Friday, May 28, 2010

T-Shirt Update

Hello to all my fellow and beloved breathheads (ps: loving the new nickname)!

So here's a quick update on the shirt situation:

*Today (Friday the 28th) is the official deadline. I will be placing the order at 4:00 pm EST, so please have your order in by then. I will probably be getting a limited number of extra shirts, but those will only be available on a first-come/first-served basis.

*Youth sizes update: they will be available! However, the youth sizes will be simply xs/s/m/l (no special toddler sizes available, sorry!). If you have a little one and asked about a shirt for him/her, you'll be receiving an email from me confirming that you still want one and the right size for your child.

*I will send a confirmation to each of you with your order "invoice" (i.e., number of shirts and size breakdown). If there is a problem, or if you don't receive your confirmation by noon Friday, please contact me!

*Once you have received your confirmation, then feel free to donate toward the cost of the printing/shipping either by paypal (email: or by snail mail. I'll send a mailing address to those who requested it along with the confirmation. Remember, no official cost for t-shirts, and donation is NOT required for your shirt.

On a personal note, I have been incredibly touched (and my sister is flattered) by the response to the t-shirts. Thank you all for your support, your readership, and your general awesomeness. I hope you enjoy the shirts and wear them with pride -- these lungs are for all of you!

xoxo beautiful people,

Wednesday, May 26, 2010

The Truth about Waiting

(Or; Why I'm Not in the Fortune-Telling Business)

First off: okay, um, wow? Can I just say that the response for t-shirts has been AMAZING? Who knew so many people were in the market for a new set of lungs (or, you know, a picture of them at least)? Anyway, here's the deal:

*The shirts are officially no cost. I know we all have enough to deal with in terms of payments and financial worries, and I don't want anyone to miss out on the opportunity to give my blog free publicity -- er, I mean to own a beautiful and timeless piece of fashion history -- because of cost. So no charge for shirts.
*If, however, you would like to make a donation toward the cost of printing and shipping, I would be thrilled to accept it. I'm working on setting up a paypal account for that purpose, or simply e-mail me and I'll send my address along for cash/check donations. Just as an FYI, the cost is about $10/shirt, so please limit your donation to that.
*Some people have asked about toddler/child sized t-shirts. As of right now I have two people interested in receiving shirts for their little guys. I'm working on finding a provider willing to print youth sizes with no minimum order, so if you're interested in showing off your kiddo in style, please let me know.
*OFFICIAL DEADLINE for shirt orders is Friday, May 28th (good catch, Jenny!). Sorry about the short notice, but I want to get these printed and sent out ASAP.

Okay, so we're cool on the shirts.

It's been about a month since my last official call, and I'm definitely starting to get restless. Don't get me wrong, there's a part of me that's grateful for the extra time to get everything in order, but you can only repack your hospital bag a certain number of times before you start just wanting to get it over with, already. It's crazy to think that headed into April (with two dry runs from March already behind me), I was absolutely certain that I would have new lungs within the month. Well, okay, so that's not entirely true -- I haven't gotten so cocky yet that I believe I can predict the future, but I was pretty sure the "real" call was coming soon. And now to suddenly find myself at the end of May and still with my CF lungs, well, let's just say I won't be setting up shop as a fortune teller anytime soon. It's humbling, when you think about it, to realize just how uncertain this whole process is. One month you're getting 1-2 calls every week, and then a whole month passes with no lungs available for you. Frustrating, for sure, and also a reminder of why it helps to be on the healthier side of the "transplant window" going into the waiting experience. Lungs don't always come when you expect them, or when you want them . . . there's more to all of this than I will ever understand, but I know I'm grateful to have time to wait, for now at least.

Anyway, after weeks of trying to stay relatively close to home and obsessively checking my phone every five seconds in case I somehow missed a call, I finally woke up and decided that's not the way this relationship is going to go down. After 4 canceled dates and now no calls for several weeks, I'm pretty sure I could do better. No, I'm not switching centers, if that's what you're thinking. I'm still happy overall with my choice and love my doctors, so that's not in the cards anytime soon. Instead, I've decided (again) that it's up to me to actually live my life as best I can during this period, despite the uncertainty of it all. I say "again" because you may remember that I already had this brilliant revelation months ago, but it's all too easy to forget your vow to keep living when the call seems imminent.

So yeah, all of this is a long way of saying that I'm now daring lungs to come and ruin my plans. I've been planning meals out with friends, trips to the Cirque du Soleil, parties at my apartment, and even a couple of day trips. On Monday my mom and I took the train out to New Haven, CT to see my wonderful friend graduate with his (second) master's degree from Yale, and then yesterday we rented a car to travel out to Woodbury Commons -- a truly amazing upscale designer outlet center -- for some shopping and a little fun outside the City. True, we brought enough O2 with us to cover if we got the call along the way, and we're still staying within a couple of hours of my center, but it's still nice to be able to actually make plans and follow through with them.

I think it all goes back to the concept of "readjustment" that I wrote about a few posts ago. For me, at least, there was this huge adjustment when I finally accepted that transplant was on the horizon for me, and then again when I actually went on the list and realized that lungs could technically come for me any day. As my father put it "we went from desperately hoping for a cure to desperately hoping for a fresh set of disease-free lungs" within the span of a couple of years (although obviously we're still hoping for a cure -- we will beat this monster even though to do so wouldn't "save" my lungs at this point). Talk about a major shift in expectations. But I still don't think it compared to the adjustment that took place after my first dry run, when we all suddenly woke up to the hard reality that this could, in fact, happen at any moment, and whether we were prepared or not wasn't going to make any difference to the lungs when they finally arrived. So we went into intense transplant mode, which continued hardcore until the "damp run," at which point we kind of shrugged our shoulders and decided that we had, in fact, seen it all and were literally as prepared as any family could possibly be. So we waited, and waited, and then the adjustments began again as it began to dawn on us all that 4 dry runs does not a transplant make. In other words, each day is a new day, with as much or as little of a chance of a matching donor as the day before it, and expectations don't mean much when the whole thing is out of your hands.

And so I decided to readjust one more time: back to life, back to being grateful for every new day with the lungs God gave me, and back to focusing my energy on the things I can control, rather than spending all my time thinking about something that is going to come when it comes regardless of what I think about it. I figure if time flies when you're having fun, the least I can do is try to speed up this waiting a little bit.

And, in the meantime, if any lungs want to come along and crash my party, that's just fine by me.

Sunday, May 23, 2010


Today was our Great Strides walk in lower Manhattan. I was SUPER proud of my team -- we raised about $12,500 (preliminary total) for a cure! That's money that will go straight to the Cystic Fibrosis Foundation, and about 90 cents of every dollar donated directly funds CF research and educational programs. And when you think about the new drugs in the pipeline and how freakin' close we are to FINALLY breaking through to target the actual defect that causes this disease, well, all I can say is wow -- Great Strides, indeed.

Thank you to all my wonderful walkers for showing up, for smiling even at 9:30 am on a Sunday morning, and for looking so amazingly HOT in my team t-shirts! I was especially proud of our two furry mascots, particularly "Tug" for rockin' the shirt like a champ. Also thanks to my CF friends Graves, Joni, and Gabby -- awesome to see you all!

And a VERY special thank you to everyone who donated to our team through this blog. You guys have no idea how amazing the response was after my post for a cure! I was truly overwhelmed with gratitude and excitement. Not that I ever for a second doubted that I had the best readers a girl could ask for, of course, but you didn't have to go to such amazing lengths to prove it! Please know that you not only made my day, you also made a HUGE difference in the lives of everyone living and breathing with CF throughout the world.

Here are a couple of pictures from the big day:

Team Piper Official Portrait

T-Shirt Front

T-Shirt Back

My Lovely Sister (and designer of the shirts!), My Father, and Me at the Walk

Okay, here's the fun part:

Are you an official "Breathhead"? Are you interested in having one of these fabulous lung t-shirts -- designed by a famous designer featured in the June issue of Vogue, no less -- for your very own? Would you like to spend the night of my transplant cruising my blog, reading updates from my talented sister, and sporting your own piece of beautiful Matter of Life and Breath apparel?

If you answered yes to any of the above questions, consider contacting a therapist for special help. Just kidding, contact me instead! That's right, we're thinking of ordering another batch of these beautiful shirts for all my wonderful supporters, and would like nothing more than to send YOU your very own. So let me know at matteroflifeandbreath(at)gmail(dot)com and please include info as to your preferred size and shipping address. All addresses will be deleted upon shipping.

Thanks guys, and thank you to everyone who donated, walked, or volunteered for the many Great Strides walks all over the country. You guys are, as ever, an inspiration.

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.

Wednesday, May 19, 2010

Lessons from the Westside Highway

I had an epiphany today.

Like many great moments in history, this one happened in the backseat of a Manhattan taxi cab. (As a sidenote, I'm convinced that cabs breed brilliance b/c of the "near death experience" nature of most intercity cab rides.) So anyway, I was sitting there -- hoping to avoid a collision and thankful that, just in case, I had already registered to become and organ and tissue donor -- and I had my epiphany. Because suddenly, in the midst of all the honking and the lane changing and the jaywalking pedestrians, I had this single, crystal clear thought:

Life would be so much easier if I could just stay seated all the time.

Seriously, that's what I thought. And no, don't worry, that wasn't the brilliant epiphany. Because immediately after having that one, singular thought, I started to remember how absurd, wrong, and well, just "un-Piperlike" that thought really was.

I grew up in Colorado. I spent my childhood hiking, biking, and skiing, when I wasn't busy swimming, riding my horse, and "galloping" around my backyard over hurdles in make-believe horse shows with my friends. Later on, in college, I volunteered my time at a day shelter for homeless youth, at which my primary job was to chase five year old children around and around the center's playground. In short, while I may never have been a super athlete, I have always been extremely active. And I certainly never in my life thought it would be "fun" to sit still.

For me, the hardest part of this whole process has been the feeling that I am slowly but surely "losing" parts of myself and my personality, if only temporarily. I no longer have the physical energy to do many of the things I love to do -- even small, silly stuff like dancing around my apartment or chasing the puppy. And I no longer have the mental energy to commit to certain other activities -- long conversations are sometimes tiring, and I find myself less likely to expend effort on being funny or outgoing. It's not like I'm not me anymore -- I definitely am. But I sometimes feel like a painting that's been left out in the sun too long. The picture's still there, with the artist's unique flair, but the colors are maybe just a little bit muted.

But, I promised you guys and epiphany, so here it is:

No matter how much CF takes from me right now, I will never allow it to cause me to lose sight of myself.

Okay, fine, I know that sounds a little bit cheesy, but you'd be surprised at how hard it is sometimes to say to yourself "okay, today I might only have the energy for the necessary things -- the treatments and the exercises and the appointments and the breathing -- but tonight I will make some time, even just a minute, to remember what it was like before those daily tasks took up all I had for the day, and to dream about plan the time when they won't again." It's not easy. In fact, sometimes it's painful to acknowledge that things are changing at all, but my revelation today was that in the acknowledgment -- in the understanding that while certain parts of me will always be present, others have necessarily taken a backseat lately to the simple task of staying alive and breathing -- there also comes a realization that this is not the only way for things to be. I don't have to accept these changes as permanent or even as a guaranteed part of my life right now. I can acknowledge them and then consciously choose when it's worth getting out of breath to do that silly nighttime rompus with Sampson. I can give myself the okay to focus my energy on the important stuff while still remembering that inside it all is a funny girl with a sarcastic sense of humor. I can give myself the freedom to take care of myself now, while still reserving just a little bit of precious energy to fight for the woman I was, am, and will be again.

And that, my friends, was an epiphany worthy of even the most terrifying taxi ride.

Monday, May 17, 2010

An Open Letter in Support of a Cure

Dear Would-Be Donors, Volunteers, New Friends, and Supporters:

I am writing you today to let you know about an issue that is very close to my heart. In fact, it's directly over, next to, and surrounding my heart: in my lungs. And it's also in the lungs of many of my friends, in the lungs of young children, in the lungs of approx. 30,000 people in the United States alone. That's right, today I am writing you to let you know about cystic fibrosis (CF), a deadly disease that I and many other amazing, wonderful, and inspiring people live with everyday. It's a disease that directly affects the daily lives of so many, and I write on behalf of every single one of those remarkable individuals to ask for your help.

We need a cure.

When you have a genetic disease, science means everything. The Cystic Fibrosis Foundation (CFF) partners with drug companies and other groups to fund research that has led to major developments in the treatment of CF. In fact, since I was born in 1981 the median life expectancy for a person with CF has risen from only to 18 to slightly over 37 years. Much of this is due to the new drugs that have reached the market during that time period, none of which would have been developed without the generous support of donors. To say this is amazing progress for a genetic disease is a huge understatement -- especially when you consider that alongside the increase in life expectancy has also come a dramatic shift in the quality of life for most people with CF. There are now adult CFers holding down jobs, raising families, and giving back in the same way that so many have given to us through the years. And we are, all of us, so grateful for that opportunity.

But let me tell you why it's not enough. The simple fact is that while there have been amazing improvements in CF care since the early 80s, the focus of that care is still on treating the symptoms of the disease, rather than the underlying defect. We have drugs that help thin and hydrate the sticky, dry mucus that collects and pools in our lungs; drugs that help us compensate for our ineffective pancreases by feeding our bodies synthetic enzymes to digest food; we have drugs that reduce inflammation in the airways and allow us to take deeper, fuller breaths; and we have drugs that attack the many different strains of bacteria that inevitably find their way into our diseased lungs, causing recurrent infections that in turn lead to irreversible scarring; and, for a lucky few, we have the final option of transplant -- trading in our CF lungs for the lungs of a generous stranger in the hopes of increasing the time we have to savor this life.

Unfortunately, few of these amazing, life-enhancing drugs come without consequence. Overuse of steroids to treat inflammation can lead to osteoporosis, diabetes, and adrenal disease. Pancreatic enzymes can cause scarring to the digestive track and lead to further issues down the road. Antibiotics used to treat infections often become ineffective over the years, forcing the doctors to resort to increasingly strong drugs that can themselves cause kidney failure, hearing loss, joint pain, nausea, or allergic reactions. Eventually, the infections often progress to the point where antibiotic treatment is no longer enough, and transplant becomes the only option. While this is a remarkable second chance for many CFers, it comes with a lifetime guarantee of immuno-suppression as well as many common secondary conditions such as high blood pressure, diabetes, osteoporosis, and an increased risk of certain cancers.

But you may have heard something about CF in the news lately -- say in a recent article published in The New Yorker. And if you did, you might have learned that the CFF is now helping to fund clinical trials for several drugs aimed at treating the actual genetic defect that causes cystic fibrosis. These drugs have the potential to change the entire approach to CF treatment, allowing perhaps for less use of the symptom-treating drugs that often lead to other, secondary ailments, and focusing instead on eliminating those issues at their source. These drugs have shown amazing promise in clinical trials so far and are currently in the late stages of testing before the final push to market.

And that, my friends, is where you come in.

It costs close to $800 million to bring a single drug to market, from research and development through testing and FDA approval. Because of this, it is ONLY through the support of people like yourselves that any of these drugs ever reaches the CF patient population. We are so close to potentially saving thousands of lives with these new therapies, but we simply cannot do it without your help. And, despite the seemingly astronomical sum required to make a difference, let me assure you that it's the little donations that add up to the bulk of this life-changing number. That change you found in your pocket when you were getting ready to do the laundry, the amount you would spend on your daily Starbucks latte, the cost of a night at the movies (or even the popcorn!) can be a miracle for all the many people whose every breath still depends on a cure.

May is National Cystic Fibrosis month and, across the country, people will be walking to support the CFF. Please add your name to the ever-growing list of amazing people behind this cause, whether it be through a gift of your time, your money, or even just a pledge to pass on the message of this disease to ten new people.

You can donate to my own walk by clicking this link and following the simple instructions.

30,000 people (and their 60,000 lungs) will thank you for it!

xoxox beautiful people,

Sunday, May 16, 2010

Tune-Ups, Adjustments, and Other Technicalities

Okay, since I'm pretty sure my post of a few days ago constitutes a renewal of my vows to my blog, I guess it's time to do my part and start sharing. And, just so everyone know up front, this isn't going to be the most of uplifting of posts. Nor is it going to be an angry rant. It's not going to be a litany of complaints (I ended my pity party last week -- sorry for those who never scored an invite) and it's not going to be a philosophical exploration of my latest illness-induced existential crisis. It's not even going to be very funny (gasp!), which for the 10% of people out there who actually think I'm funny most . . . um, well, make that some . . . okay fine, any of the time, might be a major disappointment.

This post is just going to be about my life. It's going to be about my CF. It's really just going to be, plain and simple.

The fact of the matter is that things are kind of feeling off lately. By which I mean . . . well, I guess it's kind of hard to explain what I mean. I think I mean that I've been sick, which in turn has led to more antibiotics and less energy, and also an increase in some of my other drugs that have, shall we say, less than awesome side effects. And as a consequence of this infection-ridden and drug-overloaded state, my body feels kind of, um, well I guess weird would be a good word to describe it. I feel exhausted a lot of the time, and I don't mean just the sleepy kind of exhaustion (although that's definitely part of it). It's kind of like my limbs are just heavier, and one activity is usually enough to make me want to lay low for the rest of the day. I have some other symptoms -- like the fact that I'm still coughing, have a high HR, and ran a low grade fever for part of the day today -- but generally speaking I don't feel bad, per se. I just don't feel quite right, either. I'm not sure what it means, but it's definitely affecting my ability to stay upbeat and push my way through this most recent bout of infection. Whether it's the lung stuff or the drug stuff or some other sort of stuff remains to be discovered (and, as we all know with CF, it might never be fully explained), but I'm hoping things are going to even out here over the next week.

And, of course, I'm well into week 3 now on IVs. This is the 5th course of 2010 already. Suffice it to say, I'm over the IVs. There's a reason they're called "tune-ups" -- you're just not supposed to need them this often. Period.

Uncool, CF. Really uncool.

The other side of the coin is the emotional stuff, and dealing with the fact that I seem to have hit a little bit of a transplant road block. Throughout the end of March and all of April I was getting calls pretty constantly (sometimes up to two a week), but lately I haven't been receiving, well, any calls at all. I know of course that transplants ebb and flow and that there can't be a suitable donor for me every week -- I'm certainly not blaming anyone or complaining about my center -- but it's still frustrating to go through that many dry runs and then hear nothing for such a long stretch. And it's also hard because my mother and I started living a little differently when we were getting all those calls. How could we not, after all? We started staying a little closer to home, planning our days a little differently, and even -- in a veritable fit of optimism -- making some plans for the future. Crazy dreamers that we are, we could actually imagine a time when the phone might not govern our lives, and distance from the transplant center might not be our number one criteria when planning a weekend. Meanwhile my sister has been putting off things like necessary business trips because she certainly doesn't want to be in Africa while her little sis is getting new lungs. In other words, going from thinking transplant was "so close we could taste it" (or, in some cases, so close we had actually said our "see you laters" and were in our respective OR/waiting room positions) to thinking once again that it "could be 2 days, could be 2 weeks, could be 2 months" is really a huge adjustment. Not one we can't handle, of course, but it's been kind of tough at times, not gonna lie.

Of course, there's a lot of good stuff happening right now as well. "Team Piper" (yep, I'm just that creative) is going to walk for the Cystic Fibrosis Foundation this next Sunday and has already raised over $4,000 for a cure. I am super blessed to have a ton of friends and family coming to walk with me -- my Godmother is even flying out from CO! My daddy came into town this weekend and he, my mom, and I walked from TriBeCa to upper SoHo today (call it practice for next weekend) where I promptly bought myself a very cool new present. And I've decided that as long as I'm not getting a call, I should get busy doing other things, so I've planned a couple of cool NY outings for next week and am hoping to start completing some projects I've had floating around in my head for a while now. To top it all off my dog walker is currently vacationing in Europe (NYC dog walking is clearly a lucrative professional choice), which means that I foresee a lot of outdoor bonding for the shorkie and me over the next week. Not a bad thing, for sure.

See, told you it wouldn't be totally depressing, right?

So there you have it: the physical, the mental, and the, um, other stuff. I think the long and the short of it is that I'm still waiting, and any transplant patient (or hardcore fan of 80s rock) will tell you that the waiting is the hardest part. I'm pretty sure I'm holding my own with it (most of the time), but that doesn't make it easy, and it doesn't make it all that fun. Luckily I'm also pretty sure that last one is something I can change with a little effort -- and maybe another step down on my Prednisone taper.

And here's to trying, beautiful people.

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.

Wednesday, May 12, 2010

It's My Party

So have you ever backed yourself into one of those corners where you haven't done something in a while and then you want to get back to it but you want to make a return worthy of such a long absence and then you can't quite get inspired to really do something special so you just put if off even longer and longer and longer, thus perpetuating the whole cycle?

Um, yeah, me neither. Obviously.

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

I spared you the "little dry run that wasn't #1" where I never left my apartment because the lungs turned out to be high-risk and I am (thankfully) not yet at that point.

And then I spared you the "little dry run that wasn't #2" where I again never left my apartment because my body decided that it would be more fun to spike fevers and play jokes like a resting heartrate of 145+ instead of going into the hospital for yet another try at a transplant.

And then I spared you the inevitable starting of IVs that came after #2, because clearly if you're so sick they're refusing to give you new lungs it's time to call in the big guns.

And then, fast forward nearly a month, and I suddenly realized that I had pretty much spared you guys right out of my life.

Because truth be told life does go on, even when CF rears its ugly head. Since April 23rd I've not only had a few missed dry runs (none of the lungs were ever used, by the way, as if that's supposed to make it any better) -- I've also had a lot of other, non-sickness stuff happen too. I've had my wonderful father come back out from Denver, I've taken my fantastic mom to mother's day brunch, and I've even been able to enjoy some of the surprisingly non-gross weather we've been having in NYC lately (today, obviously, being the major exception -- it is truly gross out there).

So are you ready to thank me yet? Yeah, I didn't really think so.

I guess the simple fact is that if anyone can handle all my CF ups and downs, it's probably you guys, because by and large you've all been there too. And that, of course, is what makes the CF community so invaluable -- like any strong relationship, we're here for each other for better or for worse, in sickness and in health (and then, more often than not, in sickness yet again). We listen to the whining, empathize with the ranting, and even muddle our way through all the Prednisone madness, all while somehow managing to be grateful for the moments of pure, well, life that show up in the middle of all that other stuff. I'm just sorry that it took me about 20 days to remember how special that is.

So this may not be the monumental, witty, and healthy return I originally envisioned, but at least it is a return. And sure, I may still be on IVs -- and I may even have added a new med to the mix just this afternoon -- but I'm still here, still waiting, still breathing, and sometimes, even despite it all, still blogging.

And between all of that, I'd say this pity party is officially over.