the middle of the plate is the lotus blossom. A sign, in our tradition, of creation and perseverance, as this flower grows out of the mud from the bottom of the pond and emerges into the light above the water as a full and beautiful bloom." He paused and seemed to think for a moment before he added, "also, we say, it is a symbol of rebirth and new starts. The lotus folds itself away each night, disappearing beneath the surface to emerge again with the dawn." He broke out into a wide grin as I breathlessly whispered "perfect."
I didn't get much of a bargain for my lotus flower, especially when compared to the amazing deal orchestrated by the rest of my family in my absence. Maybe it was my refusal to sit down and drink another pot worth of scalding-hot tea, or the whiteness of my knuckles around the plate as I emerged from the dark room, or maybe it was something as simple as the way I held my breath as he described the plate's symbolism and the life-cycle of the lotus flower. Most likely it was my simple response, "perfect", that really did me in, although to be honest it really doesn't matter. I would have paid more for the plate, if I'd had to, and as it was the folded bills of Turkish Lira that I handed over seemed a weak offering for such a beautiful thing. It's amazing how money pales in the face of true love, after all.
5 months later I still look at the plate almost daily. I haven't yet hung it in my apartment, in fact, because I never could decide on the best place for something I love that much. Instead it sits on my kitchen counter, sometimes holding a couple pieces of fruit or some other object, but mostly just sitting there -- its open blossom a visible reminder of life, perseverance, and rebirth. And crazy as it sounds, there are moments when I just stand and stare at it, letting its color wash over me, and returning to the intense feeling of joy and rightness that I felt that first time I spotted the plate on a poorly-lit wall in a side room of a tiny pottery factory.
Today I tried my hand at recreating the bloom that I love so much on paper. It is, obviously, imperfect, but I wanted to try in honor of my friend (and many of yours also) who is living her last days in joy and peace right now down in Texas. She is, to me, an amazing example of rising up from the mud, growing through that dense water, and emerging above the surface as the most beautiful of blossoms. And although she might disappear again beneath the waters soon, I know she will continue to bloom in so many ways. So I'm dedicating this very humble effort to Courtney and her family, and to everyone awaiting a rebirth or transformation, as a reminder that what comes from mud can be beautiful, and that what at first seems delicate might be, in fact, the very picture of strength and what it means to persevere.
I stepped into the dimly lit room and immediately noticed that it was filled, floor to ceiling, with decorative plates hanging on the walls. These plates were in stark contrast to the larger platters displayed out in the main room -- all were vividly painted in rich colors, measuring about 12 inches across, and designed using a concentric circle motif. Intrigued (and relieved by the blessedly cool air in the room), I moved forward and stared up at one of the covered walls. Immediately I noticed that many of the plates appeared to be telling a story, which radiated out from the center of the plate and followed the circles until the outside edge. I also noticed that several of the plates seemed to have the same pattern painted on them (all by hand, I knew, since we had toured the factory prior to entering the showroom), albeit each in a different set of bright, carefully chosen colors. And then, halfway up the second wall and a little to the right, I saw it. And it was an instant, deep, and totally true love.
I knew I had to have the plate right away. The prices were marked on the back of the objects, but of course I knew from my parents' ongoing discussion with the owner in the next room that such things were wholly negotiable. Never mind that, though, I was determined to make this plate my own. As I reached for it and carefully removed it from its place amongst the others, I wasn't even sure why I was so drawn to this particular piece. The simple answer, of course, is that I've always had what my friends in college used to jokingly call an "inner raccoon", meaning that I tend to gravitate strongly towards things that are bright, shiny, and most of all colorful. The plate, of course, was all three of these things, and absolutely gorgeous to boot (trust me, the above picture doesn't even do it justice), but then again so were half the other things in that room, and none of them had made me whip out my credit card yet. I couldn't really articulate why I loved the thing, in other words, but I knew that I did, and that was enough reason for me to take the plate, turn, and rejoin the main room, the empty spot on the wall behind me a glaring testament to my refusal to separate myself from my plate for even a second longer.
As I re-entered the main room, my parents and the shopkeeper were just finishing their final cups of tea, having successfully arranged the purchase of not only their own jugs, but also a large serving platter for my sister (although in all fairness, I believe it was my sister who got the deal pushed through in the end -- the shopkeeper was very much interested in making sure the "lovely young lady" left happy). The old man, having secured his sale, turned towards me and his face lit up as he noticed the plate still clutched protectively to my chest. "Ah, the family print," he sighed, a reference to the fact that this particular plate held the concentric circle markings of his own family, the founders of the pottery mill and craftsmen for several generations. It was this pattern that I had seen repeated so often on other plates hanging in the room, though not in the brilliant reds, golds, and blues that made my plate so special. He scurried over to me and took the plate from my fingers, carefully tracing its textured surface with his own. "See here," he explained, "the central flower in the middle of the plate is the lotus blossom. A sign, in our tradition, of creation and perseverance, as this flower grows out of the mud from the bottom of the pond and emerges into the light above the water as a full and beautiful bloom." He paused and seemed to think for a moment before he added, "also, we say, it is a symbol of rebirth and new starts. The lotus folds itself away each night, disappearing beneath the surface to emerge again with the dawn." He broke out into a wide grin as I breathlessly whispered "perfect."
I didn't get much of a bargain for my lotus flower, especially when compared to the amazing deal orchestrated by the rest of my family in my absence. Maybe it was my refusal to sit down and drink another pot worth of scalding-hot tea, or the whiteness of my knuckles around the plate as I emerged from the dark room, or maybe it was something as simple as the way I held my breath as he described the plate's symbolism and the life-cycle of the lotus flower. Most likely it was my simple response, "perfect", that really did me in, although to be honest it really doesn't matter. I would have paid more for the plate, if I'd had to, and as it was the folded bills of Turkish Lira that I handed over seemed a weak offering for such a beautiful thing. It's amazing how money pales in the face of true love, after all.
5 months later I still look at the plate almost daily. I haven't yet hung it in my apartment, in fact, because I never could decide on the best place for something I love that much. Instead it sits on my kitchen counter, sometimes holding a couple pieces of fruit or some other object, but mostly just sitting there -- its open blossom a visible reminder of life, perseverance, and rebirth. And crazy as it sounds, there are moments when I just stand and stare at it, letting its color wash over me, and returning to the intense feeling of joy and rightness that I felt that first time I spotted the plate on a poorly-lit wall in a side room of a tiny pottery factory.
Today I tried my hand at recreating the bloom that I love so much on paper. It is, obviously, imperfect, but I wanted to try in honor of my friend (and many of yours also) who is living her last days in joy and peace right now down in Texas. She is, to me, an amazing example of rising up from the mud, growing through that dense water, and emerging above the surface as the most beautiful of blossoms. And although she might disappear again beneath the waters soon, I know she will continue to bloom in so many ways. So I'm dedicating this very humble effort to Courtney and her family, and to everyone awaiting a rebirth or transformation, as a reminder that what comes from mud can be beautiful, and that what at first seems delicate might be, in fact, the very picture of strength and what it means to persevere.
Monday, November 23, 2009
Musings on a Birthday Week
If I had known earlier that at age 28 I would need a lung transplant . . .
I might have appreciated all those summer hikes and winter ski trips that my parents "dragged" me on in the Colorado Rockies throughout my childhood, instead of whining about sore feet or cold fingers;
I might have played a little harder, or laughed a little louder at the really silly, ridiculous, little things like that time that my friends and I dressed up as "fashion models" and took homemade glamour shots in my bedroom with my tiny little pink camera (and I might even have saved some of the pictures);
I might have been surprised to know that one of my fondest memories now, living life in the biggest city in the country, is of lying outside in tiny little Oxford, GA (after driving at 3am to get there), looking up at a total universe of stars, watching a meteor shower with two of my best friends, and wondering how it was even possible for there to be that much light and that much enjoyment even in the middle of the night;
I might not have fought so much with my sister over nothing, because that was a total. waste. of. breath. (in every sense of the word);
I might have sung along even louder at all of those Indigo Girls and Dave Matthews Band and U2 and Elton John with Billy Joel and Bob Dylan and Ben Harper concerts that I went to throughout college (and yes, even one embarrassing but very fun Backstreet Boys show);
I would have really, really savored that road trip from Berkeley to Denver, even the stop off in Vegas and the stay at (where else?) New York, New York Casino;
I totally wouldn't have changed a single thing about that trip to Greece after the NY Bar Exam, especially not that strawberry moonshine we drank on that final night in Athens, or the restaurant with the view of the Parthenon at sunset, or the donkey ride through the streets of Santorini, or even that stupid mountain I was "forced" to climb on Delos to get to that bunch of scattered rocks (whoops, I mean, "awesome ruins");
I would have fallen on my knees in gratitude for the greater plan when I met Sammy back in 2008, because who could handle waiting for lungs without a live-in best friend to keep you company?;
I would have rocked every pastel-colored bridesmaid dress I've ever been asked to wear (you know, more than I already did totally rock them, of course);
I would definitely have used that "Welcome to Graceland" keychain with the ridiculous picture of my sister and me with the fake Elvis on it (I'll give you two guesses as to which of us was sporting a full-on crop top -- hint: Erin has better taste than I do!) and I would have laughed every time I got in my car or opened my apartment door;
I might have realized earlier just how amazingly connected we all are, and I might have had the foresight to treat every stranger I met like someone who might save my life someday with an indescribable gift;
I would like to say that I would have cherished these lungs for all they've been worth to me for the past 28 years, but I know that I was too busy living to truly count each breath, so instead I'll just take a second now to say to these "old" twins: thank you, for all that you are and all that you helped me do. I forgive you for any tantrums you might ever have had, which were, after all, a part of me too;
I might not have changed much, but I sure would have noticed it all a whole lot more.
And now that I know, I can at least take the time to just that. Hopefully for a long, long time to come.
I might have appreciated all those summer hikes and winter ski trips that my parents "dragged" me on in the Colorado Rockies throughout my childhood, instead of whining about sore feet or cold fingers;
I might have played a little harder, or laughed a little louder at the really silly, ridiculous, little things like that time that my friends and I dressed up as "fashion models" and took homemade glamour shots in my bedroom with my tiny little pink camera (and I might even have saved some of the pictures);
I might have been surprised to know that one of my fondest memories now, living life in the biggest city in the country, is of lying outside in tiny little Oxford, GA (after driving at 3am to get there), looking up at a total universe of stars, watching a meteor shower with two of my best friends, and wondering how it was even possible for there to be that much light and that much enjoyment even in the middle of the night;
I might not have fought so much with my sister over nothing, because that was a total. waste. of. breath. (in every sense of the word);
I might have sung along even louder at all of those Indigo Girls and Dave Matthews Band and U2 and Elton John with Billy Joel and Bob Dylan and Ben Harper concerts that I went to throughout college (and yes, even one embarrassing but very fun Backstreet Boys show);
I would have really, really savored that road trip from Berkeley to Denver, even the stop off in Vegas and the stay at (where else?) New York, New York Casino;
I totally wouldn't have changed a single thing about that trip to Greece after the NY Bar Exam, especially not that strawberry moonshine we drank on that final night in Athens, or the restaurant with the view of the Parthenon at sunset, or the donkey ride through the streets of Santorini, or even that stupid mountain I was "forced" to climb on Delos to get to that bunch of scattered rocks (whoops, I mean, "awesome ruins");
I would have fallen on my knees in gratitude for the greater plan when I met Sammy back in 2008, because who could handle waiting for lungs without a live-in best friend to keep you company?;
I would have rocked every pastel-colored bridesmaid dress I've ever been asked to wear (you know, more than I already did totally rock them, of course);
I would definitely have used that "Welcome to Graceland" keychain with the ridiculous picture of my sister and me with the fake Elvis on it (I'll give you two guesses as to which of us was sporting a full-on crop top -- hint: Erin has better taste than I do!) and I would have laughed every time I got in my car or opened my apartment door;
I might have realized earlier just how amazingly connected we all are, and I might have had the foresight to treat every stranger I met like someone who might save my life someday with an indescribable gift;
I would like to say that I would have cherished these lungs for all they've been worth to me for the past 28 years, but I know that I was too busy living to truly count each breath, so instead I'll just take a second now to say to these "old" twins: thank you, for all that you are and all that you helped me do. I forgive you for any tantrums you might ever have had, which were, after all, a part of me too;
I might not have changed much, but I sure would have noticed it all a whole lot more.
And now that I know, I can at least take the time to just that. Hopefully for a long, long time to come.
Saturday, November 21, 2009
Ode to Prednisone: A Late-Night Performance
Prednisone, oh Prednisone
Wherefore art thou . . .
so. freaking. annoying????
It's 1 am. I'm tired. Really. Honestly. Actually, "exhausted" might be a better word for it. I feel as though I could literally just let go and sleep for a day.
Well, I feel as though I could sleep for a day, that is, if I weren't on 40 mg of prednisone daily as part of a short "burst" up from my maintenance dose of 10mg.
Seriously, what is it about this drug that makes it both so effective and so totally, completely, beyond-a-doubt, and over-the-top, just plain evil?! I mean, don't get me wrong, I'm beyond grateful for the decrease in inflammation and increase in general breathing ability, plus gotta love the fact that I won't be blindsided by the steroids post-tx since I'm already way too familiar with them anyway, but still. Have I mentioned yet that it's 1 am?
This. Is. Ridiculous.
Bright side: thanks to my dear friend Mr. Prednisone (yes, prednisone is male, and with "friends" like these you definitely don't need enemies), I'm less likely to wake up coughing and needing airway clearance at 4 am, which has been my usual pattern as of late. So maybe I'll actually be getting more sleep? Hmm . . . seems unlikely, but I'm willing to grab ahold of it as a possible "silver lining" at this point. Okay, so I'm grasping at straws here people, but then again what did you expect?
I'm on prednisone, remember?
It's not as if all this extra energy doesn't have some advantages though, I guess. I mean, I enjoyed some serious quality time out with my parents tonight over a fabulous dinner and still had it in me to walk over to Times Square and pretend to be a tourist for a while. And of course this was after everything else today: after filming and playtime with Sampson and bonding with my dad over our shared sense of hypercompetiveness (let's just leave it at the fact that we got our game on in several different activities, and I unfortunately lost at most of them -- whatever happened to fathers letting their daughters win??). So you can see why my body is exhausted.
Yeah, it's just too bad my mind is too hopped up on drugs to follow suit.
Anyway, I've decided to put the energy where it belongs: into a quick celebration of everything that is so right with my life right now, because even the worst case of 'roid rage isn't enough to cancel out the fact that I'm blessed beyond measure. Blessed with an amazing, compassionate, and wise doctor who only uses this drug in large doses when I need it but who never hesitates when I do. Blessed with a dad who pushes me enough to never just "let" me win (but who loves me even when I lose). Blessed with a family able to come into New York for the holidays. Blessed with meds that work and veins that are still holding on. Blessed to have a great guy to take me to dinner tomorrow and a lot of fun planned for the upcoming week. Blessed to be almost 28 years out with my original lungs and to have new ones on the way through a great center. I am blessed, and I hope that I can cherish every minute of it for myself and for people like Ronnie and Court and Eva and Kelley and Sara and Sam and Libby and Beth and Patti and all the other cystics out there who I could never name but who inspire me all the time. I'm trying so hard to hold onto this knowledge tonight in the face of a deep loss for the entire CF community, but seriously, blessed doesn't even begin to capture it.
Luckily for me though, I'm totally wired (1:30 am and counting), so I have plenty of time to savor every blessed little moment.
Wherefore art thou . . .
so. freaking. annoying????
It's 1 am. I'm tired. Really. Honestly. Actually, "exhausted" might be a better word for it. I feel as though I could literally just let go and sleep for a day.
Well, I feel as though I could sleep for a day, that is, if I weren't on 40 mg of prednisone daily as part of a short "burst" up from my maintenance dose of 10mg.
Seriously, what is it about this drug that makes it both so effective and so totally, completely, beyond-a-doubt, and over-the-top, just plain evil?! I mean, don't get me wrong, I'm beyond grateful for the decrease in inflammation and increase in general breathing ability, plus gotta love the fact that I won't be blindsided by the steroids post-tx since I'm already way too familiar with them anyway, but still. Have I mentioned yet that it's 1 am?
This. Is. Ridiculous.
Bright side: thanks to my dear friend Mr. Prednisone (yes, prednisone is male, and with "friends" like these you definitely don't need enemies), I'm less likely to wake up coughing and needing airway clearance at 4 am, which has been my usual pattern as of late. So maybe I'll actually be getting more sleep? Hmm . . . seems unlikely, but I'm willing to grab ahold of it as a possible "silver lining" at this point. Okay, so I'm grasping at straws here people, but then again what did you expect?
I'm on prednisone, remember?
It's not as if all this extra energy doesn't have some advantages though, I guess. I mean, I enjoyed some serious quality time out with my parents tonight over a fabulous dinner and still had it in me to walk over to Times Square and pretend to be a tourist for a while. And of course this was after everything else today: after filming and playtime with Sampson and bonding with my dad over our shared sense of hypercompetiveness (let's just leave it at the fact that we got our game on in several different activities, and I unfortunately lost at most of them -- whatever happened to fathers letting their daughters win??). So you can see why my body is exhausted.
Yeah, it's just too bad my mind is too hopped up on drugs to follow suit.
Anyway, I've decided to put the energy where it belongs: into a quick celebration of everything that is so right with my life right now, because even the worst case of 'roid rage isn't enough to cancel out the fact that I'm blessed beyond measure. Blessed with an amazing, compassionate, and wise doctor who only uses this drug in large doses when I need it but who never hesitates when I do. Blessed with a dad who pushes me enough to never just "let" me win (but who loves me even when I lose). Blessed with a family able to come into New York for the holidays. Blessed with meds that work and veins that are still holding on. Blessed to have a great guy to take me to dinner tomorrow and a lot of fun planned for the upcoming week. Blessed to be almost 28 years out with my original lungs and to have new ones on the way through a great center. I am blessed, and I hope that I can cherish every minute of it for myself and for people like Ronnie and Court and Eva and Kelley and Sara and Sam and Libby and Beth and Patti and all the other cystics out there who I could never name but who inspire me all the time. I'm trying so hard to hold onto this knowledge tonight in the face of a deep loss for the entire CF community, but seriously, blessed doesn't even begin to capture it.
Luckily for me though, I'm totally wired (1:30 am and counting), so I have plenty of time to savor every blessed little moment.
Friday, November 20, 2009
We're Number 1!
Yesterday was a loooong day of filming for the CFF! We started out at my house with personal interviews about life with CF and waiting for transplant, then moved on to the hospital where I had appointments with both my vascular surgeon and my CF doctor. The filming finally wrapped up with some "B roll" footage of my sister's art gallery opening (so cool!) and some shots this morning of the family and treatment time, etc. Add to that the fact that a homecare nurse came at 11 pm last night to start a new peripheral, and you've got a recipe for a very long, exhausting, wonderful, fun, and somewhat surreal day.
By the way, for those of you unfamiliar with the American Airlines Celebrity Ski event benefiting the CFF, check out the website here (just make sure you click on the Ski event for CF, rather than the equally worthy golf event for breast cancer!). The event is a major national fundraiser for the foundation, and has played host to tons of great celebrities who give their time, effort, money, and talent to help find a cure (To name just a few: Rosie O'Donnell, Jeff Dunham, members of the cast of the original 90210, Denis Haskins -- aka, Mr. Belding from Saved by the Bell, and MacKenzie Rosman of 7th Heaven, whose own sister recently got her wings after two years of breathing CF free thanks to a transplant). Each year around 1,000 participants gather together to ski, have fun, listen to amazing music, enjoy comedy shows, and most of all, CURE CF! I have been truly blessed and honored to be a part of this event almost from its conception, and though I can't travel out to Colorado this year because of the transplant, I know that they'll be kicking some CF butt in my absence. Just a HUGE thank you to everyone associated with the event, and also to the awesome crew from MultiImage media that came to shoot the film.
Okay so on to more immediately relevant stuff. As you might have guessed from the above mentioned IV nurse, I'm not off the drugs. My visit with my CF doc went well, but my PFTs are down just a bit and I'm still coughing even after 18 days on the big guns, so we're gonna keep them coming. My biggest worry was getting caught over Thanksgiving week with no IV and no doctors around, so I think it's better this way. And yes, it sucks not to be IV free for the holidays, but it would suck a whole lot more to feel like crap and be coughing up crud. So this is probably a good thing -- call it a nice gift wrapped in kinda depressing paper. I know once I open it and reap the benefits of full health I'll be glad I did, but right now it's still in the corner with that ugly sweater from Aunt Dotty. Oh well, I'll just let it sit for a few minutes.
But if I'm still on the IVs, then at least I'm off the blood thinners! That's right, the clots are gone, the jig is up, and the "Not-Quite-So-Great PICC Clot Fiasco of 2009" is officially, and totally, OVER. How's that for a little holiday cheer?
And . . . drumroll please . . . I am now, officially, without a doubt, number 1 on the transplant list for my height and blood type. Wow. Give me a second to process that and I promise I'll get back to you about how I feel. Right now all I can say is that it is amazing, thrilling, and unbelievably humbling to know that I am next in line for this gift of life. Scary as all get out, sure, but also SUCH great news.
Okay, so we're number 1! And we're here, in NYC, enjoying the gorgeously mild and warm weather for mid-November, and the family that's come in for the holiday, and the fact that I'm going on nearly 28 years with these lungs of mine, and the fact that we have the weekend free to play with friends, enjoy some nice dinners, and generally have fun.
Because, after all, we're number 1! And we couldn't be more grateful.
By the way, for those of you unfamiliar with the American Airlines Celebrity Ski event benefiting the CFF, check out the website here (just make sure you click on the Ski event for CF, rather than the equally worthy golf event for breast cancer!). The event is a major national fundraiser for the foundation, and has played host to tons of great celebrities who give their time, effort, money, and talent to help find a cure (To name just a few: Rosie O'Donnell, Jeff Dunham, members of the cast of the original 90210, Denis Haskins -- aka, Mr. Belding from Saved by the Bell, and MacKenzie Rosman of 7th Heaven, whose own sister recently got her wings after two years of breathing CF free thanks to a transplant). Each year around 1,000 participants gather together to ski, have fun, listen to amazing music, enjoy comedy shows, and most of all, CURE CF! I have been truly blessed and honored to be a part of this event almost from its conception, and though I can't travel out to Colorado this year because of the transplant, I know that they'll be kicking some CF butt in my absence. Just a HUGE thank you to everyone associated with the event, and also to the awesome crew from MultiImage media that came to shoot the film.
Okay so on to more immediately relevant stuff. As you might have guessed from the above mentioned IV nurse, I'm not off the drugs. My visit with my CF doc went well, but my PFTs are down just a bit and I'm still coughing even after 18 days on the big guns, so we're gonna keep them coming. My biggest worry was getting caught over Thanksgiving week with no IV and no doctors around, so I think it's better this way. And yes, it sucks not to be IV free for the holidays, but it would suck a whole lot more to feel like crap and be coughing up crud. So this is probably a good thing -- call it a nice gift wrapped in kinda depressing paper. I know once I open it and reap the benefits of full health I'll be glad I did, but right now it's still in the corner with that ugly sweater from Aunt Dotty. Oh well, I'll just let it sit for a few minutes.
But if I'm still on the IVs, then at least I'm off the blood thinners! That's right, the clots are gone, the jig is up, and the "Not-Quite-So-Great PICC Clot Fiasco of 2009" is officially, and totally, OVER. How's that for a little holiday cheer?
And . . . drumroll please . . . I am now, officially, without a doubt, number 1 on the transplant list for my height and blood type. Wow. Give me a second to process that and I promise I'll get back to you about how I feel. Right now all I can say is that it is amazing, thrilling, and unbelievably humbling to know that I am next in line for this gift of life. Scary as all get out, sure, but also SUCH great news.
Okay, so we're number 1! And we're here, in NYC, enjoying the gorgeously mild and warm weather for mid-November, and the family that's come in for the holiday, and the fact that I'm going on nearly 28 years with these lungs of mine, and the fact that we have the weekend free to play with friends, enjoy some nice dinners, and generally have fun.
Because, after all, we're number 1! And we couldn't be more grateful.
Wednesday, November 18, 2009
Life Lessons
It's no secret that I believe in the power of positivity. Honestly, if my blog does nothing else, I hope that it shares with my family and friends some insight into my view of the beauty of life (with or without CF) and the indescribable awesomeness of every. single. breath. I don't always have much to offer, and I've never claimed to be any sort of spiritual sage, but these past few years and months and weeks and days of living with CF and living in general have taught me that this gift of life is too amazing to spend suffering, regretting, or blaming. And of course my fellow cysters and fibros have added so much to that understanding -- all of us together, at all our various stages of progression and illness, health, life, and happiness -- stand in my mind as a sort of monument to the fact that overwhelming joy and the will to simply live are so much stronger than any disease or any set of mutated genes.
That said, there are CFers out there tonight who are not doing well. These people are kind, sweet, loving, and good-hearted individuals, with friends and family who cherish them and hate to see them fighting or in pain. And in the spirit of the upcoming week -- that of being grateful for all that we have, loving others, reunions and coming together -- I'm asking that each of you take a few minutes for our fellow journeyers in need of love, strength, peace, comfort, and light right now. Whether it's a moment of silent prayer, a shared blessing with your friends/family/congregation, the sending of good vibes, or just a second of your time to celebrate life in honor of these people, I'm sure that they, and their families, would deeply appreciate it.
For Eva, whose story has inspired and educated so many;
Natalia, who has an infant girl to come home to;
Courtney, who has touched my own life personally, as well as many others in this community;
Ginger, who has a devoted husband and young son;
For all the others, past and present, who show us what it means to LIVE . . .
Thank you for your strength in the face of obstacles, for your faith and love and optimism, for allowing us all to share in your stories -- through the good and the bad, for the money you've raised and the drugs you've helped to discover, for the companionship, the friendship, and the community that we've all shared. I am deeply humbled to be a part of it all, each and every day.
I truly believe that CFers together can move mountains. Hey, we defy expectations and conquer limitations each and every day, so what's a little miracle among friends, right? Please, please, please give a little of yourself and your time and your heart for those in our community who could use a little something extra tonight. And to everyone who is sick or healthy; living with CF at age 5 months or 50 years; breathing tonight alone or on oxygen or on the vent; caring for a loved one or being cared for by those you love; climbing mountains or climbing into your hospital bed -- thank you so much for the inspiration and the lessons.
That said, there are CFers out there tonight who are not doing well. These people are kind, sweet, loving, and good-hearted individuals, with friends and family who cherish them and hate to see them fighting or in pain. And in the spirit of the upcoming week -- that of being grateful for all that we have, loving others, reunions and coming together -- I'm asking that each of you take a few minutes for our fellow journeyers in need of love, strength, peace, comfort, and light right now. Whether it's a moment of silent prayer, a shared blessing with your friends/family/congregation, the sending of good vibes, or just a second of your time to celebrate life in honor of these people, I'm sure that they, and their families, would deeply appreciate it.
For Eva, whose story has inspired and educated so many;
Natalia, who has an infant girl to come home to;
Courtney, who has touched my own life personally, as well as many others in this community;
Ginger, who has a devoted husband and young son;
For all the others, past and present, who show us what it means to LIVE . . .
Thank you for your strength in the face of obstacles, for your faith and love and optimism, for allowing us all to share in your stories -- through the good and the bad, for the money you've raised and the drugs you've helped to discover, for the companionship, the friendship, and the community that we've all shared. I am deeply humbled to be a part of it all, each and every day.
I truly believe that CFers together can move mountains. Hey, we defy expectations and conquer limitations each and every day, so what's a little miracle among friends, right? Please, please, please give a little of yourself and your time and your heart for those in our community who could use a little something extra tonight. And to everyone who is sick or healthy; living with CF at age 5 months or 50 years; breathing tonight alone or on oxygen or on the vent; caring for a loved one or being cared for by those you love; climbing mountains or climbing into your hospital bed -- thank you so much for the inspiration and the lessons.
Tuesday, November 17, 2009
W.W.P.D.?
So I have a HUGE couple of weeks coming up with the holidays approaching. I can't even begin to say how excited I am and how much I have to be grateful for (as always) this year. It literally blows my mind when I think that in the next TWO WEEKS I will:
Anyway, since absolutely none of that had anything to do with the title of this post (or so it would seem), you're probably all a little confused right now. See, as excited as I am about all of the above, and despite all the many warm fuzzies swirling around and filling my head with visions of mulled wine and amazing homemade stuffing, I'm also a little, well . . . scared of it all, to be perfectly honest.
I'm nervous because I know that my health depends on following my routine, and we all know that the first thing out the window during huge family gatherings -- no matter where they happen -- is predictable routine. I also know that my body needs more rest than it used to -- that as fun as it is to push myself until I drop, it's not always the wisest decision in the long run. I'm ready as can be for all the nice dinners and social events, until I pause for a moment to remember that this year I'll have to make decisions about when to wear oxygen when I'm out on the town. And finally, as psyched as I am about all the yummy calories coming my way (a CFer's favorite part of the holiday season, for sure!), I can't help but remind myself that it might be tough to make time in between all that eating and socializing to hit the gym.
So what's a gal to do? I think in the past I pretty much wrote off the holidays as a bit of a free for all. As long as I stayed on top of my treatments and didn't overwhelm myself to the point of total sickness, that was good enough for me. After all, it's only a couple of weeks, and CFers are nothing if not masters of "pushing through it."
But this year, I'm approaching the whole thing from a slightly different perspective. For starters, I don't know when the call for transplant might come, and I don't honestly have two weeks to slack off on important things like my exercise routine, because who knows if I'll have the time to make those up after the holidays are over? Perhaps more important, though, are the promises I've made myself over the past year, like the promise to really focus my energy on getting STRONGER every day, and of course the promise to always consider my health -- because if I'm going to accept this gift of life from someone then I'd damn well better be ready to make the most of it.
Of course, I'm not planning to put a halt to any of the holiday fun. Health might come first right now, but it doesn't have to trump life (which is, after all, the reason we do all this stuff in the first place), right? So I've decided to make a simple change and ask one question that might make all the difference:
What Would Piper Do?
In other words, what would my body and spirit have me do over the long run? Sure, the turkey makes me tired in the moment, but that doesn't change the fact that Piper would still want to get in at least a walk. Much as I love to pack my days as full as possible, Piper has recently learned the value of resting and meditation to help de-stress and re-center. And yeah, sometimes I don't like the way the oxygen makes me look in public, but I'll bet Piper would rather wear the stuff and feel better so she can actually celebrate during all these birthdays and reunions. After all, despite my in-the-moment reservations, Piper is (hopefully) learning not to place so much emphasis on what other people might think, and maybe even to be proud of the cannula that shows the world that she can still get out of the house and have fun even while needing a little extra help. (Okay, so maybe not quite there yet, but making baby steps!)
I'm the first to admit that it's not a perfect approach. Piper, after all, is a lot of things, but she's definitely not perfect. I probably won't be able to market any "WWPD?" bracelets to the masses, and to be honest that's most likely a good thing. (Do we really need a bunch of Piper clones? Um, don't answer that!) But I am hoping that pausing for a second to ask myself this little question during the holidays will at least help me find that often delicate balance between life and all those other necessary things we CFers take on to manage our disease. Because when all is said and done, despite her many imperfections, Piper loves to savor things like holidays, food, friends, and family, and she also wants to be around to keep the fun going for as long as possible.
It's a tricky balance, sure, but this year I'm determined to try -- with a little help from Piper, of course.
- Enjoy out-of-town visits from my two best friends from college (one of whom was also my roommate for three years and is bringing along her boyfriend, who I've never met!), my father, my godmother, and my grandmother, along with a visit last night with a childhood friend I haven't seen since I was her bridesmaid several years ago.
- Film a CF awareness video on waiting for transplant for the CFF's American Airlines Celebrity Ski event -- which I've been blessed to be a part of for over 20 years.
- Attend a museum exhibit opening featuring some of my sister's fashion designs on display!
- Stop IVs!!
- Have a final follow-up appointment to hopefully end the "Not-Quite-So-Great PICC Clot Fiasco of 2009." Good riddance to bad rubbish.
- Celebrate my godmother and grandmother's birthdays with dinner and a Broadway show.
- Cook a Thanksgiving meal at home, to be enjoyed by friends and family in my own cozy little apartment, including my family's famous southern cornbread stuffing.
- Celebrate my 28th birthday -- first with a family dinner, then a few days later with friends.
Anyway, since absolutely none of that had anything to do with the title of this post (or so it would seem), you're probably all a little confused right now. See, as excited as I am about all of the above, and despite all the many warm fuzzies swirling around and filling my head with visions of mulled wine and amazing homemade stuffing, I'm also a little, well . . . scared of it all, to be perfectly honest.
I'm nervous because I know that my health depends on following my routine, and we all know that the first thing out the window during huge family gatherings -- no matter where they happen -- is predictable routine. I also know that my body needs more rest than it used to -- that as fun as it is to push myself until I drop, it's not always the wisest decision in the long run. I'm ready as can be for all the nice dinners and social events, until I pause for a moment to remember that this year I'll have to make decisions about when to wear oxygen when I'm out on the town. And finally, as psyched as I am about all the yummy calories coming my way (a CFer's favorite part of the holiday season, for sure!), I can't help but remind myself that it might be tough to make time in between all that eating and socializing to hit the gym.
So what's a gal to do? I think in the past I pretty much wrote off the holidays as a bit of a free for all. As long as I stayed on top of my treatments and didn't overwhelm myself to the point of total sickness, that was good enough for me. After all, it's only a couple of weeks, and CFers are nothing if not masters of "pushing through it."
But this year, I'm approaching the whole thing from a slightly different perspective. For starters, I don't know when the call for transplant might come, and I don't honestly have two weeks to slack off on important things like my exercise routine, because who knows if I'll have the time to make those up after the holidays are over? Perhaps more important, though, are the promises I've made myself over the past year, like the promise to really focus my energy on getting STRONGER every day, and of course the promise to always consider my health -- because if I'm going to accept this gift of life from someone then I'd damn well better be ready to make the most of it.
Of course, I'm not planning to put a halt to any of the holiday fun. Health might come first right now, but it doesn't have to trump life (which is, after all, the reason we do all this stuff in the first place), right? So I've decided to make a simple change and ask one question that might make all the difference:
What Would Piper Do?
In other words, what would my body and spirit have me do over the long run? Sure, the turkey makes me tired in the moment, but that doesn't change the fact that Piper would still want to get in at least a walk. Much as I love to pack my days as full as possible, Piper has recently learned the value of resting and meditation to help de-stress and re-center. And yeah, sometimes I don't like the way the oxygen makes me look in public, but I'll bet Piper would rather wear the stuff and feel better so she can actually celebrate during all these birthdays and reunions. After all, despite my in-the-moment reservations, Piper is (hopefully) learning not to place so much emphasis on what other people might think, and maybe even to be proud of the cannula that shows the world that she can still get out of the house and have fun even while needing a little extra help. (Okay, so maybe not quite there yet, but making baby steps!)
I'm the first to admit that it's not a perfect approach. Piper, after all, is a lot of things, but she's definitely not perfect. I probably won't be able to market any "WWPD?" bracelets to the masses, and to be honest that's most likely a good thing. (Do we really need a bunch of Piper clones? Um, don't answer that!) But I am hoping that pausing for a second to ask myself this little question during the holidays will at least help me find that often delicate balance between life and all those other necessary things we CFers take on to manage our disease. Because when all is said and done, despite her many imperfections, Piper loves to savor things like holidays, food, friends, and family, and she also wants to be around to keep the fun going for as long as possible.
It's a tricky balance, sure, but this year I'm determined to try -- with a little help from Piper, of course.
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