So I rearranged the top header of this blog a bit. It's the first time ever this blog has had anything other than text at the top. Let me explain.
The image now in the header is the lotus flower, taken directly from a plate I purchased in Turkey right before I got listed for new lungs. At the time, I wrote a post entitled "Love Among the Lotus Flowers" -- somewhat of a play on Robert Browning's "Love Among the Ruins", which you should totally check out if you're so inclined. He's way more eloquent than I am, but I digress.
Anyway, when I purchased the plate from which this image is taken, the Turkish painter who made these plates by hand pointed out to me that the lotus was highly significant in his town's culture. He told me about the way this particular flower lives in water, folding itself up at night and reopening each morning with the sun in a type of symbolic rebirth. At the time I was suffering both from undiagnosed sepsis from a port-a-cath infection (and about to come home to the scariest hospitalization of my life to date, hands down) and from a severe case of preemptive nostalgia. I was acutely aware that this trip to Turkey would be my last "vacation" at all (and certainly my last time in Europe) with the lungs I was born with. I thought about it constantly, in fact: "this is the last time MY lungs will get on an airplane"; "this is the last time MY lungs will visit Europe"; "this is the last time MY lungs will get spit on by a camel" (oh yeah, it happened). Basically it was just one weird string of "this is the last time..." moments. And of course, underlying all of that premature sense of loss was the unspoken addition to my "last time" statements, which was my own unacknowledged awareness that Turkey might well have been MY last family vacation, my LAST visit to Europe, MY last chance to pretend for a few days at least that everything was totally fine. I wasn't focused on that, of course -- in true Piper style I decided to transfer all of that emotion onto something replaceable like, oh, say a vital organ -- but that sense of urgency was definitely there, and I was searching for signs throughout the trip to help reassure myself that all these potential changes in my life, those acknowledged and those best left unspoken, were going to be okay.
The story about the lotus flower jumped out at me as probably the best darn "sign" I could have hoped for. Here was a story of rebirth and healing, combined with a flower known throughout several cultures as a symbol of good luck. The colors on the actual plate are vibrant and alive, and the attention to detail in the painting makes me wish I had enough patience to master that kind of skill. It is truly a work of art for which, in my case at least, the overinflated tourist price seemed like a completely fair bargain.
In the two years since bringing home my precious lotus flower, I have come to a couple of conclusions. The first of these is that having new lungs does not mean that I will never again be "Piper" in the way I feared. True, I lost a part of myself, and think I'll always miss it on some level, however rotten it was to live with. And also true that I was lucky. I was able to release my old lungs into the world outside of myself and welcome in a new (to me) gorgeous pair without some of the scary complications that can, in reality, go along with that. But the end result, I'm happy to say, is that I feel like myself, again. And also that I feel like myself, for maybe the first time. I feel like I'm able to fully access the person I was before my surgery (both my strengths and my weaknesses, my virtues and my vices seem well enough and alive in this new, renewed self of mine), but I am also able to do things that would never have been possible with my CF lungs. Simple things. Even silly thing, really, like lying flat on my back on laughing extra hard at someone's joke and not stopping until I darn well feel like it. I've realized that letting go does not always mean losing one's connections to the past, or to the future.
I've also learned that there's more to life than symbols and signs, though I don't doubt that they can be helpful, and even necessary. They were for me, after all. One glance through my sketch pad from my pre-transplant waiting period shows multiple depictions of the lotus, all in different colors and sizes and intensities. I'm glad I had that image to hold on to, for sure. Looking back at all of that, I can still appreciate the lotus for all that it was in my life during a difficult period, and for all that it is now -- which is to say a very pretty plate. I can remember my conversation with that lovely Turkish man and artist and I can smile, knowing that he and I shared something of value that he might not have even known he was offering when he made his highly effective sales pitch. I wonder now what I would say if I could take Donor Bob on a trip and go back to that workshop, find the new plate of the same general design that I am sure replaced my own, and sit there pondering the real meaning of rebirth: replacement breathing on replacement; old eyes staring at a new rendition of a familiar depiction; old design impressing itself upon a new pair of lungs set inside a familiar body.
This blog, like everything else in my life right now and hopefully always, is a constantly evolving feature. As I move from a world of documenting my journey waiting for new lungs, to a world of documenting the joys, sorrows, fears, and triumphs of living with them, and through to a world of documenting life not beyond transplant -- not ever beyond transplant, or beyond any other part of my personal history -- but life with transplant, I thought it was time, perhaps, for one more sign. So I offer you the lotus flower, its colors slightly faded from a journey across cultures, oceans, time, and body parts, to symbolize not only rebirth and second chances, but the fragility, beauty, mystery, and downright miracles that can sometimes come from learning how to let go within the darkness.
And how to blossom with the sunshine.
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.
Showing posts with label Lessons. Show all posts
Showing posts with label Lessons. Show all posts
Monday, September 19, 2011
Friday, August 19, 2011
Be Unbroken
On the evening of June 11th, 2010, I sat munching on a three-course dinner at a four-star NYC restaurant with my mother, father, and sister. The food was wonderful and easy to swallow; it was just too bad the same couldn't be said for the mood or the conversation. My family was, to put it mildly, a little bit distressed. A couple of days earlier we had received some disheartening news from one my doctors, and I was fairly certain that we were in for at least another month or two on the waiting list for new lungs. Another month or two of keeping my life "on hold", of living with ravaged lungs, of seeing the stress and worry in my loved ones' eyes. Another month of two of gasping for breath. Another month or two of hoping for a miracle...and of praying for survival.
Um, yeah, did I mention we were just a teeny, tiny bit upset that night?
Of course, many of you know the rest of the story from that evening. You know the part about how, just as our check arrived, my phone started to ring and the tell-tale number flashed up on my caller ID. You might have heard about how we rushed out the door of the restaurant, my dad sprinting for the nearest cab, my mom already on her phone to some of our nearest and dearest. And you may even remember the pictures of all 4 of us sitting in the admissions waiting room at my hospital, proudly displaying our "new lungs" t-shirts and looking pretty stunned to be there. We were jaded from too many dry runs and near misses, and we were none of us exactly sure what to expect that evening. That we would end up "meeting" my beloved Donor Bob in the early hours of June 12th, 2010, was almost more than we would have ever dared hope.
Yes, many of you know the story because we were blessed to have so many wonderful followers out there from so many different walks of life. Then again, you might not know quite as much about that evening as you think you do. Because the part of the story that you might not have heard is how much I cried.
As soon as I got the call I ran down to the bathroom of the restaurant and locked myself inside, where I quickly turned on the sink to make some background noise. I knew my family was waiting for me outside the door, so I made it quick. I looked straight in the mirror, saw the terrified, overwhelmed, exhausted face staring back at me -- and burst into tears. Not because of what I saw there, but because I knew I would likely never see that face again. I cried, in other words, not for the miraculous blessing I was about to receive, but for the wonderful thing (and yes, my lungs were wonderful, in their own way) that I was giving up. I cried for the part of myself that I was losing.
My father recently had a discussion with a wonderful CF doctor that my family has known and trusted for years and years and years. (Note the number there: I put in three because I'm almost 30 -- yikes! Who'd have thunk that, right?) This highly trained physician and researcher mentioned to dad that, at least in his experience, most transplant patients have an emotional element to their surgery that isn't really addressed or spoken of, or at least not super often. He compared it to the PTSD often seen in people returning from conflict or war -- basically the sense of having been changed by the experience, and the crises of faith or identity that can sometimes go hand-in-hand with an important and life-altering event. I'm sure there's a more technical description for all of that (and PS, if you have one, please share it!), but for my purposes here it's enough to know that it can simply be hard, on a lot of levels.
My first conscious thought after surgery was that this was going to be difficult. It wasn't so much the physical pain that was a problem -- I expected all of that, and more -- but the strange feeling I had of suddenly being out of control. As silly as it sounds, I had an immediate sense of "missing" my old lungs. They were little brats by the end there, sure, but they were brats that I knew how to discipline, knew how to coddle, and knew how to live with. All the new medicines and machines and doctors and surroundings confused me, even after I came out of my ICU madness (and for the record I was pretty bad in there -- they really shouldn't let people with law degrees get major surgery). For a long time after the operation I had a very unsettling tendency to burst into tears at random moments. And sure, probably a fair amount of that emotion was drug-induced or pain-related, of course, but I think there was something more to it as well. Weird as it is to admit, and certainly to type and record here for the duration of this blog, I think I felt a little, well...I guess the word would be lost. People around me were celebrating, they were grateful, they were "done." They wanted me to talk about how much better I felt, and how happy I was, and in a way all of that was completely reasonable. But there was also another part of it for me. I felt like maybe there was going to be more to this whole transplant thing than simply learning how to breathe again and then just getting on with it. Or, to put it another way, I suddenly realized that it wasn't going to be all "hey, cool, new lungs, new breath, new life. Bye, mom, and have fun back in Colorado! Thanks for the prayers, everyone. See you all when I win my Nobel Prize!"
Um, yeah, not so much.
Don't get me wrong, guys. I don't want anyone to misread my message here as a major Debbie Downer moment. I am thrilled and grateful beyond my wildest dreams to have been given this chance at life with new lungs. I am firmly and completely in support of transplant, for those who think it's the right choice for them, and I am 100% certain that I made the right choice. I love and respect my doctors, trust that I am getting awesome follow-up care, and count my lucky stars daily for all the support I received (and continue to receive) from all of the beautiful people in my life. To say I am blessed would be like calling the Empire State Building "tall" -- it just doesn't do the real thing justice.
That said, I was really intrigued when my dad told me about this doctor's perspective. He knows what he's doing, and he's worked with a lot of different CF patients of various ages. His observations about stress, trauma, and transplant certainly won't hold true in every case, of course, but I think I'm ready to admit that they really did ring true for me. Despite all the wonder and the beauty and the blessings and the crazy awesome stressful happy unfuckingbelievable madness of my story, I think it's fair to say that there is a little something of me that I still think of as missing. It's maybe just something that I am learning, however slowly and however different it may end up looking, to rebuild.
And so tomorrow night my wonderful Godmother is taking me out for a small celebration, to ring in 14 months of this new(ish) existence in style and to toast the start of new things. Although I am still on IV antibiotics and still struggling with certain aspects of this process, I am also starting -- again, however slowly -- to face my own reflection, even if it looks just a tiny bit different now. And as part of that moment, we will go back to the restaurant where it all started. Or maybe where it all ended, depending on your perspective. Because I want to go back there. Because I need to find my way back, no matter how corny or dramatic it sounds. Because I am ready to move forward -- whatever that means. And because I am always, eternally and forever, beyond grateful.
For all of it.
Um, yeah, did I mention we were just a teeny, tiny bit upset that night?
Of course, many of you know the rest of the story from that evening. You know the part about how, just as our check arrived, my phone started to ring and the tell-tale number flashed up on my caller ID. You might have heard about how we rushed out the door of the restaurant, my dad sprinting for the nearest cab, my mom already on her phone to some of our nearest and dearest. And you may even remember the pictures of all 4 of us sitting in the admissions waiting room at my hospital, proudly displaying our "new lungs" t-shirts and looking pretty stunned to be there. We were jaded from too many dry runs and near misses, and we were none of us exactly sure what to expect that evening. That we would end up "meeting" my beloved Donor Bob in the early hours of June 12th, 2010, was almost more than we would have ever dared hope.
Yes, many of you know the story because we were blessed to have so many wonderful followers out there from so many different walks of life. Then again, you might not know quite as much about that evening as you think you do. Because the part of the story that you might not have heard is how much I cried.
As soon as I got the call I ran down to the bathroom of the restaurant and locked myself inside, where I quickly turned on the sink to make some background noise. I knew my family was waiting for me outside the door, so I made it quick. I looked straight in the mirror, saw the terrified, overwhelmed, exhausted face staring back at me -- and burst into tears. Not because of what I saw there, but because I knew I would likely never see that face again. I cried, in other words, not for the miraculous blessing I was about to receive, but for the wonderful thing (and yes, my lungs were wonderful, in their own way) that I was giving up. I cried for the part of myself that I was losing.
My father recently had a discussion with a wonderful CF doctor that my family has known and trusted for years and years and years. (Note the number there: I put in three because I'm almost 30 -- yikes! Who'd have thunk that, right?) This highly trained physician and researcher mentioned to dad that, at least in his experience, most transplant patients have an emotional element to their surgery that isn't really addressed or spoken of, or at least not super often. He compared it to the PTSD often seen in people returning from conflict or war -- basically the sense of having been changed by the experience, and the crises of faith or identity that can sometimes go hand-in-hand with an important and life-altering event. I'm sure there's a more technical description for all of that (and PS, if you have one, please share it!), but for my purposes here it's enough to know that it can simply be hard, on a lot of levels.
My first conscious thought after surgery was that this was going to be difficult. It wasn't so much the physical pain that was a problem -- I expected all of that, and more -- but the strange feeling I had of suddenly being out of control. As silly as it sounds, I had an immediate sense of "missing" my old lungs. They were little brats by the end there, sure, but they were brats that I knew how to discipline, knew how to coddle, and knew how to live with. All the new medicines and machines and doctors and surroundings confused me, even after I came out of my ICU madness (and for the record I was pretty bad in there -- they really shouldn't let people with law degrees get major surgery). For a long time after the operation I had a very unsettling tendency to burst into tears at random moments. And sure, probably a fair amount of that emotion was drug-induced or pain-related, of course, but I think there was something more to it as well. Weird as it is to admit, and certainly to type and record here for the duration of this blog, I think I felt a little, well...I guess the word would be lost. People around me were celebrating, they were grateful, they were "done." They wanted me to talk about how much better I felt, and how happy I was, and in a way all of that was completely reasonable. But there was also another part of it for me. I felt like maybe there was going to be more to this whole transplant thing than simply learning how to breathe again and then just getting on with it. Or, to put it another way, I suddenly realized that it wasn't going to be all "hey, cool, new lungs, new breath, new life. Bye, mom, and have fun back in Colorado! Thanks for the prayers, everyone. See you all when I win my Nobel Prize!"
Um, yeah, not so much.
Don't get me wrong, guys. I don't want anyone to misread my message here as a major Debbie Downer moment. I am thrilled and grateful beyond my wildest dreams to have been given this chance at life with new lungs. I am firmly and completely in support of transplant, for those who think it's the right choice for them, and I am 100% certain that I made the right choice. I love and respect my doctors, trust that I am getting awesome follow-up care, and count my lucky stars daily for all the support I received (and continue to receive) from all of the beautiful people in my life. To say I am blessed would be like calling the Empire State Building "tall" -- it just doesn't do the real thing justice.
That said, I was really intrigued when my dad told me about this doctor's perspective. He knows what he's doing, and he's worked with a lot of different CF patients of various ages. His observations about stress, trauma, and transplant certainly won't hold true in every case, of course, but I think I'm ready to admit that they really did ring true for me. Despite all the wonder and the beauty and the blessings and the crazy awesome stressful happy unfuckingbelievable madness of my story, I think it's fair to say that there is a little something of me that I still think of as missing. It's maybe just something that I am learning, however slowly and however different it may end up looking, to rebuild.
And so tomorrow night my wonderful Godmother is taking me out for a small celebration, to ring in 14 months of this new(ish) existence in style and to toast the start of new things. Although I am still on IV antibiotics and still struggling with certain aspects of this process, I am also starting -- again, however slowly -- to face my own reflection, even if it looks just a tiny bit different now. And as part of that moment, we will go back to the restaurant where it all started. Or maybe where it all ended, depending on your perspective. Because I want to go back there. Because I need to find my way back, no matter how corny or dramatic it sounds. Because I am ready to move forward -- whatever that means. And because I am always, eternally and forever, beyond grateful.
For all of it.
Sunday, May 15, 2011
The News
In case you haven't noticed, there's been a lot going on around here lately. And believe me, it's fine if you really haven't noticed, because I've been a little absent and I realize that my last post was a little, um, cryptic? But the point is that whether it's been obvious on this blog or not, there has been (and continues to be) a heck of lot going on in My So-Called Cystic Life -- some of it good and some of it bad. So I thought I'd take a second to catch my beautiful breathheads up a bit on all the news in my life.
The bad news is that I remain on and off IVs every 2-4 weeks like clockwork, and have since my transplant almost a full year ago (before that I was just "on" though, so maybe this is better?). I'm always a little tormented about what (if anything) to say about that, but the simple fact is that I never promised this blog would be easy. I never promised it would be 100% positive. I never promised it would always be fun. What I did promise, however, is that it would be honest, so I figure I should just bite the bullet and type the truth. For the past few months my docs have been hardcore pushing a new drug cocktail on me, consisting of mostly polymyxin and aztreonam as opposed to my usual aztreonam/merrem/imi/cipro/cayston/levaquin/minocycline/whatever combo. It's been . . . um . . . well, let's just say that it's been interesting (and that it's involved enough walking into stationary objects to make The 3 Stooges extremely proud). It's also involved a couple of rounds of cefapime (neither of which lasted more than a couple of days before the drug was pulled due to allergies) and a whole host of other "fun" excitement from nausea to low WBC counts to weird pigmentation issues. (Seriously, if one more person asks where I got so "tan" they're going to get a squirt of polymyxin in the eye!) So, um, yeah . . . the past few months have been decidedly "not boring" from an infection standpoint -- although one has to wonder when the infection starts to just become "normal" and being healthy actually becomes the "weird and unsettling" part. I'm trying hard not to slip into the mindset, believe me.
The good news is, though, that while all of this has been pretty annoying, I really can say that it's been exactly that: annoying. As in, not life-threatening, not super scary, not mind-blowing, and not "oh my goodness get me out of here because I just don't know if I can take this anymore" style frustrating. Just annoying, plain and simple. My kidneys aren't failing due to the drugs, my lungs seem to be holding up just fine despite the onslaught, and my gut is . . . well, let's just acknowledge that they didn't give me a gut/pancreas transplant and leave it at that. (And to the CFers out there: don't pretend you don't all know exactly what I mean by that, by the way!) From a major transplant complication perspective, in fact, I really don't have much to report on here at all -- and for that I am beyond grateful.
The new news is that I did have a bronch last Friday, and after it was over I did in fact make it over to see my ENT in one of my hospital's outpost buildings way the heck across town. For those of you who may have already had the -- ahem -- pleasure of experiencing a bronch, you'll understand that going anywhere directly afterward defies all normal laws of logic, reason, and fentanyl. Nonetheless I was able to make it, thanks in no small part to my lovely sister, and while there I learned that my sinuses are pretty much completely blocked. As in, there was no black on my CT scan, in any of my sinuses. At all. So we went ahead and scheduled sinus surgery, which I'm really hoping can be done on an outpatient basis, and I think we're all hoping things get better after that.
As for the actual bronch, it was uneventful. Doctor found some slime in my upper airway (thanks again, sinuses!) and we're checking for rejection due to a very small dip in my more recent PFTs. The goo culture and the biopsy results should be in next week, but until then I'm choosing not to worry and to focus on things like CF awareness month and Great Strides instead. Not that I have anything against sinus slime, per se, but, well, it just doesn't make for a very pleasant weekend to dwell on that sort of stuff.
So that's the update -- 100% free from any crazy wordplay or other random piperisms. And I have to say that it really does feel amazing to write it out; to know that I have the sort of friends and community who is ready (and able) to receive this slimy, gooey, messy story of tangled IV tubing and annoying antibiotics and perpetual procedures without judgment and without shock or pity or total confusion; and, if i'm lucky, to maybe even earn the chance to let it go. And this should have been old news to me, I'm sure, because I don't know how many times you guys have taught me this lesson in the past, but old habits die hard and I think I will forever be the girl who would prefer to be cryptic than to be (almost) heartbreakingly honest.
Sorry guys, I had to do it.
So thank you, all of you, for teaching me honesty and for reading -- even when the going gets admittedly tough. I wish I had better words to say it. I wish that I had half the force as all of you together have. I wish that I could be as big of an inspiration for this community as it has been for me. And, above all, I wish you all lots and lots of news now and for a very long time into the future.
And all the friends you need to get you through it.
The bad news is that I remain on and off IVs every 2-4 weeks like clockwork, and have since my transplant almost a full year ago (before that I was just "on" though, so maybe this is better?). I'm always a little tormented about what (if anything) to say about that, but the simple fact is that I never promised this blog would be easy. I never promised it would be 100% positive. I never promised it would always be fun. What I did promise, however, is that it would be honest, so I figure I should just bite the bullet and type the truth. For the past few months my docs have been hardcore pushing a new drug cocktail on me, consisting of mostly polymyxin and aztreonam as opposed to my usual aztreonam/merrem/imi/cipro/cayston/levaquin/minocycline/whatever combo. It's been . . . um . . . well, let's just say that it's been interesting (and that it's involved enough walking into stationary objects to make The 3 Stooges extremely proud). It's also involved a couple of rounds of cefapime (neither of which lasted more than a couple of days before the drug was pulled due to allergies) and a whole host of other "fun" excitement from nausea to low WBC counts to weird pigmentation issues. (Seriously, if one more person asks where I got so "tan" they're going to get a squirt of polymyxin in the eye!) So, um, yeah . . . the past few months have been decidedly "not boring" from an infection standpoint -- although one has to wonder when the infection starts to just become "normal" and being healthy actually becomes the "weird and unsettling" part. I'm trying hard not to slip into the mindset, believe me.
The good news is, though, that while all of this has been pretty annoying, I really can say that it's been exactly that: annoying. As in, not life-threatening, not super scary, not mind-blowing, and not "oh my goodness get me out of here because I just don't know if I can take this anymore" style frustrating. Just annoying, plain and simple. My kidneys aren't failing due to the drugs, my lungs seem to be holding up just fine despite the onslaught, and my gut is . . . well, let's just acknowledge that they didn't give me a gut/pancreas transplant and leave it at that. (And to the CFers out there: don't pretend you don't all know exactly what I mean by that, by the way!) From a major transplant complication perspective, in fact, I really don't have much to report on here at all -- and for that I am beyond grateful.
The new news is that I did have a bronch last Friday, and after it was over I did in fact make it over to see my ENT in one of my hospital's outpost buildings way the heck across town. For those of you who may have already had the -- ahem -- pleasure of experiencing a bronch, you'll understand that going anywhere directly afterward defies all normal laws of logic, reason, and fentanyl. Nonetheless I was able to make it, thanks in no small part to my lovely sister, and while there I learned that my sinuses are pretty much completely blocked. As in, there was no black on my CT scan, in any of my sinuses. At all. So we went ahead and scheduled sinus surgery, which I'm really hoping can be done on an outpatient basis, and I think we're all hoping things get better after that.
As for the actual bronch, it was uneventful. Doctor found some slime in my upper airway (thanks again, sinuses!) and we're checking for rejection due to a very small dip in my more recent PFTs. The goo culture and the biopsy results should be in next week, but until then I'm choosing not to worry and to focus on things like CF awareness month and Great Strides instead. Not that I have anything against sinus slime, per se, but, well, it just doesn't make for a very pleasant weekend to dwell on that sort of stuff.
So that's the update -- 100% free from any crazy wordplay or other random piperisms. And I have to say that it really does feel amazing to write it out; to know that I have the sort of friends and community who is ready (and able) to receive this slimy, gooey, messy story of tangled IV tubing and annoying antibiotics and perpetual procedures without judgment and without shock or pity or total confusion; and, if i'm lucky, to maybe even earn the chance to let it go. And this should have been old news to me, I'm sure, because I don't know how many times you guys have taught me this lesson in the past, but old habits die hard and I think I will forever be the girl who would prefer to be cryptic than to be (almost) heartbreakingly honest.
Sorry guys, I had to do it.
So thank you, all of you, for teaching me honesty and for reading -- even when the going gets admittedly tough. I wish I had better words to say it. I wish that I had half the force as all of you together have. I wish that I could be as big of an inspiration for this community as it has been for me. And, above all, I wish you all lots and lots of news now and for a very long time into the future.
And all the friends you need to get you through it.
Saturday, April 16, 2011
The Little Things
This is a picture of my thermometer.
I acquired this little yellow doom-stick in a total isolation room on the seventh floor of my hospital. It tried to "stick" it to me (terrible pun totally intended) by registering a fever on the day of my planned discharge and royally freaking out my doctors. After I had weaseled my way out of the situation with the help of my good friend Tylenol and all the argumentative force of a very expensive legal education, I figured the little troublemaker owed me a favor or two, so I pocketed it. (Note to readers: this is 100% legal in the hospital with disposable thermometers -- you've already paid for them anyway.) Unfortunately, in my glee at "free" new medical equipment, I forgot and left my beautiful blanket behind on my hospital bed. Hey, you win some, you lose some, right?
And what I "won" in this case was a judgmental piece of plastic that lately has been spoiling my plans way too often, despite a hefty dose of immuno-suppressants and a polymyxin/aztreonam IV cocktail. To say that me and "Thermy" here are not close friends would be an understatement on par with calling the cast of Bravo's Real Housewives, "just a little bit annoying." Still, most of the time the two of us are able to bury the hatchet and get along for the 10 seconds or so that it takes Mr. Killjoy to do his job and register a fever.
Most of the time, that is, until last Friday.
The events in question started out pretty much like always in that I was super cold and shivering under about 15 blankets when it suddenly dawned on me that maybe I should actually take my temperature rather than blaming the 60 degree weather outside. So I fished the little monster out of my medicine cabinet and popped it in my mouth. As I did so, I also made my patented cross-eyed contortionist face, which allows me to see when the little "F" on the thermometer stops blinking, and then I know the reading is done. It's a fun little party trick, only this time my friend, who was standing about 10 feet away from me, happened to pull a confused face of her own.
"Hey Pipe, why are you still holding that thermometer in your mouth? It's been beeping for a while now."
Um . . . pardon my language here, but shit. Turns out the thermometer that I've had for 4 months -- the one I thought was annoyingly silent -- is, in point of fact, anything but. The darn thing beeps, apparently with some repetition, and it has been making this beep at me every day at least twice a day, week after week, month after month, from a distance of about 6 inches from my ear. And I have never heard it. Not even once.
Okay, so let me just pause for a second here to acknowledge that this is not the end of the world. I have known for over a year now that I have permanent hearing loss at the high frequency level from a lifetime's worth of high-dose tobramycin use. And, weirdly enough, I'm okay with that, especially because my particular case is very mild by hearing loss standards. Even on the day I failed my hearing test I didn't really think much of it. I was, more than anything, disappointed by the loss of yet another helpful drug to the side-effect gods and my life more or less continued on as normal -- I just sort of accepted that I wouldn't be able to understand people very well if there was a lot of background noise and then I moved on. There wasn't anything I could do about it, anyway.
On the other hand, though, the incident this past week really threw me for a bit of a loop, and I have to admit that I'm still a little confused as to why. I mean, not to sound dramatic or anything, but I wake up every morning and pop a handful of pills designed to make my body as vulnerable as possible to any and all infectious agents, with the hope that such vulnerability will also help protect the foreign organs that currently reside in my chest. I follow this up with shots to ensure my blood doesn't clot and (more often than not for the past few years) several hours spent plugged into high-dose antibiotics that make me walk like a drunken sailor and lose much of the sensation in my face and hands. I'm completely used to checking my blood sugar and giving myself insulin shots at the dinner table by now, and I'm surprisingly cavalier about waltzing around New York City with a needle sticking visibly out of my chest. And given all of this (not to mention the slew of other stuff people with chronic illness face on a daily basis), you'd really think it should take more than a silly beeping thermometer to ruin my day. Right?
Wrong.
That insignificant piece of plastic and its inaudible beep really, really, really pisses me off.
People like to tell us that we should focus on the beautiful little things in life, and also that we shouldn't sweat the small stuff. But I'm the first to admit that, more often than not, I seem to get it the other way around. Lung failure and subsequent open-chest surgery, constant IVs, and a medication schedule that would confuse most pharmacists seems, well, kind of run-of-the-mill to me now. Not to sound blase or anything, but I've been through it, I've seen friends go through it, and I've even learned to laugh at some of the morbid stuff. I had to. But yet I still get angry and defensive when my family (lovingly) teases me about my less-than-perfect performance as a patient in the ICU. I still get mad when my housekeeper rearranges my medicine cabinet (do.not.touch.the.drugs.), and I'm kind of ashamed to even admit how pissed off I get when I can't find a cab in the rain. And yes, even I am aware that the last one on that list is possibly the single whiniest complaint ever. I'm still 100% guilty as charged.
So, yes, it's true that I can ignore a rainbow or a kind smile from a stranger, and still get my day "ruined" by something that I know is, in the grander scheme of things, probably not even that big of a deal. And for the record I'm not saying that hearing loss of any kind at 29 is acceptable, but I am admitting that I'm not quite sure why I choose to focus so much energy on that, rather than on the multitude of other things that are going right (or wrong) at any given moment in my life. I'm not sure why I can handle talking about an infection that nearly killed me, but not about the ICU that saved my life. And I'm not sure why some things seem so much more intense in the moment than they do, say, a couple days down the road -- or even to the person standing 2 feet to the right -- while other things can seem like no big deal at the time, until I work myself into an angry frenzy two days later. I think that for me personally it all comes down to the way I see myself (whether that be as someone who can laugh at a little thermometer or as the world's best ICU patient), but it could just as easily be about trying to put forward an image of the person I wish I could be.
I do know for certain that it's not for me to judge what's big or small in another person's life, especially when I can't even get it completely sorted out in my own. I've also accepted the simple fact that it isn't up to me, at least on the very gut level, what sort of things will leave me chuckling at my own ridiculousness and what will make me cringe every time I hear the story. What is up to me, however, is the way I choose to react to something once it's already happened: how and when I choose to let out my frustration, the conversations I might need to have to solve the problem, and what I might do to minimize my discomfort in the future. I can't necessarily promise that I'll never be caught sweating out the small(er) stuff, but I can choose to ask the question of why something is really bothering me and what the best way is to deal with the problem. And if I'm really strong I might even choose to listen to the answer.
Provided, of course, that I can even hear it.
I acquired this little yellow doom-stick in a total isolation room on the seventh floor of my hospital. It tried to "stick" it to me (terrible pun totally intended) by registering a fever on the day of my planned discharge and royally freaking out my doctors. After I had weaseled my way out of the situation with the help of my good friend Tylenol and all the argumentative force of a very expensive legal education, I figured the little troublemaker owed me a favor or two, so I pocketed it. (Note to readers: this is 100% legal in the hospital with disposable thermometers -- you've already paid for them anyway.) Unfortunately, in my glee at "free" new medical equipment, I forgot and left my beautiful blanket behind on my hospital bed. Hey, you win some, you lose some, right?
And what I "won" in this case was a judgmental piece of plastic that lately has been spoiling my plans way too often, despite a hefty dose of immuno-suppressants and a polymyxin/aztreonam IV cocktail. To say that me and "Thermy" here are not close friends would be an understatement on par with calling the cast of Bravo's Real Housewives, "just a little bit annoying." Still, most of the time the two of us are able to bury the hatchet and get along for the 10 seconds or so that it takes Mr. Killjoy to do his job and register a fever.
Most of the time, that is, until last Friday.
The events in question started out pretty much like always in that I was super cold and shivering under about 15 blankets when it suddenly dawned on me that maybe I should actually take my temperature rather than blaming the 60 degree weather outside. So I fished the little monster out of my medicine cabinet and popped it in my mouth. As I did so, I also made my patented cross-eyed contortionist face, which allows me to see when the little "F" on the thermometer stops blinking, and then I know the reading is done. It's a fun little party trick, only this time my friend, who was standing about 10 feet away from me, happened to pull a confused face of her own.
"Hey Pipe, why are you still holding that thermometer in your mouth? It's been beeping for a while now."
Um . . . pardon my language here, but shit. Turns out the thermometer that I've had for 4 months -- the one I thought was annoyingly silent -- is, in point of fact, anything but. The darn thing beeps, apparently with some repetition, and it has been making this beep at me every day at least twice a day, week after week, month after month, from a distance of about 6 inches from my ear. And I have never heard it. Not even once.
Okay, so let me just pause for a second here to acknowledge that this is not the end of the world. I have known for over a year now that I have permanent hearing loss at the high frequency level from a lifetime's worth of high-dose tobramycin use. And, weirdly enough, I'm okay with that, especially because my particular case is very mild by hearing loss standards. Even on the day I failed my hearing test I didn't really think much of it. I was, more than anything, disappointed by the loss of yet another helpful drug to the side-effect gods and my life more or less continued on as normal -- I just sort of accepted that I wouldn't be able to understand people very well if there was a lot of background noise and then I moved on. There wasn't anything I could do about it, anyway.
On the other hand, though, the incident this past week really threw me for a bit of a loop, and I have to admit that I'm still a little confused as to why. I mean, not to sound dramatic or anything, but I wake up every morning and pop a handful of pills designed to make my body as vulnerable as possible to any and all infectious agents, with the hope that such vulnerability will also help protect the foreign organs that currently reside in my chest. I follow this up with shots to ensure my blood doesn't clot and (more often than not for the past few years) several hours spent plugged into high-dose antibiotics that make me walk like a drunken sailor and lose much of the sensation in my face and hands. I'm completely used to checking my blood sugar and giving myself insulin shots at the dinner table by now, and I'm surprisingly cavalier about waltzing around New York City with a needle sticking visibly out of my chest. And given all of this (not to mention the slew of other stuff people with chronic illness face on a daily basis), you'd really think it should take more than a silly beeping thermometer to ruin my day. Right?
Wrong.
That insignificant piece of plastic and its inaudible beep really, really, really pisses me off.
People like to tell us that we should focus on the beautiful little things in life, and also that we shouldn't sweat the small stuff. But I'm the first to admit that, more often than not, I seem to get it the other way around. Lung failure and subsequent open-chest surgery, constant IVs, and a medication schedule that would confuse most pharmacists seems, well, kind of run-of-the-mill to me now. Not to sound blase or anything, but I've been through it, I've seen friends go through it, and I've even learned to laugh at some of the morbid stuff. I had to. But yet I still get angry and defensive when my family (lovingly) teases me about my less-than-perfect performance as a patient in the ICU. I still get mad when my housekeeper rearranges my medicine cabinet (do.not.touch.the.drugs.), and I'm kind of ashamed to even admit how pissed off I get when I can't find a cab in the rain. And yes, even I am aware that the last one on that list is possibly the single whiniest complaint ever. I'm still 100% guilty as charged.
So, yes, it's true that I can ignore a rainbow or a kind smile from a stranger, and still get my day "ruined" by something that I know is, in the grander scheme of things, probably not even that big of a deal. And for the record I'm not saying that hearing loss of any kind at 29 is acceptable, but I am admitting that I'm not quite sure why I choose to focus so much energy on that, rather than on the multitude of other things that are going right (or wrong) at any given moment in my life. I'm not sure why I can handle talking about an infection that nearly killed me, but not about the ICU that saved my life. And I'm not sure why some things seem so much more intense in the moment than they do, say, a couple days down the road -- or even to the person standing 2 feet to the right -- while other things can seem like no big deal at the time, until I work myself into an angry frenzy two days later. I think that for me personally it all comes down to the way I see myself (whether that be as someone who can laugh at a little thermometer or as the world's best ICU patient), but it could just as easily be about trying to put forward an image of the person I wish I could be.
I do know for certain that it's not for me to judge what's big or small in another person's life, especially when I can't even get it completely sorted out in my own. I've also accepted the simple fact that it isn't up to me, at least on the very gut level, what sort of things will leave me chuckling at my own ridiculousness and what will make me cringe every time I hear the story. What is up to me, however, is the way I choose to react to something once it's already happened: how and when I choose to let out my frustration, the conversations I might need to have to solve the problem, and what I might do to minimize my discomfort in the future. I can't necessarily promise that I'll never be caught sweating out the small(er) stuff, but I can choose to ask the question of why something is really bothering me and what the best way is to deal with the problem. And if I'm really strong I might even choose to listen to the answer.
Provided, of course, that I can even hear it.
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
Friday, December 3, 2010
An Open Letter to Everyone I Love
Dear Beautiful People:
Hi again, everyone. This is Piper -- your friend, family member, (ex-)girlfriend, acquaintance, classmate, peer, colleague, student, teacher, or enemy -- writing just to check in and send a little message via this vast cyberspace universe we call the internet. The thing is, I really want to reach out to all of you. I guess because I am, in some ways, someone you might not have met before. And I want you all to know who I am and where I am now...even as I'm still discovering it myself.
First of all, I have to lead with what is quickly becoming my standard catch-phrase: thank you. Thank you for all the times you slowed down to walk with me or drove your cars right up to the doorways of restaurants so I wouldn't have to cross the parking lot. Thank you for pausing the conversation while I coughed, and thank you equally as much for resuming it quickly without any awkward silence when I was finally finished. Thanks for putting up with the treatment machines that took up too much space in our dorm room. Thanks for being in videos for the CFF and for pledging donations to my Great Strides walks. Thank you to everyone who came with me to the doctor just to keep me company, ever. I know that wasn't fun for you, no matter what you said at the time. Thank you for offering me a shoulder to cry on and for not always expecting me to cry. Thank you a million and one times over for never saying "are you sure you can do THAT?" unless it was really, really, really necessary. Thanks for listening. Thank you for telling me I was pretty when I looked way too thin, and thanks for understanding that sometimes eating that extra helping is not so much a privilege: it's just one more chore out of way too many. Thank you for being with me and teaching me so so much more than I could ever repeat here -- from basics like how to ride a bike to more advanced stuff like all the words to "Gangsta's Paradise" by Coolio. Thanks for not teasing me that I once listened to Coolio. Thanks for dragging me to all those concerts I didn't want to go to and for making me see that electronica just might be a valid form of music...maybe. Thank you for all the lessons you have yet to bestow, of which I am quite positive there are many.
In other words, just thanks to everyone. You have enriched my life beyond measure.
To those I have ever fought with, I also want you to know that I'm sorry. It's taken me 29 years (and counting) to realize that only really simple questions have easy answers. "Where's the milk?" comes to mind, or maybe "what's the approximate distance in light years from here to the sun?" -- boring stuff like that. Most things worth asking ("what's the best approach to balancing the budget" or "how the heck does my dog continue to gain weight when he's been on a diet for like a year and he's supposed to be a shih-tzu/yorkie mix, for crying out loud?!") are a little more complicated. So I am sorry -- not for voicing my opinion but for any time when I might have made it seem like yours wasn't worth hearing as well. That's not a fun way to have a conversation, and it's something I'm trying to work on, I promise.
Okay, so that's out of the way. Now on to the more exciting stuff.
This past year has sucked. I can freely acknowledge that fact now, much as it pains me to admit that an entire year of my life was, generally speaking, not a whole lot of fun. And that is painful. I feel a little bit cheated, honestly. I liked where I was and where I was going before this whole house of cards collapsed on top of me, and sometimes it's tough to look around at the rubble and say "huh, well at least it wasn't made of heavy rocks." Don't get me wrong, I do try to be positive, but I'm also willing to be realistic from time to time. And I would say that having one single solitary month with zero IV antibiotics in the past two years is a little sucky. It just wasn't very enjoyable, despite individual moments that were, of course, major exceptions (and most of those were due to you guys anyway, so you already know about them).
Right now, though, as I sit pounding these keys way too late at night despite the fact that I need to get up pretty early tomorrow, life decidedly does not suck. Not even close. In fact, I would venture to say that life right now is the opposite of sucky (which, fyi, is totally not to say that it blows). I just finished another round of IV antibiotics tonight and, yes, I do admit that there are still a lot of health-related issues going on in my life. I dare say there might always be a lot of health-related issues going on in my life, though, so honestly I'm not too torn up about the drama right now. But the thing I want to stress is that I feel so profoundly and totally different than I did last December 3rd. I feel, well, I guess one word for it might be "changed." Another might be "really f-ing lucky." You know, whichever one works for you.
There are, of course, the obvious differences. I can breathe -- that's a pretty big one. I do not, for the most part, do "treatments" anymore, aside from IVs and some nebs, neither of which are permanent fixtures in my routine by any means. I don't remember the last time I coughed so hard I threw up, but I know it was at least 6 months ago. I look somewhat different, too, as I have more color and am at least creeping my way toward a healthier weight. Oh, and I sound like an entirely new person. My "cough" now actually makes me laugh, that's how pathetic it sounds to me after that CF monster cough. So there are some very noticeable changes, and I like that -- it shows people how incredible transplant really is, and the importance of oxygen for everything from HR to hair growth.
There are also other, more subtle changes. People don't stare at me in public anymore, which you might not have noticed anyway but believe me -- I did! My dog really likes to cuddle up really close to me, whereas my breathing used to actually make him nervous, which kind of shows how amazing animals are when you think about it. I can stay up this late typing and know that I'll be okay tomorrow, even if I am a bit tired. That one is huge. Oh, and then there's the fact that I feel like I'm a little bit stronger.
Yeah, I said it. Sorry.
Let me be clear: I do not in any way, shape, or form believe that one has to have a lung transplant to be a strong person. Nor do I believe that everyone who has had a lung transplant is somehow miraculously stronger than those who have never had to have a transplant, or had any health problems at all. Frankly, I've always joked that what doesn't kill you, um, doesn't kill you. Anything else is just a bonus. From my experience, people generally rise to the occasion because they have to, not because they're just that amazing. And I, for sure, am a perfect example of this general rule. Which is why I'm so excited about this change and why I feel the need to tell you about it here.
In case you were wondering, here's what I mean by stronger:
-I care a lot more about people other than myself, and I work harder to put myself in their shoes. People have shown me so much love, light, and strength this past year (and before) that if I really stopped to tally the score I'd probably have a nervous breakdown. So I don't do that, but I do try as hard as I can to remember that a little kindness goes a long, long way. I've seen what positivity can do in this world, and I'd rather be a part of that than working against it. I want to be someone people want to be around, and I definitely want to enjoy being around myself. It's an ongoing process, to be sure, but I think I'm making progress.
-I'm happier with who I am, period. No, not because I'm healthier (I am, but I'm still sorting through a lot of issues, so it's not quite like I'm "healthy" all the time). Not because I'm doing more productive things with my time (I am decidedly NOT doing more productive things with my time, much as I enjoy the things I am doing). I think it's because I just figure I fought hard enough to save myself, and others fought right there along with me, so I must be worth saving. I must be worth loving, because people do love me. Okay, that's fine. It doesn't make me amazing, it just makes me human, and that makes me good enough. I'll keep working on my flaws and I'll just try to laugh at it all as I go.
-I know what I can survive, and it's a lot. Frankly, I am one tough chick, no joke. And this is, to be honest, a little surprising to me. I always knew I was assertive to a point, but I rarely considered myself actually all that strong. Strong beliefs, strong opinions, strong body, strong intellect...okay, maybe at various points in my life. But strong as a person? Eh, I had my doubts sometimes. The difference is that now I know, with total certainty, that it is going to take a monsoon of epic (you hear me, Tom? EPIC) proportions to knock my boat out of the water. I'm sure things will still hurt me (and, quite frankly, I think that's good, as I would never want to get so hard that I couldn't get my feelings hurt), but I have all the faith in the world that I will keep sailing. And that, eventually, the seas will calm and I will be happy and whole again -- and maybe even stronger, to boot.
I owe some of these changes to God. I owe some to circumstances, however you believe those come about in our lives. I owe some of them to myself and to the resilient spirit that I now know I posses. And I owe a ton of these -- most, I would say -- to you guys. To the people who have influenced my life and guided my rudder every bit of the way, even if the lessons you taught weren't always what I wanted to learn.
All of which is just to say this: the me that I was, the me that I am now, and the me that I will always be adores you. All of you -- past, present, and future. And some things, at least, will never change.
With love, light, and endless gratitude,
Piper
Hi again, everyone. This is Piper -- your friend, family member, (ex-)girlfriend, acquaintance, classmate, peer, colleague, student, teacher, or enemy -- writing just to check in and send a little message via this vast cyberspace universe we call the internet. The thing is, I really want to reach out to all of you. I guess because I am, in some ways, someone you might not have met before. And I want you all to know who I am and where I am now...even as I'm still discovering it myself.
First of all, I have to lead with what is quickly becoming my standard catch-phrase: thank you. Thank you for all the times you slowed down to walk with me or drove your cars right up to the doorways of restaurants so I wouldn't have to cross the parking lot. Thank you for pausing the conversation while I coughed, and thank you equally as much for resuming it quickly without any awkward silence when I was finally finished. Thanks for putting up with the treatment machines that took up too much space in our dorm room. Thanks for being in videos for the CFF and for pledging donations to my Great Strides walks. Thank you to everyone who came with me to the doctor just to keep me company, ever. I know that wasn't fun for you, no matter what you said at the time. Thank you for offering me a shoulder to cry on and for not always expecting me to cry. Thank you a million and one times over for never saying "are you sure you can do THAT?" unless it was really, really, really necessary. Thanks for listening. Thank you for telling me I was pretty when I looked way too thin, and thanks for understanding that sometimes eating that extra helping is not so much a privilege: it's just one more chore out of way too many. Thank you for being with me and teaching me so so much more than I could ever repeat here -- from basics like how to ride a bike to more advanced stuff like all the words to "Gangsta's Paradise" by Coolio. Thanks for not teasing me that I once listened to Coolio. Thanks for dragging me to all those concerts I didn't want to go to and for making me see that electronica just might be a valid form of music...maybe. Thank you for all the lessons you have yet to bestow, of which I am quite positive there are many.
In other words, just thanks to everyone. You have enriched my life beyond measure.
To those I have ever fought with, I also want you to know that I'm sorry. It's taken me 29 years (and counting) to realize that only really simple questions have easy answers. "Where's the milk?" comes to mind, or maybe "what's the approximate distance in light years from here to the sun?" -- boring stuff like that. Most things worth asking ("what's the best approach to balancing the budget" or "how the heck does my dog continue to gain weight when he's been on a diet for like a year and he's supposed to be a shih-tzu/yorkie mix, for crying out loud?!") are a little more complicated. So I am sorry -- not for voicing my opinion but for any time when I might have made it seem like yours wasn't worth hearing as well. That's not a fun way to have a conversation, and it's something I'm trying to work on, I promise.
Okay, so that's out of the way. Now on to the more exciting stuff.
This past year has sucked. I can freely acknowledge that fact now, much as it pains me to admit that an entire year of my life was, generally speaking, not a whole lot of fun. And that is painful. I feel a little bit cheated, honestly. I liked where I was and where I was going before this whole house of cards collapsed on top of me, and sometimes it's tough to look around at the rubble and say "huh, well at least it wasn't made of heavy rocks." Don't get me wrong, I do try to be positive, but I'm also willing to be realistic from time to time. And I would say that having one single solitary month with zero IV antibiotics in the past two years is a little sucky. It just wasn't very enjoyable, despite individual moments that were, of course, major exceptions (and most of those were due to you guys anyway, so you already know about them).
Right now, though, as I sit pounding these keys way too late at night despite the fact that I need to get up pretty early tomorrow, life decidedly does not suck. Not even close. In fact, I would venture to say that life right now is the opposite of sucky (which, fyi, is totally not to say that it blows). I just finished another round of IV antibiotics tonight and, yes, I do admit that there are still a lot of health-related issues going on in my life. I dare say there might always be a lot of health-related issues going on in my life, though, so honestly I'm not too torn up about the drama right now. But the thing I want to stress is that I feel so profoundly and totally different than I did last December 3rd. I feel, well, I guess one word for it might be "changed." Another might be "really f-ing lucky." You know, whichever one works for you.
There are, of course, the obvious differences. I can breathe -- that's a pretty big one. I do not, for the most part, do "treatments" anymore, aside from IVs and some nebs, neither of which are permanent fixtures in my routine by any means. I don't remember the last time I coughed so hard I threw up, but I know it was at least 6 months ago. I look somewhat different, too, as I have more color and am at least creeping my way toward a healthier weight. Oh, and I sound like an entirely new person. My "cough" now actually makes me laugh, that's how pathetic it sounds to me after that CF monster cough. So there are some very noticeable changes, and I like that -- it shows people how incredible transplant really is, and the importance of oxygen for everything from HR to hair growth.
There are also other, more subtle changes. People don't stare at me in public anymore, which you might not have noticed anyway but believe me -- I did! My dog really likes to cuddle up really close to me, whereas my breathing used to actually make him nervous, which kind of shows how amazing animals are when you think about it. I can stay up this late typing and know that I'll be okay tomorrow, even if I am a bit tired. That one is huge. Oh, and then there's the fact that I feel like I'm a little bit stronger.
Yeah, I said it. Sorry.
Let me be clear: I do not in any way, shape, or form believe that one has to have a lung transplant to be a strong person. Nor do I believe that everyone who has had a lung transplant is somehow miraculously stronger than those who have never had to have a transplant, or had any health problems at all. Frankly, I've always joked that what doesn't kill you, um, doesn't kill you. Anything else is just a bonus. From my experience, people generally rise to the occasion because they have to, not because they're just that amazing. And I, for sure, am a perfect example of this general rule. Which is why I'm so excited about this change and why I feel the need to tell you about it here.
In case you were wondering, here's what I mean by stronger:
-I care a lot more about people other than myself, and I work harder to put myself in their shoes. People have shown me so much love, light, and strength this past year (and before) that if I really stopped to tally the score I'd probably have a nervous breakdown. So I don't do that, but I do try as hard as I can to remember that a little kindness goes a long, long way. I've seen what positivity can do in this world, and I'd rather be a part of that than working against it. I want to be someone people want to be around, and I definitely want to enjoy being around myself. It's an ongoing process, to be sure, but I think I'm making progress.
-I'm happier with who I am, period. No, not because I'm healthier (I am, but I'm still sorting through a lot of issues, so it's not quite like I'm "healthy" all the time). Not because I'm doing more productive things with my time (I am decidedly NOT doing more productive things with my time, much as I enjoy the things I am doing). I think it's because I just figure I fought hard enough to save myself, and others fought right there along with me, so I must be worth saving. I must be worth loving, because people do love me. Okay, that's fine. It doesn't make me amazing, it just makes me human, and that makes me good enough. I'll keep working on my flaws and I'll just try to laugh at it all as I go.
-I know what I can survive, and it's a lot. Frankly, I am one tough chick, no joke. And this is, to be honest, a little surprising to me. I always knew I was assertive to a point, but I rarely considered myself actually all that strong. Strong beliefs, strong opinions, strong body, strong intellect...okay, maybe at various points in my life. But strong as a person? Eh, I had my doubts sometimes. The difference is that now I know, with total certainty, that it is going to take a monsoon of epic (you hear me, Tom? EPIC) proportions to knock my boat out of the water. I'm sure things will still hurt me (and, quite frankly, I think that's good, as I would never want to get so hard that I couldn't get my feelings hurt), but I have all the faith in the world that I will keep sailing. And that, eventually, the seas will calm and I will be happy and whole again -- and maybe even stronger, to boot.
I owe some of these changes to God. I owe some to circumstances, however you believe those come about in our lives. I owe some of them to myself and to the resilient spirit that I now know I posses. And I owe a ton of these -- most, I would say -- to you guys. To the people who have influenced my life and guided my rudder every bit of the way, even if the lessons you taught weren't always what I wanted to learn.
All of which is just to say this: the me that I was, the me that I am now, and the me that I will always be adores you. All of you -- past, present, and future. And some things, at least, will never change.
With love, light, and endless gratitude,
Piper
Wednesday, November 10, 2010
What I've Learned (So Far)
Alright, so when we last left off I believe I was on IVs for pseduo and aspergillus, and they had recently discovered mycobacteria in my lungs as well. Of course, a lot has happened in the weeks since then, most of which is far too boring to repeat here -- a fact for which I am eternally grateful. So I'll just stick to the highlights (and lowlights, as the case may be):
-The mycobacteria was identified. I had a CT scan which did, in fact, show a few nodules in my lungs. However, nothing too concerning, so we decided that at this point, it's probably better not to treat the pesky stuff. We're hoping the nodules will disappear on their own (I know many people who have had this happen, so I'm pretty optimistic). My theory is that I will walk through fire, if need be, to keep these lungs healthy, but I also trust my doctors and know that sometimes a nodule is just...well, a nodule. And it's gonna take more than a nodule to bring me down, I promise you all that.
- Unfortunately, the very clinic visit that brought news of the apparently benign nodules, also brought a nasal swab due to a cough/runny nose combo. The nasal swab itself was comical, mostly because my poor doctor clearly doesn't enjoy inflicting discomfort, whereas I have CF and kind of just wanted to take him by the hand and explain that I've had about 600,000 of these things in my nearly 29 years on this earth and really just don't care. Luckily we got through it together (classic doctor/patient teamwork on that one), but unluckily the result showed parainfluenza -- a pretty common virus that tends to cause the common cold, but in transplant patients can be far more complicated. So I got to add an oral antiviral to my 3 oral antibiotics, 1 oral antifungal, 2 nebulized antibiotic/antifungal meds, and three IVs.
-On the plus side, even that didn't stop me from sharing a fantastic weekend with my beautiful cousin Gloria, who came to visit and enjoy everything from Dylan's Candy Bar here in NYC t0 a Broadway show. Really, is there anything better than family? On top of that, Gloria and her husband and 4 beautiful kids have participated in TONS of CF fundraising and activities this year. They have been an incredible support for me and the members of my immediate family (as have all my extended family members) and they deserve special recognition for the kindness and love they spread like wildfire everywhere they go. I am blessed beyond measure by my family, and I can't say it enough.
-I eventually came off theses drugs, and one-by-one they started dropping like flies. Seriously, is there any better feeling than tossing that empty prescription bottle? Or pulling that IV needle out of your port and jumping in a hot shower? Answer: yes. The better feeling is getting your energy back, feeling on top of the world again, and being able to eat everything in sight. That, my friends, is pretty indescribable.
-But sometimes even hard-won victories are short-lived. Which is why, today, I had a repeat bronch to make sure all the bacteria were gone. And unfortunately, they are not. There is a LOT less of them, which is awesome, but in the world of pseudomonas and new lungs, better is rarely good enough. All of which means that I will be restarting IVs this week, though hopefully on a much smaller scale. I'm just waiting to hear from the doctor about what drugs we're going to use and for how long. The silver lining is that we're on the right track, and the nodules (while still there) have yet to cause any issues.
My doctor did say that this sort of infection cycle is not uncommon in CFers immediately post-transplant. He isn't concerned, which gives me a lot of confidence, and he thinks that we just have to get over these humps to get to the other side. I may have mentioned before that I think I have a fantastic transplant team, and I trust them wholeheartedly to wipe out whatever is growing in there. Plus I'm pretty sure this psuedo wasn't counting on my total determination to kick its butt when it decided to attack my lungs. Bad move, bacteria. Better luck next time.
But the most important event of these past few weeks can't really be captured in a bullet point. Basically, this whole roller coaster of up and down and infection and meds and viruses and life and everything in between forced me to somehow reexamine what I thought transplant would be like. I know it sounds weird that I'm almost 5 months post-transplant and talking about my expectations for life after surgery (guess I'm a bit of a slow learner!), but the truth is I think it's taken me this long to even wrap my head around what has happened to my body. Around all that I've won and all that I've lost. Around all the blessings and all the challenges. Around the partnership between me and the wonderful Donor Bob. Around...life?
The fact of the matter is that transplant isn't perfect. There, I said it. And I mean it. More and more I'm learning that transplant is a mixed bag -- a lot of very wonderful things and a lot of annoying, sad, or downright scary things. Which is okay, really, because what thing in life doesn't come with a few kinks in the line? What experience worth having has ever been super easy? So while sometimes (like now, when I've been fighting pseudo for over a month), I still feel more or less like I did when I had CF lungs, there are other days when I feel like I could literally climb Everest if I had a warm enough jacket. And somehow that works for me. That balance, imperfect as it might be, is really all I need. I'm pretty sure perfection wouldn't suit me very well anyway. That said, I'm willing to try it if I get the chance (hint, hint, right God?).
The thing about where my life is now, in my opinion, is that it's really...well...normal. It's pretty run of the mill in a lot of ways. True, most people aren't immuno-suppressed. They can order raw fish in restaurants and they can go to crowded concerts without a thought. They also probably didn't have a bronch today, just as they probably won't have one ever, and they aren't breathing with someone else's lungs. They might have never been on IV antibiotics and they don't spend much time in hospitals if they're lucky. So when I say my life is "normal", rest assured that I don't mean that my life is the same as your typical 28-year-old's. It's not.
But it is similar to other people's lives in the sense that everyone faces this kind of thing, albeit on varying scales. Everyone goes through highs and lows, and everyone has disappointments and struggles. The more I live with these new lungs, the more blessed I feel to know that my story, in many ways, is pretty much what we call life. It's comforting to know that although our stories are uniquely ours, they are also, in many ways, one and the same. I'm not going to claim that I'm perfect at remembering that all the time, but I am getting better, and that's one lesson I'm insanely grateful to have had these extra 5 months to learn.
None of which is to say it's not frustrating to have to restart IVs, or go to a last-minute bronch, or deal with scheduling snafus or waiting rooms or whatever other challenges life decides to throw at you. These things are annoying, and frankly I think it's okay to react to them -- up to a point. But in the end I might venture to say that maybe these challenges help keep life interesting, and even more importantly: maybe they're not any better or any worse than what anyone else is going through. Maybe we can learn how to feel our own pain and summit our own mountains without comparing them to the hurt or the obstacles faced by others, and while still supporting others in their climbs. And maybe the best thing we can all do to honor our collective struggle is to trust that together, we'll probably make it through. Or at the very least, have a whole lot of fun trying.
And at the end of the day, there is in fact an "I" in "community", but it's only one letter out of many.
With love and light.
-The mycobacteria was identified. I had a CT scan which did, in fact, show a few nodules in my lungs. However, nothing too concerning, so we decided that at this point, it's probably better not to treat the pesky stuff. We're hoping the nodules will disappear on their own (I know many people who have had this happen, so I'm pretty optimistic). My theory is that I will walk through fire, if need be, to keep these lungs healthy, but I also trust my doctors and know that sometimes a nodule is just...well, a nodule. And it's gonna take more than a nodule to bring me down, I promise you all that.
- Unfortunately, the very clinic visit that brought news of the apparently benign nodules, also brought a nasal swab due to a cough/runny nose combo. The nasal swab itself was comical, mostly because my poor doctor clearly doesn't enjoy inflicting discomfort, whereas I have CF and kind of just wanted to take him by the hand and explain that I've had about 600,000 of these things in my nearly 29 years on this earth and really just don't care. Luckily we got through it together (classic doctor/patient teamwork on that one), but unluckily the result showed parainfluenza -- a pretty common virus that tends to cause the common cold, but in transplant patients can be far more complicated. So I got to add an oral antiviral to my 3 oral antibiotics, 1 oral antifungal, 2 nebulized antibiotic/antifungal meds, and three IVs.
-On the plus side, even that didn't stop me from sharing a fantastic weekend with my beautiful cousin Gloria, who came to visit and enjoy everything from Dylan's Candy Bar here in NYC t0 a Broadway show. Really, is there anything better than family? On top of that, Gloria and her husband and 4 beautiful kids have participated in TONS of CF fundraising and activities this year. They have been an incredible support for me and the members of my immediate family (as have all my extended family members) and they deserve special recognition for the kindness and love they spread like wildfire everywhere they go. I am blessed beyond measure by my family, and I can't say it enough.
-I eventually came off theses drugs, and one-by-one they started dropping like flies. Seriously, is there any better feeling than tossing that empty prescription bottle? Or pulling that IV needle out of your port and jumping in a hot shower? Answer: yes. The better feeling is getting your energy back, feeling on top of the world again, and being able to eat everything in sight. That, my friends, is pretty indescribable.
-But sometimes even hard-won victories are short-lived. Which is why, today, I had a repeat bronch to make sure all the bacteria were gone. And unfortunately, they are not. There is a LOT less of them, which is awesome, but in the world of pseudomonas and new lungs, better is rarely good enough. All of which means that I will be restarting IVs this week, though hopefully on a much smaller scale. I'm just waiting to hear from the doctor about what drugs we're going to use and for how long. The silver lining is that we're on the right track, and the nodules (while still there) have yet to cause any issues.
My doctor did say that this sort of infection cycle is not uncommon in CFers immediately post-transplant. He isn't concerned, which gives me a lot of confidence, and he thinks that we just have to get over these humps to get to the other side. I may have mentioned before that I think I have a fantastic transplant team, and I trust them wholeheartedly to wipe out whatever is growing in there. Plus I'm pretty sure this psuedo wasn't counting on my total determination to kick its butt when it decided to attack my lungs. Bad move, bacteria. Better luck next time.
But the most important event of these past few weeks can't really be captured in a bullet point. Basically, this whole roller coaster of up and down and infection and meds and viruses and life and everything in between forced me to somehow reexamine what I thought transplant would be like. I know it sounds weird that I'm almost 5 months post-transplant and talking about my expectations for life after surgery (guess I'm a bit of a slow learner!), but the truth is I think it's taken me this long to even wrap my head around what has happened to my body. Around all that I've won and all that I've lost. Around all the blessings and all the challenges. Around the partnership between me and the wonderful Donor Bob. Around...life?
The fact of the matter is that transplant isn't perfect. There, I said it. And I mean it. More and more I'm learning that transplant is a mixed bag -- a lot of very wonderful things and a lot of annoying, sad, or downright scary things. Which is okay, really, because what thing in life doesn't come with a few kinks in the line? What experience worth having has ever been super easy? So while sometimes (like now, when I've been fighting pseudo for over a month), I still feel more or less like I did when I had CF lungs, there are other days when I feel like I could literally climb Everest if I had a warm enough jacket. And somehow that works for me. That balance, imperfect as it might be, is really all I need. I'm pretty sure perfection wouldn't suit me very well anyway. That said, I'm willing to try it if I get the chance (hint, hint, right God?).
The thing about where my life is now, in my opinion, is that it's really...well...normal. It's pretty run of the mill in a lot of ways. True, most people aren't immuno-suppressed. They can order raw fish in restaurants and they can go to crowded concerts without a thought. They also probably didn't have a bronch today, just as they probably won't have one ever, and they aren't breathing with someone else's lungs. They might have never been on IV antibiotics and they don't spend much time in hospitals if they're lucky. So when I say my life is "normal", rest assured that I don't mean that my life is the same as your typical 28-year-old's. It's not.
But it is similar to other people's lives in the sense that everyone faces this kind of thing, albeit on varying scales. Everyone goes through highs and lows, and everyone has disappointments and struggles. The more I live with these new lungs, the more blessed I feel to know that my story, in many ways, is pretty much what we call life. It's comforting to know that although our stories are uniquely ours, they are also, in many ways, one and the same. I'm not going to claim that I'm perfect at remembering that all the time, but I am getting better, and that's one lesson I'm insanely grateful to have had these extra 5 months to learn.
None of which is to say it's not frustrating to have to restart IVs, or go to a last-minute bronch, or deal with scheduling snafus or waiting rooms or whatever other challenges life decides to throw at you. These things are annoying, and frankly I think it's okay to react to them -- up to a point. But in the end I might venture to say that maybe these challenges help keep life interesting, and even more importantly: maybe they're not any better or any worse than what anyone else is going through. Maybe we can learn how to feel our own pain and summit our own mountains without comparing them to the hurt or the obstacles faced by others, and while still supporting others in their climbs. And maybe the best thing we can all do to honor our collective struggle is to trust that together, we'll probably make it through. Or at the very least, have a whole lot of fun trying.
And at the end of the day, there is in fact an "I" in "community", but it's only one letter out of many.
With love and light.
Saturday, September 4, 2010
On Mistakes and Magic Markers
When I was very young -- like, say, four or five years old -- my mother decided to have a very special chair reupholstered and placed in my bedroom. The reason this chair was special is that it had been my mother's childhood chair -- a beautiful mini-armchair that my mother chose to cover in bright pastel stripes appropriate for her little girl. I still remember the chair pretty vividly even now, which is a testament to how much I liked that single piece of furniture since the rest of my bedroom has grown a bit hazy over time.
On the day the newly covered chair was delivered to our house, my parents hosted a small dinner party. At some point during the evening I was alone in my room, either because I had been told to play quietly or possibly because I was supposed to be sleeping. Either way, I was alone. With the chair. And apparently also with a contraband black permanent marker, most likely filched from the kitchen counter with a stealth that would have made a professional burglar jealous. Cue the scary music because I think we all know what happened next.
My father eventually came to check on his sleeping angel, as parents tend to do. And when he found me I was apparently in the throes of artistic inspiration -- gleefully covering my new chair with dark blots in random patterns a la some deranged Jackson Pollack, or perhaps a paint-by-numbers gone horribly, horribly wrong. In either case, my mother was summoned to the room to inspect my masterpiece, whereupon she immediately burst into tears that, surprisingly enough, did not appear to be tears of joy at my brilliance. And I believe that was when my father turned to me, a stern look on his face, and asked me a version of the same question that parents have been asking their kids ever since Adam and Eve looked around and saw that the garden was a complete pigsty:
"Why, Piper? Why would you color all over your mother's chair with black marker?"
And tiny me, without hesitation, answered simply:
"Because I prefer darker colors."
I've been told this story about a million times. According to my mother, this was the point at which my father burst out laughing and I managed to get off with virtually no punishment, despite the fact that the chair had to be sent back to the shop for another reupholstering. In my dad's version, this was the moment at which he knew I would one day go to law school. My sister uses this story to prove that her childhood antics (which once included signing her name in paint all over the house and trying to blame the sleeping infant me for the damage) were nothing compared to mine. And my godmother likes to tell the story just because it makes her smile to think of my sister and me at that age. But whatever the motive, it's definitely become part of the Beatty family folklore.
My interpretation of this story is a little different. I see in it two things: 1) the fact that I tend to think things through before I do them (because I doubt my young self would have been able to come up with such a logical excuse on the fly had it not been my true motivation), and 2) just because something makes sense in my head, that doesn't always make it the right thing to do.
It's just too bad I haven't always been able to channel this lesson in my own life, right?
I've noticed lately that post-transplant living is nothing so much as one great big balancing act. The wire is wobbly and the stakes are high -- a single misstep, however good the intentions behind the act, could spell disaster. At the same time, perfection is pretty much impossible. The job itself is complicated. Mistakes will be made. And while standing straight and still in the middle of the wire might be the safest approach in terms of not falling, it will also mean that you never perform the trick you set out to master. That ultimate trick of living your life with grace, gratitude, and maybe even a little bit of style if you're lucky.
There are a few events that sparked this realization, but honestly I don't want to get into them here. Because the events themselves, although they seemed like huge deals to me at the time, were really just a drop in the bucket. The bigger issue, for me at least, is the reality that I have to find a way to live with these things -- with immuno-suppression and side effects and awkward conversations and, yes, mistakes. Like it or not, these are all part of my life now. They're here, and they're not going anywhere anytime soon, if ever. And it's 100% up to me to learn how to identify risks, how to be wary of the danger without standing still altogether, and how to both accept the mistakes I do make and correct them in the future. I have to be both my harshest critic and able to forgive myself in order to move on. And that, my friends, isn't always easy.
So I guess I find myself back in front of the chair, and once again holding that proverbial marker in my hand. Only this time, instead of just asking what I want, I have to ask what is best for all involved: who will I hurt, what will this cost me and my family, is there perhaps someone more knowledgeable on the subject of furniture upholstery that I should consult before making this decision, will I be sad if things don't turn out the way that I expect, can the damage be undone? These are just a few of the questions I want to ask my tiny childhood self. And at the same time, I hope I can maintain the courage to still nourish that inner artist (however misguided she might have been -- I mean, seriously, a black sharpie??) and give her space to continue living and expressing and creating and thinking and playing. Just, you know, preferably on a more appropriate canvas.
So thanks to God, my doctors, and my donor for the chance to make even more mistakes in my life. And a long-overdue thanks to my amazing mom for the beautiful chair.
On the day the newly covered chair was delivered to our house, my parents hosted a small dinner party. At some point during the evening I was alone in my room, either because I had been told to play quietly or possibly because I was supposed to be sleeping. Either way, I was alone. With the chair. And apparently also with a contraband black permanent marker, most likely filched from the kitchen counter with a stealth that would have made a professional burglar jealous. Cue the scary music because I think we all know what happened next.
My father eventually came to check on his sleeping angel, as parents tend to do. And when he found me I was apparently in the throes of artistic inspiration -- gleefully covering my new chair with dark blots in random patterns a la some deranged Jackson Pollack, or perhaps a paint-by-numbers gone horribly, horribly wrong. In either case, my mother was summoned to the room to inspect my masterpiece, whereupon she immediately burst into tears that, surprisingly enough, did not appear to be tears of joy at my brilliance. And I believe that was when my father turned to me, a stern look on his face, and asked me a version of the same question that parents have been asking their kids ever since Adam and Eve looked around and saw that the garden was a complete pigsty:
"Why, Piper? Why would you color all over your mother's chair with black marker?"
And tiny me, without hesitation, answered simply:
"Because I prefer darker colors."
I've been told this story about a million times. According to my mother, this was the point at which my father burst out laughing and I managed to get off with virtually no punishment, despite the fact that the chair had to be sent back to the shop for another reupholstering. In my dad's version, this was the moment at which he knew I would one day go to law school. My sister uses this story to prove that her childhood antics (which once included signing her name in paint all over the house and trying to blame the sleeping infant me for the damage) were nothing compared to mine. And my godmother likes to tell the story just because it makes her smile to think of my sister and me at that age. But whatever the motive, it's definitely become part of the Beatty family folklore.
My interpretation of this story is a little different. I see in it two things: 1) the fact that I tend to think things through before I do them (because I doubt my young self would have been able to come up with such a logical excuse on the fly had it not been my true motivation), and 2) just because something makes sense in my head, that doesn't always make it the right thing to do.
It's just too bad I haven't always been able to channel this lesson in my own life, right?
I've noticed lately that post-transplant living is nothing so much as one great big balancing act. The wire is wobbly and the stakes are high -- a single misstep, however good the intentions behind the act, could spell disaster. At the same time, perfection is pretty much impossible. The job itself is complicated. Mistakes will be made. And while standing straight and still in the middle of the wire might be the safest approach in terms of not falling, it will also mean that you never perform the trick you set out to master. That ultimate trick of living your life with grace, gratitude, and maybe even a little bit of style if you're lucky.
There are a few events that sparked this realization, but honestly I don't want to get into them here. Because the events themselves, although they seemed like huge deals to me at the time, were really just a drop in the bucket. The bigger issue, for me at least, is the reality that I have to find a way to live with these things -- with immuno-suppression and side effects and awkward conversations and, yes, mistakes. Like it or not, these are all part of my life now. They're here, and they're not going anywhere anytime soon, if ever. And it's 100% up to me to learn how to identify risks, how to be wary of the danger without standing still altogether, and how to both accept the mistakes I do make and correct them in the future. I have to be both my harshest critic and able to forgive myself in order to move on. And that, my friends, isn't always easy.
So I guess I find myself back in front of the chair, and once again holding that proverbial marker in my hand. Only this time, instead of just asking what I want, I have to ask what is best for all involved: who will I hurt, what will this cost me and my family, is there perhaps someone more knowledgeable on the subject of furniture upholstery that I should consult before making this decision, will I be sad if things don't turn out the way that I expect, can the damage be undone? These are just a few of the questions I want to ask my tiny childhood self. And at the same time, I hope I can maintain the courage to still nourish that inner artist (however misguided she might have been -- I mean, seriously, a black sharpie??) and give her space to continue living and expressing and creating and thinking and playing. Just, you know, preferably on a more appropriate canvas.
So thanks to God, my doctors, and my donor for the chance to make even more mistakes in my life. And a long-overdue thanks to my amazing mom for the beautiful chair.
Monday, June 28, 2010
Here's The Tricky Part
I made it.
Just got home from my first post-transplant clinic day, and I don't mind telling you all that it was...exhausting? Exhilarating? All of the above?
Okay, let's just go with intense. And new.
The newness of it threw me for a bit of a loop right off the bat, actually. I knew not to take prograf (anti-rejection drug) the morning of clinic before my blood draws, but I immediately got confused on whether I was allowed to eat beforehand, or whether I should take my insulin (sidenote here: I've been on insulin since the transplant to deal with high blood sugars, most likely caused by the high-dose steroids I'm on right now). Figuring better safe than sorry, I held off on everything until after the blood draws, which then left me scrambling for a clean, private place to test my sugars, inject insulin, and then eat a quick breakfast before moving on to my next clinic activity. Turns out I could have eaten in the morning and saved myself the trouble. Whoops. Oh well, did I mention there's a bit of a learning curve here?
Anyway, confusion aside, everything ran pretty smoothly. Col Pres does blood draws (with drug levels), chest x-ray, and then PFTs -- all of which are done on a walk-in basis before you get to your actualy transplant doctor. So since my transplant appt was for 10 AM, I showed up to the hospital at about 8 AM to get the other things out of the way first. I got my blood drawn (veins still bad, but what else is new?), did my x-ray without issue, and then headed over to the PFT lab, where I was lucky enough to meet a woman coming up on her 2 year anniversary of transplant. She and I chatted for a while about everything from time onthe list to transplant recovery to going back to work -- it really is amazing to feel part of the "transplant club" at last! Then I got called back and headed in for my first PFTs with my new lungs, ever.
Now, keep in mind that, as my doctor reminded me, many people haven't even left the hospital by 2 weeks out, much less blown PFTs yet. So this was kind of a test run just to see where we were, and how the new lungs were responding to my cues, etc. Suffice it to say, I was beyond nervous and excited to see how I was doing. And then came the big moment...
45% FEV1.
Wow. I can hardly believe that number, and I keep going back to my PFTs to stare at it. More than that, I can't believe the beautiful arc that my flow chart showed, especially considering that my lungs still feel compressed by my scar and my chest. It was so amazing, so life affirming, to blow that number and know that these PFTs will just keep going up (God willing). Obviously life is about so much more than the numbers, but I have to admit: it feels darn good to get some good ones for once.
Then came clinic itself, and that's where things got a tiny bit more complicated.
First of all, I just want to say that my clinic is amazing. My doctors are fabulous, the coordinators were excellent, and the experience overall was very friendly and reassuring. Everyone told me I looked great, was progressing well, and was doing a good job taking care of my new lungs. My heartrate was a bit high, which tends to be an issue with me, and we are going to try some things to get a better handle on it, including an appointment with a cardiologist at Columbia. I feel better having had the conversation about that, though, so hopefully we're already on track for smoother sailing on that front.
The other issue was that my bronch last Friday showed some A1 level inflammation/rejection, so I have to go on a prednisone burst.
I thought that surely the first time I heard the word "rejection" I would freak out. I thought it would send me into a minor tailspin even though I told myself (and I have been told repeatedly) that some minor acute rejection in the first months is common. I thought that I would have to talk myself down from the ledges.
But I didn't, really.
I'm disappointed, of course. I wish there was zero inflammation issues in my beautiful new lungs. I would love to continue on my gleeful little course of no bacteria and no other problems. But as far as issues go, I also recognize this as treatable, under control, and not a huge catastrophe. I mean sure, I broke out into a sweat when I first heard, and I definitely had (and probably will continue to have) a few moments of "oh wow, really?!" But overall, I'm mostly concerned with the lack of sleep I know is coming from the prednisone taper than I am with whether this will be resolved. I feel entirely confident that I will get through this and that it is not a sign of bad things to come. Maybe it's that 45% holding me up, but I know these lungs and I were meant to be together, and I'm willing to take the bumps in the road, especially considering I have no choice.
I realized today that I have a huge amount of trust in my transplant team -- in their ability, their kindness, and their wisdom. This is huge, and makes, in my opinion, all the difference in the world. I also have an incredible support system in my family, and my mother's strength today was a huge reminder of that. She helped me calm down after the insulin debacle (I was a little stressed at that point, to put it mildly), helped me get from place to place and navigate the maze that is clinic visit #1, and helped take notes through the clinic itself. Now that we're home and watching Wimbleton on TV, she's finally get some well-deserved rest.
I guess the lesson for today is that things don't always go exactly as we plan them, even when we think it's going to be something as easy as clinic. But when the dust settles, hopefully we'll have learned something about ourselves, and maybe even about the people who help us through it all.
And if we have to lose some sleep over it all, well, at least that's another hour in the day to just be grateful.
Just got home from my first post-transplant clinic day, and I don't mind telling you all that it was...exhausting? Exhilarating? All of the above?
Okay, let's just go with intense. And new.
The newness of it threw me for a bit of a loop right off the bat, actually. I knew not to take prograf (anti-rejection drug) the morning of clinic before my blood draws, but I immediately got confused on whether I was allowed to eat beforehand, or whether I should take my insulin (sidenote here: I've been on insulin since the transplant to deal with high blood sugars, most likely caused by the high-dose steroids I'm on right now). Figuring better safe than sorry, I held off on everything until after the blood draws, which then left me scrambling for a clean, private place to test my sugars, inject insulin, and then eat a quick breakfast before moving on to my next clinic activity. Turns out I could have eaten in the morning and saved myself the trouble. Whoops. Oh well, did I mention there's a bit of a learning curve here?
Anyway, confusion aside, everything ran pretty smoothly. Col Pres does blood draws (with drug levels), chest x-ray, and then PFTs -- all of which are done on a walk-in basis before you get to your actualy transplant doctor. So since my transplant appt was for 10 AM, I showed up to the hospital at about 8 AM to get the other things out of the way first. I got my blood drawn (veins still bad, but what else is new?), did my x-ray without issue, and then headed over to the PFT lab, where I was lucky enough to meet a woman coming up on her 2 year anniversary of transplant. She and I chatted for a while about everything from time onthe list to transplant recovery to going back to work -- it really is amazing to feel part of the "transplant club" at last! Then I got called back and headed in for my first PFTs with my new lungs, ever.
Now, keep in mind that, as my doctor reminded me, many people haven't even left the hospital by 2 weeks out, much less blown PFTs yet. So this was kind of a test run just to see where we were, and how the new lungs were responding to my cues, etc. Suffice it to say, I was beyond nervous and excited to see how I was doing. And then came the big moment...
45% FEV1.
Wow. I can hardly believe that number, and I keep going back to my PFTs to stare at it. More than that, I can't believe the beautiful arc that my flow chart showed, especially considering that my lungs still feel compressed by my scar and my chest. It was so amazing, so life affirming, to blow that number and know that these PFTs will just keep going up (God willing). Obviously life is about so much more than the numbers, but I have to admit: it feels darn good to get some good ones for once.
Then came clinic itself, and that's where things got a tiny bit more complicated.
First of all, I just want to say that my clinic is amazing. My doctors are fabulous, the coordinators were excellent, and the experience overall was very friendly and reassuring. Everyone told me I looked great, was progressing well, and was doing a good job taking care of my new lungs. My heartrate was a bit high, which tends to be an issue with me, and we are going to try some things to get a better handle on it, including an appointment with a cardiologist at Columbia. I feel better having had the conversation about that, though, so hopefully we're already on track for smoother sailing on that front.
The other issue was that my bronch last Friday showed some A1 level inflammation/rejection, so I have to go on a prednisone burst.
I thought that surely the first time I heard the word "rejection" I would freak out. I thought it would send me into a minor tailspin even though I told myself (and I have been told repeatedly) that some minor acute rejection in the first months is common. I thought that I would have to talk myself down from the ledges.
But I didn't, really.
I'm disappointed, of course. I wish there was zero inflammation issues in my beautiful new lungs. I would love to continue on my gleeful little course of no bacteria and no other problems. But as far as issues go, I also recognize this as treatable, under control, and not a huge catastrophe. I mean sure, I broke out into a sweat when I first heard, and I definitely had (and probably will continue to have) a few moments of "oh wow, really?!" But overall, I'm mostly concerned with the lack of sleep I know is coming from the prednisone taper than I am with whether this will be resolved. I feel entirely confident that I will get through this and that it is not a sign of bad things to come. Maybe it's that 45% holding me up, but I know these lungs and I were meant to be together, and I'm willing to take the bumps in the road, especially considering I have no choice.
I realized today that I have a huge amount of trust in my transplant team -- in their ability, their kindness, and their wisdom. This is huge, and makes, in my opinion, all the difference in the world. I also have an incredible support system in my family, and my mother's strength today was a huge reminder of that. She helped me calm down after the insulin debacle (I was a little stressed at that point, to put it mildly), helped me get from place to place and navigate the maze that is clinic visit #1, and helped take notes through the clinic itself. Now that we're home and watching Wimbleton on TV, she's finally get some well-deserved rest.
I guess the lesson for today is that things don't always go exactly as we plan them, even when we think it's going to be something as easy as clinic. But when the dust settles, hopefully we'll have learned something about ourselves, and maybe even about the people who help us through it all.
And if we have to lose some sleep over it all, well, at least that's another hour in the day to just be grateful.
Saturday, June 5, 2010
Birthdays and Cliches
There's an old cliche that claims that the more things change, the more they stay the same. Like most overused sayings, this one has more or less lost its meaning, at least when it comes to my own life anyway. Whenever some kind soul attempted to impart this particular piece of seemingly outdated wisdom on me I would simply smile, nod, and do my best to politely conceal my internal eyeroll. Because really, change is change, right? No need to get overly philosophical about the whole thing.
Tonight we celebrated my beautiful mother's undisclosed-number birthday (hint: she's older than me, which makes her at least 29). We did this by inviting a few friends here in NYC to a small but lovely little birthday dinner. And it might be worth mentioning that this dinner was held at the same restaurant we celebrated her birthday at last year, which was also the day she came to New York for a short visit and ended up leaving behind (temporarily) her husband, home, dogs, friends, and job for what is now a year-long trip and counting -- all for her daughter who suddenly needed more help dealing with end-stage cystic fibrosis.
Um, yeah, talk about a celebration of love.
I don't brag about my family often enough on this blog, honestly. I mean, sure, I might mention my father's crazy antics that keep us all laughing whenever he visits, or the fact that he's now racked up enough frequent flyer miles between Colorado and New York to take us all on a much-deserved vacation when this is all over. And I know I occasionally make reference to my sister's amazing talent, or the fact that she somehow manages to keep us (mostly) grounded even when we're stuck listening to drunk men in the local ER. I even think that I've touched on how grateful I am to my mom, who lives with me, helps me with errands and IVs and the boundless energy of my puppy (who we joke views her as his personal nanny), and accompanies me to every single appointment, even if it just means waiting in the waiting room for moral support. I say these things, of course, but I never really feel like I say them enough.
There wasn't a whole lot I could do today to make mom's birthday extra special. I just recently started a new course of IVs, which of course means I have an infection, and I spent most of the day coughing or sleeping, and trying to rest up for tonight. But I was able to go with her last night to the bakery to pick out some cakes (yes, she got two -- and I dare anyone to claim she's not entitled, although truth be told both were small and to share). I was able to put on a nice dress, wash my hair and make myself look somewhat pretty, and I was able to go out to a dinner that was all about her, exactly as it should be. In the grand scheme of things these small gestures don't feel like all that much for someone who everyday helps make sure I can breathe, get appropriate exercise, and have everything else I need to live as normal a life as possible under the circumstances. I know I could never repay that gift in a million years, but I'm happy that for tonight at least we were able to show mom a small piece of how amazing she really is.
And as for my gift for the evening, I think it came the second I looked around the table (in the same beautiful dining room we sat in a year ago tonight in what would become my mother's official "welcome to New York" dinner) and saw old Colorado friends, new NY friends, my sister, and my mother enjoying an amazing meal worthy of a one year anniversary and a older-than-28 birthday. Because if I had to surmise this past year in one single word it would probably be "change." We have struggled to find our footing, to hold onto our optimism and our values, and to stay one step ahead of the disease that is slowly upending our lives. And we did it all only to come full circle -- back to love, back to celebration, and back to the simple sharing of an awesome meal and special day with friends.
The more things change, indeed.
- Posted using BlogPress from my iPhone
Tonight we celebrated my beautiful mother's undisclosed-number birthday (hint: she's older than me, which makes her at least 29). We did this by inviting a few friends here in NYC to a small but lovely little birthday dinner. And it might be worth mentioning that this dinner was held at the same restaurant we celebrated her birthday at last year, which was also the day she came to New York for a short visit and ended up leaving behind (temporarily) her husband, home, dogs, friends, and job for what is now a year-long trip and counting -- all for her daughter who suddenly needed more help dealing with end-stage cystic fibrosis.
Um, yeah, talk about a celebration of love.
I don't brag about my family often enough on this blog, honestly. I mean, sure, I might mention my father's crazy antics that keep us all laughing whenever he visits, or the fact that he's now racked up enough frequent flyer miles between Colorado and New York to take us all on a much-deserved vacation when this is all over. And I know I occasionally make reference to my sister's amazing talent, or the fact that she somehow manages to keep us (mostly) grounded even when we're stuck listening to drunk men in the local ER. I even think that I've touched on how grateful I am to my mom, who lives with me, helps me with errands and IVs and the boundless energy of my puppy (who we joke views her as his personal nanny), and accompanies me to every single appointment, even if it just means waiting in the waiting room for moral support. I say these things, of course, but I never really feel like I say them enough.
There wasn't a whole lot I could do today to make mom's birthday extra special. I just recently started a new course of IVs, which of course means I have an infection, and I spent most of the day coughing or sleeping, and trying to rest up for tonight. But I was able to go with her last night to the bakery to pick out some cakes (yes, she got two -- and I dare anyone to claim she's not entitled, although truth be told both were small and to share). I was able to put on a nice dress, wash my hair and make myself look somewhat pretty, and I was able to go out to a dinner that was all about her, exactly as it should be. In the grand scheme of things these small gestures don't feel like all that much for someone who everyday helps make sure I can breathe, get appropriate exercise, and have everything else I need to live as normal a life as possible under the circumstances. I know I could never repay that gift in a million years, but I'm happy that for tonight at least we were able to show mom a small piece of how amazing she really is.
And as for my gift for the evening, I think it came the second I looked around the table (in the same beautiful dining room we sat in a year ago tonight in what would become my mother's official "welcome to New York" dinner) and saw old Colorado friends, new NY friends, my sister, and my mother enjoying an amazing meal worthy of a one year anniversary and a older-than-28 birthday. Because if I had to surmise this past year in one single word it would probably be "change." We have struggled to find our footing, to hold onto our optimism and our values, and to stay one step ahead of the disease that is slowly upending our lives. And we did it all only to come full circle -- back to love, back to celebration, and back to the simple sharing of an awesome meal and special day with friends.
The more things change, indeed.
- Posted using BlogPress from my iPhone
Friday, May 21, 2010
The Forest for the (PFT)rees
I'm going to be honest with you all: at this point most of my days are fairly routine and -- dare I say it? -- even a little bit boring. I spend a lot of my time doing mundane stuff like treatments and airways clearance and IVs and appointments and exercise. It's a dirty job, as they say, but somebody's gotta do it. And by doing all these things I can at least hold out hope that I'll be the best darn Piper I can be for the rest of the time, when I get to do fun stuff like go to dinner with friends or take a walk with my family or even hit up some of that famous NYC shopping. You know, all those things that make the "boring stuff" worth it?
But some days, rare as they might be, are different. Some days are chock full of excitement and mystery and drama and plotlines that could have been lifted straight from your favorite primetime special. Days like today, for instance.
Today I spent my morning battling pure evil.
Well, okay, maybe not really. In reality I spent my morning blowing my lungs out over and over into this little guy:
...and then trying as hard as I could to figure out the results.
What I learned in the process was this:
1) Not all FEV1 calculations are created equal. I found a variation of up to about 5% depending on which formula I used for the calculation. Not cool. And furthermore, some prodding into the lives of my CF friends (because I apparently know no boundaries when it comes to this sort of thing) revealed that most people have some experience with wildly fluctuating FEV1 percent-predicted numbers, be it between their CF clinic and their transplant clinic, their pediatric clinic and their adult clinic, or (worst case scenario) their same clinic from visit to visit. All because the center is using a different formula, not because of any actual change. This made me think that all this "what percent are you?" nonsense is in fact, well, nonsense.
2) Obsessing over numbers will get you nowhere fast (unless where you're going happens to be your local psych ward). Seriously, I'm not kidding when I say that this little machine and I had a full blown battle this morning, one in which the prize was apparently my sanity. I came out the winner, barely, but it was a super tough fight. Granted, I'm sure there are a lot of CFers out there who can properly handle the responsibility of owning a little toy like this without compromising their mental health; I, quite clearly, am not one of them. Bottom line: while testing your FEV1 at home every so often to make sure you're not slipping into some random spiral of decline might be okay, really you should just trust how you feel. Period. Not seeing that one little number go up when you're working hard might just frustrate you right out of your motivational zone, and seeing the number stay the same even as you start to feel terrible might lead you to put off some much-needed treatment.
[Edit to add: I realize that this changes a bit post-transplant and that tracking numbers becomes super important at that point to catch rejection early. This comment is really only geared toward slightly neurotic pre-transplant CFers like me.]
3) I really hate technology. No, seriously. I really, really, really do. (This one is just personal, and has more to do with the hour it took me to properly set the date on the darn machine before it would even allow me to start destroying my inner peace than it does with the actual destruction of said peace. No, I'm not kidding.)
4) If you think my dislike of technology is ridiculous, you should see how I feel about math. Here's a couple of hints: I was an English major in college, I went to law school, and the one college math class I took -- seriously, the only one -- was "game theory" (aka: math for English majors). Seriously, people, I wasted my morning doing math because of this thing! And that's just inexcusable, end of story.
So cue up the cheesy music and let's end this not-made-for-TV movie right here, because I for one have officially removed the batteries from my FEV1 monitor (and since replacing them would mean resetting the date, I think that means I'm pretty safe). And like all good dramas, I guess this one ends with a lesson, which is don't lose sight of the forest for the trees. Or for the PFTs, for that matter. Because at the end of the day it really is how you feel that makes a difference, and putting too much weight on any one little detail of that is the first step to missing what really matters.
And a PFT ain't nothin' but a number.
But some days, rare as they might be, are different. Some days are chock full of excitement and mystery and drama and plotlines that could have been lifted straight from your favorite primetime special. Days like today, for instance.
Today I spent my morning battling pure evil.
Well, okay, maybe not really. In reality I spent my morning blowing my lungs out over and over into this little guy:
...and then trying as hard as I could to figure out the results.
What I learned in the process was this:
1) Not all FEV1 calculations are created equal. I found a variation of up to about 5% depending on which formula I used for the calculation. Not cool. And furthermore, some prodding into the lives of my CF friends (because I apparently know no boundaries when it comes to this sort of thing) revealed that most people have some experience with wildly fluctuating FEV1 percent-predicted numbers, be it between their CF clinic and their transplant clinic, their pediatric clinic and their adult clinic, or (worst case scenario) their same clinic from visit to visit. All because the center is using a different formula, not because of any actual change. This made me think that all this "what percent are you?" nonsense is in fact, well, nonsense.
2) Obsessing over numbers will get you nowhere fast (unless where you're going happens to be your local psych ward). Seriously, I'm not kidding when I say that this little machine and I had a full blown battle this morning, one in which the prize was apparently my sanity. I came out the winner, barely, but it was a super tough fight. Granted, I'm sure there are a lot of CFers out there who can properly handle the responsibility of owning a little toy like this without compromising their mental health; I, quite clearly, am not one of them. Bottom line: while testing your FEV1 at home every so often to make sure you're not slipping into some random spiral of decline might be okay, really you should just trust how you feel. Period. Not seeing that one little number go up when you're working hard might just frustrate you right out of your motivational zone, and seeing the number stay the same even as you start to feel terrible might lead you to put off some much-needed treatment.
[Edit to add: I realize that this changes a bit post-transplant and that tracking numbers becomes super important at that point to catch rejection early. This comment is really only geared toward slightly neurotic pre-transplant CFers like me.]
3) I really hate technology. No, seriously. I really, really, really do. (This one is just personal, and has more to do with the hour it took me to properly set the date on the darn machine before it would even allow me to start destroying my inner peace than it does with the actual destruction of said peace. No, I'm not kidding.)
4) If you think my dislike of technology is ridiculous, you should see how I feel about math. Here's a couple of hints: I was an English major in college, I went to law school, and the one college math class I took -- seriously, the only one -- was "game theory" (aka: math for English majors). Seriously, people, I wasted my morning doing math because of this thing! And that's just inexcusable, end of story.
So cue up the cheesy music and let's end this not-made-for-TV movie right here, because I for one have officially removed the batteries from my FEV1 monitor (and since replacing them would mean resetting the date, I think that means I'm pretty safe). And like all good dramas, I guess this one ends with a lesson, which is don't lose sight of the forest for the trees. Or for the PFTs, for that matter. Because at the end of the day it really is how you feel that makes a difference, and putting too much weight on any one little detail of that is the first step to missing what really matters.
And a PFT ain't nothin' but a number.
Thursday, May 13, 2010
Reach Out and Hug Someone
In my now 8+ months of navigating the ins and outs of transplant, I've learned a couple of important lessons. Some of these lessons, like the obvious "cherish each breath," or the slightly less obvious (but equally important) "never let your dad go out bike riding by himself in the middle of Manhattan after the dry run from hell," have proved invaluable and will no doubt have a long-lasting impact on my life (not to mention my father's).
Others, well...let's just say that not all lessons are created equal.
I'm not really sure what the value was in learning, for example, that "shoes and pillows will randomly go missing in the hospital." True, this is a fact of life that all chronic patients will eventually have to deal with: stuff does indeed sometimes get lost in the craziness that is a hospital admission. On the other hand, did I really need to sacrifice a perfectly good pair of Pumas and my sister's favorite bed pillow for that lesson? I doubt it.
Still, though, lessons are lessons, and I've been trying to take the good from all of them, no matter how ridiculous they might seem at the time. So when I found myself recently at my center's mandatory lung transplant seminar series, I honestly tried hard to listen and catch whatever little life lessons might be gleaned from the day's lecture. After all, I'm nothing at this point if not a dedicated transplant patient. So I listened, and I learned, and I was right there with the speaker until suddenly, out of the blue, she imparted these words of wisdom: "Your lungs may be sick, but you still have your arms, right? So reach out and give someone a hug!"
To be honest, I didn't hear too much after that.
Now before anyone jumps to conclusions, I would like to state for the record that I am in no way anti-hug. I have nothing against hugs as a show of affection, gratitude, or consolation. Truth be told, in fact, I rather enjoy a well-timed hug from someone I like -- it shows me that the person cares, or at the very least that s/he is willing to fake it. And that sort of gesture can go a long way when you're dealing with declining health and a seemingly endless parade of dry runs, trust me.
But still, hugs? Seriously? I just wasn't buying it. Granted I don't have a masters in social work to back me up on this, but the importance of hugs seems like a lesson better suited to a room full of nap-deprived kindergarten children than a room full of oxygen-deprived transplant patients. Not that there weren't other, better points made in the seminar (to be fair, some of the lecture was actually pretty useful), but somehow I found it hard to get past this one piece of lukewarm advice. Because telling a transplant patient that a hug might be the answer seems to me kind of like offering a gunshot victim a band-aid. Sure, it's helpful insofar as it shows that you at least noticed the guy was bleeding, but it also seriously underestimates the scope of the original injury.
Nonetheless, I came home that evening determined to try out my newfound life lesson. Well, okay, not really. I actually came home just as cynical and disbelieving as I was during the lecture. That is, until I saw Sampson sitting on the couch, minding his own business and seemingly attempting to nap in all his cuddly cuteness. And this, I decided, was the perfect time to try out that "hug lesson" that I had so recklessly ignored. After all, my arms weren't sick, right?
As I reached out to wrap my arms around my cuddly little shorkie puppy, I couldn't help but notice how right the speaker's advice had actually been. I hadn't even completed my hug yet, and already I was feeling better, lighter, happier, and...slimier?
Um, yeah, you read that correctly.
Turns out that when shorkies appear to be napping they might actually be chewing a small rawhide bone into a disgusting, mushy mess inside their sneaky little mouths. And when innocent humans reach out to pet or hug these shorkies, they may find themselves suddenly and without warning covered in the gooey remains of said bone, which the shorkie has either offered to them as a gesture of returned affection or (more likely) spit at them in a defensive attempt to avoid the unasked-for hug. Either way, I'd say the moral of the story is probably "never try to test out bad transplant advice on an unsuspecting puppy."
Lesson learned.
Others, well...let's just say that not all lessons are created equal.
I'm not really sure what the value was in learning, for example, that "shoes and pillows will randomly go missing in the hospital." True, this is a fact of life that all chronic patients will eventually have to deal with: stuff does indeed sometimes get lost in the craziness that is a hospital admission. On the other hand, did I really need to sacrifice a perfectly good pair of Pumas and my sister's favorite bed pillow for that lesson? I doubt it.
Still, though, lessons are lessons, and I've been trying to take the good from all of them, no matter how ridiculous they might seem at the time. So when I found myself recently at my center's mandatory lung transplant seminar series, I honestly tried hard to listen and catch whatever little life lessons might be gleaned from the day's lecture. After all, I'm nothing at this point if not a dedicated transplant patient. So I listened, and I learned, and I was right there with the speaker until suddenly, out of the blue, she imparted these words of wisdom: "Your lungs may be sick, but you still have your arms, right? So reach out and give someone a hug!"
To be honest, I didn't hear too much after that.
Now before anyone jumps to conclusions, I would like to state for the record that I am in no way anti-hug. I have nothing against hugs as a show of affection, gratitude, or consolation. Truth be told, in fact, I rather enjoy a well-timed hug from someone I like -- it shows me that the person cares, or at the very least that s/he is willing to fake it. And that sort of gesture can go a long way when you're dealing with declining health and a seemingly endless parade of dry runs, trust me.
But still, hugs? Seriously? I just wasn't buying it. Granted I don't have a masters in social work to back me up on this, but the importance of hugs seems like a lesson better suited to a room full of nap-deprived kindergarten children than a room full of oxygen-deprived transplant patients. Not that there weren't other, better points made in the seminar (to be fair, some of the lecture was actually pretty useful), but somehow I found it hard to get past this one piece of lukewarm advice. Because telling a transplant patient that a hug might be the answer seems to me kind of like offering a gunshot victim a band-aid. Sure, it's helpful insofar as it shows that you at least noticed the guy was bleeding, but it also seriously underestimates the scope of the original injury.
Nonetheless, I came home that evening determined to try out my newfound life lesson. Well, okay, not really. I actually came home just as cynical and disbelieving as I was during the lecture. That is, until I saw Sampson sitting on the couch, minding his own business and seemingly attempting to nap in all his cuddly cuteness. And this, I decided, was the perfect time to try out that "hug lesson" that I had so recklessly ignored. After all, my arms weren't sick, right?
As I reached out to wrap my arms around my cuddly little shorkie puppy, I couldn't help but notice how right the speaker's advice had actually been. I hadn't even completed my hug yet, and already I was feeling better, lighter, happier, and...slimier?
Um, yeah, you read that correctly.
Turns out that when shorkies appear to be napping they might actually be chewing a small rawhide bone into a disgusting, mushy mess inside their sneaky little mouths. And when innocent humans reach out to pet or hug these shorkies, they may find themselves suddenly and without warning covered in the gooey remains of said bone, which the shorkie has either offered to them as a gesture of returned affection or (more likely) spit at them in a defensive attempt to avoid the unasked-for hug. Either way, I'd say the moral of the story is probably "never try to test out bad transplant advice on an unsuspecting puppy."
Lesson learned.
Wednesday, April 21, 2010
(Birthday) Guest Blog: Father Knows Best
Guest Post Stats:
Name: Michael Beatty (aka Piper's dad)
Age: 63 as of TODAY!
Credentials: Lawyer/law professor. Father for 31 years, "CF dad" for 28. Active volunteer and advocate for the Cystic Fibrosis Foundation. Professional frequent flier. Granddad to Sampson the puppy.
Special Talents Include: Holding down the fort in Denver, traveling between Denver and NYC in less than 7 hours for multiple dry runs, trick bike riding.
Hometown: Denver, CO
We All Need Somebody to Lean On
Well, the call finally came. No, no, not that kind of call. After four dry runs, we've come to treat transplant calls with the same kind of excitement normally reserved for telemarketers. I'm talking about the call that my daughter made to ask me to write this post for her blog. Although Kathleen and Erin have both had their star turns, I have thus far been happy with my role catching planes, walking the dog, and providing comic relief with my bicycle crash. (Piper's editorial note: check out this post for the story of my father's bicycle antics.) Nonetheless, I will endeavor to offer my view of the life lessons learned on the transplant floor of Columbia Presbyterian last Friday.
A few days ago, Kathleen called my law office at the beginning of the Friday rush hour to tell me that she and Piper were headed to the hospital (again). My office staff flew into an organized frenzy and got me out the door with a boarding pass, some cash, and one hour to make it to the airport and catch the plane. I made it only because several drivers were nice enough to allow me to cross several lanes of traffic to get to a less congested side street and other people let me cut to the front of the security screening line. I boarded the plane as the door closed and made it not only to NYC, but all the way to the hospital before Piper was even take down to the OR holding room.
As Piper has already explained, the OR holding room is where both the primary and the back-up wait for word on the condition of the lungs. Like "Let's Make a Deal," both families wait together to see what is behind Door Number 1: a double lung for our daughter, a single for another family's loved one, or sometimes just a disappointing judgment call on the part of some very wise doctors. In the best case scenario, one family will win new lungs, while the other will go home without so much as a consolation subscription to Good Housekeeping.
That night was no exception, as we waited for the decision with the back-up, a retired NY policeman, and his sister. And, as we waited, we were privileged to learn his story: how barely a year before he had been diagnosed with pulmonary fibrosis at his retirement physical, and received the shocking prognosis that he would soon need a lung transplant. He had been listed only earlier that week, and now found himself serving as the back-up to my daughter.
Although he probably didn't know that being a back-up to Piper seems like a virtual guarantee that you will get new lungs at this point, he was, quite understandably, a bit nervous. I tried to put myself in his position and am pretty sure I would have preferred facing down Tony Montana and his "little friend" ("Scarface" 1983) rather than sitting on his gurney. Less scary. And, because we had done this all before and he had not, the natural reaction was to start a conversation and try to learn from each other.
From his end came a mixture of genuine concern for "the young woman with the beautiful smile" and the inevitable nervousness of someone about to face a surgery for which he thought he would have more time to prepare. From our end came the joy of having known many amazing transplant survivors mixed with the somewhat jaded consciousness that comes with a few dry runs. Piper, as usual, was gracious, engaging, and reassuring (she's going to hate that I'm writing this!). She assured him that it was probably worth the sacrifice of giving up raw oysters for the chance to breathe; she made him laugh by complimenting his stylish hospital getup; she re-framed a terrifying prospect as an exciting opportunity. And when the decision was made and the judgment came down that neither of them would be getting new lungs, she took heart in his positive attitude and good humor.
So these are my two lessons from the transplant floor: First, God always has a custard pie up His sleeve. You never know when a volcano will erupt, an earthquake will shake your foundation, or you will be told you need new lungs by summer. Life is full of surprises and not all of them are happy ones, so take the time right now to give your life meaning. Second, the best way I know of to find that meaning is to understand that we are all in this together. Whether you let a father cut in line to get to his sick daughter in New York, offer a comforting word to a Clint Eastwood cop in an unfamiliar situation, smile at the doctor who has just delivered you bad news, or simply offer up a silent prayer every time a blog post announces yet another call, you have grabbed a golden ring on the merry-go-round of life.
And when we can no longer challenge our circumstances, at our best we can still challenge ourselves and reach out to others. Because, as the song says, it truly won't be long until we're gonna need someone to do the same for us.
Sunday, April 11, 2010
Song of Myself
Okay, everyone, I'm back.
Seriously, I'm back. As in me, Piper.
Yes, I am aware that I have written a couple of posts in the past week and, no, I am not having an identity crisis (at least, not yet). That was, in fact, me writing -- but I'm not entirely positive how much of it was me. Meaning, I guess, that up until this weekend I've felt just a little bit out of myself and uncertain. I've been going through the motions, almost entirely focused on just recovering and regaining lost ground. I've been stretching my muscles and flexing my wings a little, uncertain of what would still work and what might be broken. And then I found that when I did start moving, I was still there, and it was still me, and eventually I knew that I would find the right moment to leave the ground again -- but it still took one or two hops before that finally happened.
And then, as of yesterday, I suddenly realized that I am back.
I'm back where I want to be physically, which I guess is kind of a bold statement right now considering that where I truly want to be physically is probably an impossibility with these lungs. But just being able to really move, and to walk, and to do gyrotonics again and feel my body opening back up and allowing itself to relax is, I'm not going to lie, almost like a rebirth. And that, in turn, has brought me back into so much better of a place mentally, so that I have been able to actually feel some emotion about what happened last week, rather than just simply bewilderment. The best part of all of this being that, after feeling some of that stuff (both good and bad, simple and hard), and after talking to some of my friends who have been so kind and supportive and entirely willing to admit that they don't understand but also entirely willing to try, I have actually been able to come to one overall conclusion about the events of last Friday night/Saturday morning:
It was absolutely fine.
Or maybe I should be a little more specific there. What happened last week was a very strange occurrence -- one of those weird things that might be listed on the consent sheet as a possibility, but that never really happens to anyone you actually know. Okay, so it happened. It happened and my team did the best they could to take care of me. It happened and, to be honest, the outcome wasn't even that dramatic, despite how it might have felt in the moment. I came right off the vent. I went home a few hours later. I recovered okay, with a few bumps along the way. And, most importantly, I made it back to myself -- fully and completely -- and I'm not angry, not super frightened, not shaken to the core. I was kind of expecting to be at least one of those things, weirdly, but I'm just not. I am, as ever, waiting for a transplant, grateful for the opportunity, happy with my choice of a center, and maybe just a little bit more bruised for the experience.
But then again, bruises heal. (Trust me, my wrist right now is living proof of the truth of that statement.)
I think we're all familiar with the tired old adage: what doesn't kill you makes you stronger. I'm beginning to think that what doesn't kill you, well, doesn't kill you -- and honestly that's enough for me. If there is any great lesson to be learned from this all, maybe it's just that unexpected and even bad things can happen, and when they do, it's not the end of the world. Things will eventually return back to "normal" (even if that normal looks a little different than before) and life will go on.
And eventually, when we're ready, we will all come back to ourselves.
Tuesday, March 30, 2010
This Unfolding
Rain courses down the living room window next to where I sit, typing these words by the grey light of a cloudy city day. I've always loved the rain, for some reason -- never complained about the afternoon thundershowers that so dominated my childhood summers in Colorado, even as the flashing lightening and deep booming echos startled my horses and put my swimming lessons on hold for the hour. And even today, with the mountains replaced by towering buildings and the frightened horses giving way to honking taxi cabs, I still find rain more beautiful than irritating. It's something about the peaceful rhythm of its fall from the heavens, or the eerie magic of a mist-filled skyline that does it to me, I guess. Or maybe it's just the confirmation of yet another cycle: water from the sky to the earth, the changing of the seasons, April (or late March) showers drifting slowly into the promise of May flowers...or so I'm told, anyway. There's just something about rain that makes me want to savor the moment.
Of course, it helps when that moment is warm and dry, filled with a cuddling shorkie after a hot bath and the anticipation of a late-night movie with my sister. It helps when that moment is a brief respite from the constant coughing, and comes in a hour where there are no treatments to be done, no more pills to swallow, no IVs to hook up until later tonight. It doesn't even hurt to have the moment fall in a rare space of "alone time" (sorry, Sampson, present company excluded) -- a place in time when my apartment is once again my own personal domain: my light, my shadows, my windows, my space.
My life.
It's weird for me sometimes to think of this space I'm moving through as a part of my life. There is so much language to the contrary: "my life is on hold," "waiting on the gift of life," "hoping to get my second chance," -- always waiting, hoping, wishing. There is a part of me that prefers to see myself as the person I was before all this started (wait, was there ever a "before" period? Or was it all just one seamless transition?), or the person I will perhaps become after this is all over. A part of me that would like to separate out this period of waiting and constant sickness as some sort of intermission -- a pause in between acts of the real show -- a time to visit the concession stand and stretch your legs until the main actress catches her breath and resumes the stage, her weaker, sicker understudy retired to the wings at last. There is definitely a part of me that would like to scrap this chapter -- just edit it all out until the page is gloriously, perfectly white again, and filled with the promise of any new story.
Yep, there is definitely that part of me.
But, weirdly enough, there is also a growing sense in my mind that this waiting is, in fact, not just a part of my life, but a MAJOR passage in my own personal journey. This is not an intermission, in other words, but perhaps a type of dramatic climax -- the moment when the plot comes together and the heroine finally comes to terms with something deeper than herself. Which sounds, of course, wonderfully dramatic and intriguing, but hardly suffices to tell the story of all the many moments that I have been living lately:
The moment when I was told I needed a transplant and I knew CF had won, in a sense, because it was taking my lungs from me.
The moment when I accepted that I needed a transplant and I knew CF had NOT won, in any sense, because it could never take my spirit from me.
The moment when I was told I could actually have a transplant and I knew gratitude and excitement and fear beyond any of my wildest emotional fantasies.
The moment(s) when I realized that no one has to start dying until they choose to stop living, and that one word doesn't have to define my entire existence, no matter how scary a concept it might represent.
The moment I was offered a chance at new breath from a stranger.
The moment I relinquished my chance at new breath into the chest of another stranger.
The moment I came back home to my shorkie and my family ordered (good) mexican food and my friends came over for an impromptu gathering that evening and I realized that I was okay, I was still breathing, and that I would live to see the next day and (hopefully) the next set of perfect lungs.
The moment I sat with my shorkie and watched the rain course down my living room window as I sat typing out a rambling message of what it's like to live in waiting, instead of waiting to live.
Recently I read a quote from a young psychologist who developed AIDS during the start of the epidemic. After learning his diagnosis, before he even told his friends, he wrote these words (taken from And the Band Played On, by Randy Shilts):
"It's important for me to keep a very close watch on this time. It would be so easy to think I'm not even going through this. It's an interesting time. I would not miss it for the world -- what it's like to go through this unfolding." -- Gary Walsh, 1983
Neither would I.
Of course, it helps when that moment is warm and dry, filled with a cuddling shorkie after a hot bath and the anticipation of a late-night movie with my sister. It helps when that moment is a brief respite from the constant coughing, and comes in a hour where there are no treatments to be done, no more pills to swallow, no IVs to hook up until later tonight. It doesn't even hurt to have the moment fall in a rare space of "alone time" (sorry, Sampson, present company excluded) -- a place in time when my apartment is once again my own personal domain: my light, my shadows, my windows, my space.
My life.
It's weird for me sometimes to think of this space I'm moving through as a part of my life. There is so much language to the contrary: "my life is on hold," "waiting on the gift of life," "hoping to get my second chance," -- always waiting, hoping, wishing. There is a part of me that prefers to see myself as the person I was before all this started (wait, was there ever a "before" period? Or was it all just one seamless transition?), or the person I will perhaps become after this is all over. A part of me that would like to separate out this period of waiting and constant sickness as some sort of intermission -- a pause in between acts of the real show -- a time to visit the concession stand and stretch your legs until the main actress catches her breath and resumes the stage, her weaker, sicker understudy retired to the wings at last. There is definitely a part of me that would like to scrap this chapter -- just edit it all out until the page is gloriously, perfectly white again, and filled with the promise of any new story.
Yep, there is definitely that part of me.
But, weirdly enough, there is also a growing sense in my mind that this waiting is, in fact, not just a part of my life, but a MAJOR passage in my own personal journey. This is not an intermission, in other words, but perhaps a type of dramatic climax -- the moment when the plot comes together and the heroine finally comes to terms with something deeper than herself. Which sounds, of course, wonderfully dramatic and intriguing, but hardly suffices to tell the story of all the many moments that I have been living lately:
The moment when I was told I needed a transplant and I knew CF had won, in a sense, because it was taking my lungs from me.
The moment when I accepted that I needed a transplant and I knew CF had NOT won, in any sense, because it could never take my spirit from me.
The moment when I was told I could actually have a transplant and I knew gratitude and excitement and fear beyond any of my wildest emotional fantasies.
The moment(s) when I realized that no one has to start dying until they choose to stop living, and that one word doesn't have to define my entire existence, no matter how scary a concept it might represent.
The moment I was offered a chance at new breath from a stranger.
The moment I relinquished my chance at new breath into the chest of another stranger.
The moment I came back home to my shorkie and my family ordered (good) mexican food and my friends came over for an impromptu gathering that evening and I realized that I was okay, I was still breathing, and that I would live to see the next day and (hopefully) the next set of perfect lungs.
The moment I sat with my shorkie and watched the rain course down my living room window as I sat typing out a rambling message of what it's like to live in waiting, instead of waiting to live.
Recently I read a quote from a young psychologist who developed AIDS during the start of the epidemic. After learning his diagnosis, before he even told his friends, he wrote these words (taken from And the Band Played On, by Randy Shilts):
"It's important for me to keep a very close watch on this time. It would be so easy to think I'm not even going through this. It's an interesting time. I would not miss it for the world -- what it's like to go through this unfolding." -- Gary Walsh, 1983
Neither would I.
Monday, March 22, 2010
The Hardest Part
Okay, so now that I've had a little time to decompress after yesterday, I've come to a really somewhat startling conclusion:
Yesterday might have been one of the best days of my life.
Um, yeah, you read that right. And no, don't worry, I'm not suffering from post-traumatic stress delusion over here. Believe me, I never expected that I would ever write those words about a day filled with hospitals, blood draws, IVs, super stylish "gowns," and well, frankly, disappointment. I never thought that I would ever call spending 9 hours NPO being prepped for surgery a good time. And, to be honest, it really wasn't a "good time" in the traditional sense of the term, but I have since come to understand that it was a very "good time" in terms of learning a very valuable lesson.
Okay, let me explain.
A couple of my favorite CF transplant bloggers have recently been inspiring me with their words of wisdom about trust and acceptance. I'm always so grateful to read those messages because they remind me that even when things don't turn out as we would like them to, they still turn out as they should. And I guess I should preface all this by saying that I do, in fact, believe in the Greater Plan -- that God has a purpose for us, that we are all connected as part of creation, and that (as Sara so wonderfully reminded me) "the universe is unfolding as it should." But I'm also the first to admit that believing in that concept in the abstract is often a whole lot simpler than believing and actually trusting and rejoicing in that concept on a daily basis, especially when, well...shit happens.
Yesterday, though, the abstract became real for me in a way I don't think I could have ever anticipated, and in retrospect it seems like the best blessing I could have ever asked for.
I felt firsthand how one family's loss can, through their grace and generosity, become a miracle of hope for another family. I sat in a hospital room with my sister as we both shed tears for the family that was offering us a second chance -- that without even knowing us was willing to share the greatest gift we could even imagine -- and doing so unconditionally, without asking anything in return. And honestly, it was pretty indescribable to actually feel that miracle -- to know suddenly (rather than simply to think) that hope and life really can be born out of grief and death.
And then, later, the other side of that coin became equally real to me when I learned that my loss would be another family's joy and rebirth. It was just a flash -- a split second spent on a hospital transport gurney in the dimly lit OR holding area -- but I realized that just as I was so willing to accept that another family's loss for my gain was right, I also needed to trust just as fully in the fact that my loss was, in fact, exactly what should have happened. Which is not to say that it was easy, or that I was particularly thrilled when I got the news or when as I watched another man roll off to the OR where my surgery had been scheduled, but I guess it is to say that I was honestly at peace with it even in that very emotional moment. It wasn't "fun" for sure, but it was okay, and more than that -- it was right.
I really, truly believe that -- now more than ever. Just as I really, truly believe that perfect lungs will come for me, and for Beth and Jess and Jen and Rhi and Gina and Katie and Jerry and James and Andrew. I don't know that, of course, but I do think I know now that it will all be exactly as it should be, either way.
Does all this sound too passive for your taste? I promise I don't mean it to be. One thing I have learned through this entire process is that you have to fight and advocate for yourself, and you have to take active, positive steps toward making good things happen. But when things don't turn out exactly as I planned them, even after all my best efforts, I hope that I can also take from this entire experience the understanding that, well, that's okay too.
Tom Petty, by the way, was wrong: it's not so much the waiting as the trusting that is, in my opinion, the hardest part. And also the most beautiful.
Yesterday might have been one of the best days of my life.
Um, yeah, you read that right. And no, don't worry, I'm not suffering from post-traumatic stress delusion over here. Believe me, I never expected that I would ever write those words about a day filled with hospitals, blood draws, IVs, super stylish "gowns," and well, frankly, disappointment. I never thought that I would ever call spending 9 hours NPO being prepped for surgery a good time. And, to be honest, it really wasn't a "good time" in the traditional sense of the term, but I have since come to understand that it was a very "good time" in terms of learning a very valuable lesson.
Okay, let me explain.
A couple of my favorite CF transplant bloggers have recently been inspiring me with their words of wisdom about trust and acceptance. I'm always so grateful to read those messages because they remind me that even when things don't turn out as we would like them to, they still turn out as they should. And I guess I should preface all this by saying that I do, in fact, believe in the Greater Plan -- that God has a purpose for us, that we are all connected as part of creation, and that (as Sara so wonderfully reminded me) "the universe is unfolding as it should." But I'm also the first to admit that believing in that concept in the abstract is often a whole lot simpler than believing and actually trusting and rejoicing in that concept on a daily basis, especially when, well...shit happens.
Yesterday, though, the abstract became real for me in a way I don't think I could have ever anticipated, and in retrospect it seems like the best blessing I could have ever asked for.
I felt firsthand how one family's loss can, through their grace and generosity, become a miracle of hope for another family. I sat in a hospital room with my sister as we both shed tears for the family that was offering us a second chance -- that without even knowing us was willing to share the greatest gift we could even imagine -- and doing so unconditionally, without asking anything in return. And honestly, it was pretty indescribable to actually feel that miracle -- to know suddenly (rather than simply to think) that hope and life really can be born out of grief and death.
And then, later, the other side of that coin became equally real to me when I learned that my loss would be another family's joy and rebirth. It was just a flash -- a split second spent on a hospital transport gurney in the dimly lit OR holding area -- but I realized that just as I was so willing to accept that another family's loss for my gain was right, I also needed to trust just as fully in the fact that my loss was, in fact, exactly what should have happened. Which is not to say that it was easy, or that I was particularly thrilled when I got the news or when as I watched another man roll off to the OR where my surgery had been scheduled, but I guess it is to say that I was honestly at peace with it even in that very emotional moment. It wasn't "fun" for sure, but it was okay, and more than that -- it was right.
I really, truly believe that -- now more than ever. Just as I really, truly believe that perfect lungs will come for me, and for Beth and Jess and Jen and Rhi and Gina and Katie and Jerry and James and Andrew. I don't know that, of course, but I do think I know now that it will all be exactly as it should be, either way.
Does all this sound too passive for your taste? I promise I don't mean it to be. One thing I have learned through this entire process is that you have to fight and advocate for yourself, and you have to take active, positive steps toward making good things happen. But when things don't turn out exactly as I planned them, even after all my best efforts, I hope that I can also take from this entire experience the understanding that, well, that's okay too.
Tom Petty, by the way, was wrong: it's not so much the waiting as the trusting that is, in my opinion, the hardest part. And also the most beautiful.
Tuesday, March 9, 2010
We Don't Need No Education
So today started out normally enough, I guess. Wake up, do treatments, eat lunch, go to appointment, go from appointment directly to mandatory lung education seminar/support group, learn about immunosuppression and post-transplant infection control...you know, the usual. Certainly there was nothing this morning to suggest that this evening would be one of those "lessons in karma" kind of moments.
Which is, of course, the funny thing about karma, right? It always seems to sneak up on you.
But, I digress. Back to the story, which, as I mentioned above, begins with a fairly routine visit to my favorite hospital for an educational seminar on post-transplant living -- in this case, immunosuppression drugs. And, just to set the scene, this is the kind of seminar where CFers, COPDers, and all sorts of other lucky lungers young and old come together to learn useful facts like "DO NOT USE A LEAF BLOWER AFTER TRANSPLANT!!!" Which, to be honest, is probably not so useful for those of us living in Manhattan apartments (seeing as I have yet to encounter leaf debris in my 18th-floor hallway) but the point is: it's helpful to some people. As a CFer, though, I sometimes find that these talks are geared ever-so-slightly more towards the "rookies" of the lung-health world, and so I tend to zone out just a bit when the doctors start talking about the need to get rid of pet birds, or the emotional stress of taking tons of pills every day, or...and this is just a random example here...the many, many, many unpleasant side effects of prednisone.
Because I know everything about steroids, right?
At this point I'd like to pause and say that if you're a CFer and are unfamiliar with prednisone, congratulations. You're extremely lucky, and I'm completely jealous. In fact, I'm insanely jealous, but the insanity part is probably due to the fact that I am, in fact, on prednisone. I'm actually on prednisone all the time, but sometimes at higher doses than others -- and right now is one of those high-dose times. In other words, I'm a little bit cranky, a little bit unable to sleep, a little bit of an emotional nutjob, and a whole lot of hungry. And this last one is, of course, a good thing for a CFer, except for the fact that prednisone also tends to mess with blood sugars...which is what brings us to the next part of today's lesson.
Anyway, my mother and I sat through the very well-done and informative presentation, we listened and asked our questions, and then we started to go home. And as we walked out of the hospital, I turned to her and said what will now be known as (in)famous last words on the subject of steroids and side effects: "well, at least we know by now that prednisone never messes with MY blood sugars." And we smiled.
And literally 5 minutes later, my phone rang.
Um, yeah, I don't think I even have to finish this story. Suffice it to say that I actually laughed out loud when I was told that my blood sugar was too high -- not because it was funny, but just because it was so, um, shall we say predictable in its irony? And sure, I'll admit that laughter isn't really a normal reaction to this sort of news, but cut me some slack. After all, I am on prednisone.
Luckily it's not SUPER high, and the most likely fix is just to taper down on the drug as soon as possible, which we were probably going to do anyway, but it is a good lesson in not counting your side effects before they hatch. Not to mention a helpful reminder that no matter how much you know about CF, transplant, and life in general, you're never done learning.
And I'm pretty sure that's a good thing.
Which is, of course, the funny thing about karma, right? It always seems to sneak up on you.
But, I digress. Back to the story, which, as I mentioned above, begins with a fairly routine visit to my favorite hospital for an educational seminar on post-transplant living -- in this case, immunosuppression drugs. And, just to set the scene, this is the kind of seminar where CFers, COPDers, and all sorts of other lucky lungers young and old come together to learn useful facts like "DO NOT USE A LEAF BLOWER AFTER TRANSPLANT!!!" Which, to be honest, is probably not so useful for those of us living in Manhattan apartments (seeing as I have yet to encounter leaf debris in my 18th-floor hallway) but the point is: it's helpful to some people. As a CFer, though, I sometimes find that these talks are geared ever-so-slightly more towards the "rookies" of the lung-health world, and so I tend to zone out just a bit when the doctors start talking about the need to get rid of pet birds, or the emotional stress of taking tons of pills every day, or...and this is just a random example here...the many, many, many unpleasant side effects of prednisone.
Because I know everything about steroids, right?
At this point I'd like to pause and say that if you're a CFer and are unfamiliar with prednisone, congratulations. You're extremely lucky, and I'm completely jealous. In fact, I'm insanely jealous, but the insanity part is probably due to the fact that I am, in fact, on prednisone. I'm actually on prednisone all the time, but sometimes at higher doses than others -- and right now is one of those high-dose times. In other words, I'm a little bit cranky, a little bit unable to sleep, a little bit of an emotional nutjob, and a whole lot of hungry. And this last one is, of course, a good thing for a CFer, except for the fact that prednisone also tends to mess with blood sugars...which is what brings us to the next part of today's lesson.
Anyway, my mother and I sat through the very well-done and informative presentation, we listened and asked our questions, and then we started to go home. And as we walked out of the hospital, I turned to her and said what will now be known as (in)famous last words on the subject of steroids and side effects: "well, at least we know by now that prednisone never messes with MY blood sugars." And we smiled.
And literally 5 minutes later, my phone rang.
Um, yeah, I don't think I even have to finish this story. Suffice it to say that I actually laughed out loud when I was told that my blood sugar was too high -- not because it was funny, but just because it was so, um, shall we say predictable in its irony? And sure, I'll admit that laughter isn't really a normal reaction to this sort of news, but cut me some slack. After all, I am on prednisone.
Luckily it's not SUPER high, and the most likely fix is just to taper down on the drug as soon as possible, which we were probably going to do anyway, but it is a good lesson in not counting your side effects before they hatch. Not to mention a helpful reminder that no matter how much you know about CF, transplant, and life in general, you're never done learning.
And I'm pretty sure that's a good thing.
Subscribe to:
Posts (Atom)
