Sunday, December 26, 2010

40 years

On December 26, 1970, my parents, Kathleen Murphy and Michael L. Beatty, walked down the aisle to take their place at the altar and say their vows. It was the day after Christmas, they were in Abilene, Texas (where my mother had lived all her life and my father's family had lived intermittently throughout the years), and the day was so busy that neither one of them managed to eat anything at the reception. Fortunately for them, a thoughtful caterer had the foresight to pack them a double-portion boxed lunch of fried chicken to eat on the way to their honeymoon in San Antonio. Unfortunately for my dad, however, my mother ate the entire thing -- double portion and all -- while he drove.

And that little story, y'all, is what we down in Texas like to call "foreshadowing." The lesson being, of course, that while marriage might be a pretty fun road, at the end of the day there's always gonna have to be a few compromises if you want to survive the drive.

And survive they have, despite what some might call a pretty bumpy road. After 2 years of marriage my mom moved to Texas to accommodate his work, which was followed 2 years later by his moving to Idaho to accommodate her PhD. At 9 years of marriage, while they were temporarily working in different universities in separate states, my mother gave birth to their first child (and my older sister) and my dad's epic journey to try and make it from Wyoming in time for the birth has become the stuff of family legend. At 11 years of marriage they gave birth to their second child (yours truly, of course) and were told to "just take her home and love her as long as they had her" due to a fatal disease called cystic fibrosis.

At about 15 years of marriage they moved again, this time back to Houston for my dad's job, and 6 months later my mom moved back with just the two kids in an effort to stabilize my health. Thus began somewhere close to 9 years of commuting -- sometimes between CO and TX, sometimes further (like to MA while my mom received her third advanced degree) -- for my father, who nonetheless managed to be present for nearly every soccer game, horse show, or badly costumed school play. (Major kudos to BOTH of them for pulling that one off, by the way.) The separation ended at about 23 years, when my dad finally returned full-time to Colorado. Shortly thereafter, both my parents moved their jobs (but not their family) to a larger city in Colorado. Around 27 years they sent their oldest daughter off to college, and my dad began a family tradition by driving her cross-country himself, with pit stops at the Grand Canyon and Vegas on their way to Los Angeles. My own trip, 3 years later, would include stops all along the Deep South, including Abilene (the origin of this story), Shreveport, Jackson, and Birmingham en route to Atlanta. My mother flew out to meet the weary travelers at our final destination and help move into college, and both times my dad snapped a picture of the departing daughter walking away from the rental car on her way into the dorm solo, turning back for one last wave and a smile before beginning college.

If parting is sweet sorrow, then my parents have certainly worn that emotion into the ground. At 38 1/2 years my mom left again -- this time to stay in New York with me while I awaited lung transplant. At 39 1/2 years, my parents received the gift of knowing that the dire predictions of my original doctor were wrong, and this gift came in the form of the ultimate gift from some other family -- another set of parents, another spouse of another loved one. And at 39 3/4 years, my mother returned back to CO to complete that cycle -- though it was and is hardly the completion of their collective journey.

And now, at 40 years, they have been Texans, Idahoans, Wyomingites, Coloradans, Massachusonians, and New Yorkers; between them they have no less than 4 post-graduate degrees and have been lawyers, small business owners, researchers, politicians, professors, authors, deans, and honorary nurses; they have traveled to 6 continents and spent at least some time in pretty much any place you can think of; they have friends all over the world; they are loved and admired by many (myself included); they are two of the smartest and kindest people I know, by far; and they are still the parents of two living children and two very sweet dogs (and the "grandparents" to one pretty roly-poly shorkie).

Congratulations, Mom and Dad. Erin and I love you and can't wait for the four of us to celebrate 50 years together.

Saturday, December 25, 2010

Christmas v. The Beatty Family: A Case of Sleds, "Star Search", and Serious Overcrowding

Opening Statement

Good morning, everyone. So glad you could make it out on this chilly December 25th, 2010.

Christmas is that magical time of year when anything and everything seems possible. Everywhere you look people are talking about compassion, love, and spreading what they call "The Christmas Spirit" (which is, I have learned through the years, really just code for "The Way We Should Live Every Single Day of Our Lives", but I digress). Anyway, people are smiling, hot cocoa and candy are available in abundance, and for once in their lives even NYers seem to feel that it's alright to wear a monochromatic suit and a red stocking cap with a little pom-pom stuck on top. Meanwhile I saw not a single PETA volunteer on the street in protest of the obvious cruelty inherent in forcing artic deer to pull a fat guy in a flying sleigh into some seriously tropical climates. And that, ladies and gentlemen, is truly a Christmas miracle.

But even with all that aside, there's another reason why I really do adore this particular holiday. That reason, of course, is simple. Because for an inventive little kid with an overactive imagination and a knack for making up stories (even if said stories never make it beyond her own head, as is often the case), Christmas is, to put it mildly, A.Gold.Mine. No joke.

Or maybe it's just in MY family that Christmas is not only the most wonderful, but also the most comical, time of the year. Seriously, if something weird is going to happen (and trust me on this one, with my family something weird IS ALWAYS going to happen) there's at least a 75% chance that it will happen on or around Christmas Day. Coincidence? Maybe. Bad luck? Nope, I don't think so. Personally, I'm going to go with the theory that God finds us amusing, and therefore we're just a really great birthday present for his Son. You know, just a thought.

Anyway, I can tell you're not fully convinced, which means that I'm going to have to give you hard evidence to make my case. So sit back and enjoy, ladies and gentlemen of the Christmas jury, and please remember that the eggnog in the jury room is most likely spiked due to counsel's slightly wicked sense of humor. Enjoy.

Exhibit A -- The Runaway Sled:

One of the first Christmases I remember fully was in Colorado. At the time, we were what you might call "between houses" (we had just moved back to the state from TX) and I was probably about 4 or 5. Which, of course, made my sister slightly older -- she was somewhere either 6 about to turn 7, or 7, about to turn 8. But age aside, Christmas that year was AWESOME! Santa brought us both matching red sleds (a big deal in snowy Colorado) and we were super excited to try them out. Unfortunately, there were no hills in the vicinity, but no matter -- we lived on a mountain! And our driveway sloped straight down at basically a 90 degree angle! What luck! No need to ask permission, right? Mom and dad won't mind!

What follows is a pretty predictable story: girl meets sled, sled meets driveway, driveway meets truck. Ow. Note that my older sister was NOT on the sled at the critical moment for reasons that remain a point of contention (I think she sent me down as a guinea pig, she thinks I insisted on going first -- both are equally possible). Needless to say my mother wasn't too worried about the blame-game when a man approached her front door with me sobbing in his arms and uttered the phrase "I didn't mean to run over your daughter." Cue the ER, which I promptly decided was a great place to stop crying, stand up, and practice my "jazzercize" moves. Mom claims this was embarrassing. I think the only embarrassing part of the story is that any of us were into "Jazzercize." Ever. Hello, 1980s!

Exhibit B -- The Clumsy Reindeer:

And if, after that harrowing tale of driveways and jazz hands, you still require further evidence, please direct your attention to our next true story of Christmas Past. This one comes slightly later in the chronology, my guess is that I was around 7-8 at the time and my sister closer to 9-10. But even if I don't remember the exact year, I DO remember quite vividly the gift that my sister wanted.

See, my fashion-designer-in-the-making sister didn't want a sewing machine or a box of colored pencils. Nope, she wanted an official "Star Search" karaoke microphone with real voice enhancement and colored lights. Shrinking violet, she is not. Not to mention that this was the late 80s/early 90s, when everyone even semi-cool was perming their hair and lip syncing along with Milli-Vanilli. So of course, Santa wanted her to get this coveted mic (lucky us, right?) and he tried valiantly to deliver it on Christmas morning.

Okay, big guy. Let's just say that you get an "A" for effort on that one and pretty much a D- on actual performance -- though that last grade might be a little generous.

Santa did in fact deliver the gift. But he also tried to set it up, in which process the gift was ruined to the point where it no longer worked. It was, quite literally, a microphone with no microphoning capabilities. And I know, I know, it's not the gift but the thought that counts, but try telling that to a 9 year-old whose toy doesn't work. So Santa did what any reasonable fat guy with a liability problem would do in a bind:

He blamed it on Rudolph.

Turns out that clumsy reindeer had STEPPED ON my sister's gift. Never mind that it was delivered to an apartment with no chimney. Never mind that there was no snow in Houston and no good reason for a reindeer to slip. And really never mind that Santa should have left some time in his schedule to make a quick pitstop at K-Mart just in case. Nope, the reindeer did it, plain and simple. I know because I read it in the note Santa left by the eaten cookies. "Sorry about the Star Search Toy - Rudolph stepped on it. But I will tell your Daddy to buy you a new one. Merry Christmas." Um, thanks, Santa. Hey, at least you won't have to pay the elves any overtime for this one, right?

Exhibit C -- An American Christmas in Paris:

And finally, esteemed jurors, I could hardly allow you to make your decision without hearing the story of the famous Christmas in Paris, which sounds sweet and romantic (and was indeed a lot of fun), but might also top the charts for craziest Christmas ever.

The scene: Paris, an apartment on the Champs Elysee, temporary home to my parents, my grandmother, myself and a friend from Colorado, my sister, and about 35 of my sister's friends from both the US and her study abroad program in Spain. At one point I was more or less sure that I was actually living in a youth hostel done up to LOOK like a single-family apartment. But no worries, my friend and I went on the Paris Metro to purchase a small tree. It was "decorated" with whatever was handy and topped with a cheesy (um, make that CLASSY) souvineer tour eiffel. Fantastique.

Meanwhile, my dad became obsessed both with seeing every sight in Paris at the cost of our collective sanity (Note to self: do NOT allow dad to purchase "best of Paris" ever again, or similar book for another country. Ever.) and the idea of a traditional bouche de noel (literally Christmas Log, or Yulelog - a rounded, log-like cake with filling). Forget that most people under 30 in the house spent a significant amount of time in the pizzeria down the street and that we were all of legal drinking age in Europe, which made things...interesting. The Champs Elysee, meanwhile, had turned into a full-on carnival for the millenium celebration (my sister believed the Eiffel Tower would "lay an egg" at midnight. Seriously. She thought that.) and it was pretty much impossible to do a headcount at night without instituting strict roll call a la Little Orphan Annie or a military academy.

Luckily, Christmas proceeded (and most of the houseguests actually left right around Christmas Day, I believe), but the day after (also known as my parents' anniversary) brought a massive windstorm that uprooted trees, closed the Metro, and did serious damage to several French landmarks - including the windows of the Sainte-Chapelle. Major bummer. Our vacation is literally still a topic of conversation for many Parisians, although I'm pretty sure they're not referring to the damage we personally caused. Or at least, I hope not.

If so, I am TOTALLY blaming Rudolph.

Closing Argument

There is more evidence, of course, like the time the dog (the family dog - not Sampson) got a raincoat and hat for his "present" and caused the cat to freak out, the "Christmas bush" we once used to celebrate in San Francisco, and the fact that I for years insisted that a very tacky multicolored foil pine cone with fake snow be placed in a prominent position on our otherwise pretty tree. (Of course, now I'm old enough I have my own tree, and the lights are indeed multicolored. So there.) Most families I know watch "A Christmas Story" so that they can laugh at the ridiculous antics of Ralphie and his family. Not my family though -- we watch it because we relate. Quite honestly, it wouldn't surprise me one bit if I end up with a pink bunny suit one of these years. I have some very crafty aunts, after all.

And so, ladies and gentlemen of the jury, I rest my case. I know that if you consider all the evidence before you, you too will arrive at one simple, indisputable fact: Christmas with my family is, without question, a ridiculous, crazy, silly, wonderful, miraculous, beautiful day.

In short, we are guilty as charged. And I wouldn't have it any other way.


Merry Christmas, Happy Winter, and a Peaceful New Year to all our beautiful readers.

Piper and Sampson Bear Beatty

Friday, December 24, 2010

Merry Christmas to All

'Twas the night before Christmas, when all through the flat
Not a creature was stirring, not cockroach nor rat.
The stockings were hung on the windows, all there
For all of the family and dear Sammybear.

The streets were still busy, the stores all aglow
And in NYC there was still not much snow.
But better than snowflakes and better than cheer
Was the one special gift we were given this year.

'Cause when it turns midnight there will be no clatter
Of treatments and neb cups and all of that matter.
And those pills that I take are a small price to pay
For the knowledge that I will wake up Christmas day.

I'll spring from my bed with the greatest of ease,
I'll take a deep breath with no crackle or wheeze.
Then I'll run to my kitchen to grab some hot "joe"
And have one perfect Christmas, regardless of snow.

And E in her fashion and Sam with his toy
Will all settle in for some true Christmas joy.
While Mom and Dad truly deserve three big cheers
'Cause on Sunday morn they'll be hitched 40 years!

The lights will be lit and we'll say a quick prayer
In remembrance of loved ones, both passed on and here.
For those who are hurting, for those who are missed
And for all of us living, so joyful and blessed.

And we'll each give a moment to offer a smile
To the heroes out there who went the extra mile.
To those who save lives and to all who help fight:
Merry Christmas to you, and to all a good-night!

Wednesday, December 15, 2010

A Christmas (Party) Story, And Then Some

Okay, so picture the scene: A beautiful, charming, stylish, and incredibly witty young woman enters a Christmas party. Let's just say (purely for the sake of argument, of course) that she is pretty much exactly 6 months out of a double-lung transplant for cystic fibrosis. She is also, it goes without saying, very humble and modest. Obviously.

At some point during this little get together, an old friend approaches. He smiles at our heroine and strikes up conversation. And then, having gone through a few basic courtesies, he launches right into the million-dollar question. "So," he says, eyes twinkling, "what have you been up to for the past couple of years?"

Wow. Are you sure won't settle for a detailed explanation of the laws of physics? Because I'm guessing that would be simpler, and take less time.

Okay, fine. I guess the simple answer to that question is right there on the left sidebar of this blog. After all, this is where I've been chronically my journey for the past 2 years, so what better place to look for a neat and tidy little explanation of the transplant experience? And right about halfway down is the handy little "blog label cloud", which proves that the 3 biggest topics discussed here have been the following:

Transplant, IVs, and Life.

Yep, I think that about sums it up. Thanks, label cloud!

The last year and a half of my life -- starting in about May or June 2009 and continuing right up to the present -- have pretty much been dominated by the idea of transplant, and for good reason. Actually, if you want to get technical about it, transplant started taking over way back in January 2008, which is when I first started the referral process for my evaluation. Because I gotta be honest here: once someone suggests that you might be better off ripping out one (or two) of your organs and replacing them with parts taken from a dead guy, well, let's just say it gives you something to think about, to say the least. I think, though, that for me in particular the idea of transplant really became kind of front and center in mid 2009, if only because that's when I officially left my job, asked my mom to move into my apartment, and got officially listed for new lungs. In other words, that was the time when transplant moved from an abstract concept that hovered generally in my future to a more concrete medical step necessary to save my life from end-stage cystic fibrosis. Wow, what a ride.

And, coincidentally enough, June 2009 is also the time when the topic of IVs hit center stage for me. Don't get me wrong here -- I was on IVs more often than not throughout most of 2008 and definitely the first half of 2009 (not to mention at least once or twice a year, every year, starting at about 16 years old), so they were already a well-established part of my life before that pivotal month. But it was in June of 2009 that I began, while on a boat trip off the Turkish coast of all places, to experience the fevers and other symptoms that heralded the impending demise of my first implanted port-a-cath after 9 years in my upper left arm. And it was, in turn, the death of this first port (and the systemic infection that accompanied it) that marked the official start of over 1 year of continuous IV antibiotic use. Oh, sure, I've had two or three short breaks -- with a definite emphasis on the "short," since none so far have lasted more than a week or two, tops -- but the fact remains that they have been few and far between, to say the least. In fact, this morning my transplant doctor examined my port and commented that it was a bit red. My response? "Give the poor thing a break." It's been working non-stop for a year (which is when I got port #2 placed, by the way). It is very, very irritated, and you know what? I don't really blame it.

Of course it goes without saying that I am grateful. I am grateful for the advancements made in transplant and the donor who offered his organs to save my life. I am grateful for the option to have a double-lung transplant, as I know it is a privilege that some never get to experience. I am grateful for there are IV drugs that still work and for the new, infection-free port that feeds them to me.. I am grateful for the doctors, family, and friends who have seen me through all of this. All of which is NOT at all to say that I'm not a little irritated with the whole process at this point. Because, just for the record, I totally am.

On the other hand, every minor (or even major) irritation along the way seems to come with a payoff now, and I guess that's where the whole "Life" thing comes into play. Because the last year and half -- and in particular the last 6 months -- have been, in many ways, more filled with life than I ever dreamed possible. I have been absolutely elated at new possibilities and tragically sad as I mourned the loss of my old lungs. I have been terrified of death and exhilarated by the hope and faith that everything would turn out as it should. I have triumphed and I have failed. And, more than anything, I have loved and been loved a million times over. Which is, in my mind, kind of what makes life worth it anyway -- and it definitely reinforces the idea that "Life" has made a up a very pivotal part of my journey. I hope that continues to be the case far, far into the future.

All of which the young woman briefly considered explaining to her friend before finally giving a huge smile and opting for the far more succinct: "well, it's been one hell of a crazy miracle, but I'm extremely grateful to have been given the chance to come along for the ride."

And I couldn't have said it better myself.


Speaking of Transplant, IVs, and Life, I had my 6-month check up today at my transplant clinic. Overall, things are still going great with these beautiful new lungs. My FEV1 continues to hover at about the 78-80% range for FEV1, which is pretty darn impressive when you consider where I was just a few short months ago. I am having some very minor symptoms, which led to a nasal swab to check for viruses and a bronch -- likely scheduled for later this week. I'm at peace with the plan, in part because I still feel pretty fantastic and in part because i still really trust my doctor and care team. As tough as transplant can be sometimes, they seem wise, compassionate, and capable in their approach to dealing with any issues that arise. And as much as I hope that the bronch doesn't lead to more IVs (because come on, let's face it -- I.DESERVE.A.BREAK.ALREADY!), if that does, in fact happen, I know that I'll deal with it and move on. Because IVs, while admittedly super annoying, are really just another part of Transplant when you get right down to it. And that, my friends, is just a fact of Life.

Enjoy the season, beautiful people.

Tuesday, December 14, 2010

All I Want for Christmas (Is My Two New Lungs)

Every year the holidays roll around and hundreds of CF/post-transplant spouses and significant others are left struggling with what gift to buy their sensual, scarred sweetie. Tragically, many of these clueless Cassanovas will miss the mark entirely, presenting their beloved with a gift basket of grapefruit or a membership to the Raw Meat of the Month Club. But don't be one of them! Let us help you stuff her stocking and trim her tree with helpful and exciting drugs from all walks of post-transplant life. Trust us, she (and her lungs) will thank you.

Prograf: Sure, it's predictable, but the classics never go out of style. This pill is as important as the little black dress for the transplant patient who truly wants to strut that new organ in style. It also comes in a wide assortment of dosages (each with its own color!) for your convenience. Try .5 mgs if you're shy, or hit the ground running with the 5 mg stunner and show her how much you really care. Bonus features of this gift include frequent blood draws, a sexy tremor no one can resist, possible long-term neurological issues, and some sleepless nights thrown in for good measure. We bet you'll know how to fill the extra creative.

Cellcept: Kinda like prograf, but bigger and harder to swallow! This (not so) little pill is perfect for the transplant patient who enjoys trying out new viruses and crazy bacteria that remain relatively unknown to the general population. Thought the Bubonic Plague was extinct? We bet Cellcept can prove you wrong! Use of this drug practically ensures that you'll have at least a few days a year of quality bonding time in your local doctor's office and/or hospital. Also perfect for anyone who enjoys that special thrill of seeing their partner in a germ mask. Sexy.

Prednisone: Do you know someone who might truly enjoy injecting with insulin, eating two entire pizzas washed down with pickle-topped ice cream sundaes and three family-size bags of potato chips, then burning off the calories with a round of insomnia-fueled mania -- all while crying hysterically over that rerun of Saved By The Bell where Jessie got addicted to caffeine pills and was "so excited, so excited, so...scared"? Does that special patient in your life ever stand in front of the mirror dreaming of a rounder face and possibly some gorgeous facial hair to complete that "sexy cavewoman" look we all crave? Have a friend or family member who's recently been complaining that her mood is too darn stable and her weight too effing predictable? If you answered yes to any of these commonly asked questions, then you definitely need some prednisone for her stocking. Just make sure you hide your serving of the holiday dinner somewhere safe (and preferably padlocked) before she opens her gift.

Valcyte: If you crave side effects but immuno-suppressants just aren't your style, let our personal pharmacy shoppers hook you up with some fabulous Valcyte. CMV ain't got nothing on this little pink pill, we promise. And if you really want to show her you care, why not consider upgrading to the IV Ganciclovir version? We guarantee this little gift will have her Craving More Valcyte before the year is over!

Antibiotics/Antivirals/Antifungals: And just in case your special someone isn't a CMV mismatch, never fear: we've still got you covered! These drugs can treat everything from paraflu to pseudomonas to all the stomach problems that come as a direct result from treating paraflu and pseudomonas*! Still not sure this is the gift for you? Let us put your mind at ease: if your beloved is ever planning on going out in public again -- ever -- she needs these drugs. She probably needs them just to sit in the same room with you if YOU ever go out in public again, and she definitely needs them if she ever plans to eat anything. Seriously. Buy them. Now.

*Note: the author of this statement makes no representations as to the actual effectiveness of such treatment at actually easing the nausea, digestive issues, and other stomach problems that might arise from antibiotic use. She just knows from experience that too many antibiotics leads to stomach problems that lead to more antibiotics. Why this works (in theory, at least) is completely beyond her understanding of the human body. As an aside, she also admits that she did NOT do well in high school biology, which probably explains a lot.

Beta-Blockers: Need a gift for the transplant patient who has everything? Do you want to make sure your token of love goes straight to her heart -- literally? Then let us suggest beta-blockers. These drugs are 100% guaranteed to slow the heart and lower the blood pressure, likely while lulling your beloved into a nice, drowsy state that may or may not cancel out the insomnia and/or mania induced by other drugs on this list. And while a slow heart rate and lower blood pressure might not be exactly the response you're looking for in the heat of the moment, let us assure you that they are better than the alternative in this case.

All The Old CF Staples (Or Many of Them, Anyway): Hey, let's face it: sometimes it's just hard to let go. For the nostalgic among us, why not try a gift of some of your old favorites? Pancreatic enzymes? Yes, please! ADEKs/Source CF vitamins? Sign us up! Hey, even the occasional round of TOBI, Colistin, or Cayston can make an excellent stocking stuffer. Remember: we all like to be surprised once and a while, but some drugs are simply not going anywhere -- just like her CF pancreas!

Of course, if none of these suggestions tickle your fancy, be sure to check out our "Save on Healthcare Insurance Today" (SHIT) gift card program for .2% discounts off your loved one's next insurance premium, doctor's visit, or drug copay*. Sure, it ain't much, but with the current healthcare system, you should be glad we're offering anything at all. Gift certificates run $1,000,000 each and carry a maximum value of $5. Trust us, it makes sense.

*Discounts cannot be used to purchase any drug commonly taken by humans or to visit any licensed medical professional other than those who possess x-ray vision and are able to leap tall buildings in a single bound (some exclusions may apply within this category). Certificates are void on weekends, holidays, and any day ending in "Y". Gift cards purchased through the SHIT program are non-refundable and may result in higher payments in the long run. We apologize for any inconvenience these restrictions might cause and assure you that our staff is working on a timely and effective solution. In the meantime, if you have a problem with any of the above, please keep quiet and do nothing -- as anything else could seriously dampen our holiday spirit and bottom line. Thanks in advance from the Scrooge Healthcare System!

Happy shopping!

Sunday, December 12, 2010

A Prayer in Celebration of Time

And time yet for a hundred indecisions,
And for a hundred visions and revisions,
Before the taking of a toast and tea.
--T.S. Eliot (The Love Song of J. Alfred. Prufrock)

Time is kind of a funny thing, when you think about it.

5 months and 29 days ago I couldn't breathe. I could barely put one foot in front of the other without feeling as though the world was falling out from under me. I woke at night coughing, gasping -- startled out of slumber from dreams where I was drowning in a swirling ocean and unable to break the surface. I preferred to sleep on my couch over my bed, not so much because of physical comfort (there was, in my mind, no such thing as real physical comfort anyway), but because somehow I had the sense that in the living room it would be harder for me to slip away entirely. Proximity to people -- to anyone, really -- became my lifeline. Literally.

5 months and 29 days ago, by the way, my dog preferred to sleep elsewhere as well, mostly with my mom. My continuous coughing and weird gasping left him visibly uncomfortable, and his puppy brain compelled him to offer me gifts of his favorite squeaky toys or bones and then retreat, if possible.

5 months and 29 days ago, throwing up was an almost daily occurrence -- not that it ever got any less disgusting, mind you -- and eating was a serious chore on par with other nearly insurmountable tasks, such as climbing a short flight of stairs or walking to the end of the block.

But 6 months ago today, all of that changed.

Today marked exactly 6 months from the day I was wheeled into surgery around 1 in the morning with mucus-filled CF lungs and wheeled out about 5 hours later with wonderful, brand new (to me, at least), healthy lungs. It is 6 months to the day from the moment I awoke in the Cardio-Thoracic ICU, unable to speak because of a ventilator tube and unable to think straight because of a ridiculous amount of drugs, but desperate to communicate about everything from my thoughts regarding visiting hours to my desire to know my O2 saturation and heartrate. 6 months since I sat in my bed taking stock of each individual digit (my memory is of slowly moving one finger, then thinking to myself "okay, that's alive" and moving on to the next small appendage, which is somewhat of a testimony to one's emotional state right after such a major, life-transforming surgery). And it's been 6 months, to the day, since my support team near and far read this untitled post by my beautiful sister, and left the comments that would make me laugh, smile, and use 10 minutes worth of strength and concentration to try and formulate some form of reply to in the days to come.

It was 6 months ago that nearly a year of waiting on the transplant list and 28 1/2 years of treatments, airway clearance, and lung infections were brought to an end. (Well, that's almost true -- I remain susceptible to lung infections, though the scale is different, and I was sent home from the hospital on airway clearance, nebu lizers, and IVs. I have since dropped the airway clearance entirely, and hope the other two will follow suit in due time.) I have spent 6 months learning the names, dosages, timing, and side effects of my new rainbow regimen of anti-rejection, anti-infective, and other drugs. 6 months since my medical vocabularly expanded to include things like CMV-mismatch and bronchiolitis obliterans syndrome (BOS). And it's been 6 months since I began the lifelong learning process of how to deal with life when the lungs that keep you breathing are no longer the lungs that were made for your body.

How weird to think about on an intellectual level.
How crazy to even imagine.
How beautiful to experience.

And now, 6 months from that day, that hour, that instant when the whole world turned upside down and inside out and backward: I. Feel. Amazing.

  • I have walked miles along the beautiful streets of Manhattan.
  • I have visited friends and spent nights unencumbered by treatments or O2 concentrators.
  • I have celebrated 29 incredible years on this Earth.
  • I have purchased a new apartment and had dreams about a new life and all that comes with it.
  • I have attended my sister's fashion show.
  • I have had people tell me to slow down while walking because they can't keep up.
  • I have annoyed my dog by refusing to stop our walks when he wants to linger.
  • I have lifted my glass in toast to my godmother on her 60th birthday.
  • I have laughed and not coughed . . . honestly.
  • I have been blessed with a community of CF/transplant friends who share my doctors and with whom I can speak openly about any issues that arise.
  • I have chased and played fetch with my puppy, who is no longer afraid of my breathing
  • I have, and will continue to, give thanks for every moment -- even the not-so-wonderful ones.
I have also visited my doctor more times than I can count, had well over 10 bronchoscopies, been treated twice for mild rejection (once with oral steroids, once with IVs), endured several rounds of IV antibiotics, cultured a couple of new bugs along with some of the old critters, watched friends suffer from chronic rejection, given myself shots for blood clots and low WBC counts, received weekly blood draws to test the drug levels in my system, and suffered shakiness, migraines, high heartrate, insomnia, changes in my appearance, and nausea -- to name just a couple of the many, many side effects. None of which change the fact that, for really the first time in my entire life, I can take a deep breath and actually feel it reach down into my lungs.

I haven't made much of a to-do about this half-year anniversary, to be honest. I'm not sure if many of my friends or even my family members realize that today marked 6 months on this unbelievable roller coaster ride. And that's fine with me, because as far as I'm concerned I don't need to be anything except Piper in their eyes. I don't need to be someone 6 months out of a miracle when I could instead be someone 29 years into being a friend, a daughter, a sister, a lover, a cousin, a coworker, and, quite frankly, a force to be reckoned with (for better or for worse). And honestly I feel that perhaps the greatest gift that my beloved Donor Bob gave me with these lungs was the freedom to move through existence not just as a patient 29 years into CF or 6 months into transplant, but as a woman with part of her life behind her -- and a whole lot of living yet to come.

So thanks, Bob, for the breathing and the beauty. For the miracles and the mistakes. For the smiles and the sighs. For everything that you've helped make possible in these last 6 amazing, indescribable months. And for all the wonder we have yet to experience together. Because, God willing, there will be plenty of time.

For everything.


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,

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.

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.

Monday, November 8, 2010

Miracle Marathoners and Radical Runners

Okay first of all, I think it's time for me to swallow my pride and offer you guys a serious and very heartfelt apology. I know I probably qualify for worst blogger of the year award at this point, a title that I'm 100% ready to accept for myself given the complete lack of updates for the past month. What I am not willing to accept is the fact that I apparently worried some of you with my unannounced hiatus taken right after the announcement of some minor medical issues. And for that, I am truly sorry. Please rest assured that I am fine, have finally come off of the IVs and many of the oral antibiotics, antivirals, and antifungals I was using to combat these infections, and have simply been taking some time to 1) live my life, and 2) reassess the direction in which this blog is going to go from here on out. But I'm back, I promise, and I'm going to be around a whole lot more starting right about now (cue the scary music, right?). So please stay tuned for some pretty cool new stuff that is in the works.

Anyway, I just couldn't let this weekend pass without mentioning a few absolutely awesome people and flat-out fantastic accomplishments. These four individuals inspire me to no end pretty much every single time I get the pleasure of seeing or talking to any of them, and I thought it important to share their incredible feats with the rest of the CF community.

1) Remember Ben? Well, on October 10, 2010 (10/10/10, for those who like that sort of thing), Ben ran in the Chicago Marathon to benefit the Cystic Fibrosis Foundation. Despite ridiculously hot temperatures that left him dodging fellow runners who lost their gatorade in the middle of the run (um, ewww), Ben not only finished but also beat his 2009 time for the NYC marathon and raised several thousand dollars toward a cure for CF. As an aside, tomorrow is also Ben's birthday (and that of his twin brother, Nate). Congratulations to both of them, and a HUGE thank you to everyone who donated, to Dianna and George (Ben's amazing parents, who were also a big support throughout my transplant), and all the runners on the CFF team. Well done, guys.

2) Many of you have probably heard of Emily Schaller over at Rock CF and Mandy Sharpe at Run Sickboy Run and CysticLife -- both incredible women doing awesome things for the CF community and beyond. Well, they've done it again. These two are collaborating to bring you the Outrun CF Virtual Run event.

-What: A fantastic event where CFers and their loved ones/supporters from all over lace up their shoes and hit the tarmac/trail/track to show their commitment to fighting CF and staying healthy. Held on March 20, 2011 (the same day as the Rock CF Half Marathon), this event will allow you to participate without the pesky trip to Michigan (although people in the area should totally head out to the real deal!).

-How: Easy. Just register, track your training using all the helpful tools provided, and then on the big day head out to run as much or as little as you can to show CF who's boss.

-Where: Your town, your street. No travel required.

-Who: You, of course. And all your friends and family. Naturally. Because I happen to know all my readers are some seriously cool people, and you must have some seriously fun people in your life willing to take this challenge for themselves and for YOU.

I'll be running, and so will Donor Bob (or his lungs, anyway). Hope we'll "see" you all there!

3) Okay, this one No joke. Nearly a year ago I was blessed to make the acquaintance of a very special man with CF who was also awaiting transplant at my center. He had a tough wait and many dry runs (though I would ultimately beat him on that score, ha), but his commitment to exercise and his never-say-die attitude convinced me beyond a shadow of a doubt that he would get his lungs...and he did. Several months before me, in Nov. 2009, my friend received his perfect match -- and then blew us all away by being out of the hospital in a mere 6 days! And now, less than a year later...well, I can't even describe the awesomeness of what he's doing. Just go HERE and see for yourself. Trust me, you don't want to miss this.

Congratulations, Tim! We are all so proud of you!

(His wife, Beth, also runs a CF charity that deserves a shout out as well. Check out Breathe for a Cause.)

As an aside, Tim and I were lucky enough to share a surgeon to whom we will both be forever grateful, as we are to the entire team at our center.

Love and light, beautiful people.

Wednesday, October 13, 2010

Of Bugs and Blessings

Okay, seriously, I think something out there is mocking me for complaining about not really having much to write about on the CF/transplant front lately. And when I say "mocking," what I really mean is "trying to drive me insane." Because there has been A LOT going on here in the past couple of days. And while it's mostly not what I would call particularly good news, it has served as a much-needed reminder of all I have to be grateful for, and everything I've gained since June. Which is, you know, never such a bad thing to be reminded of when you get right down to it. On the other hand, I think I've learned my lesson now.

Can we go back to boring, please? I promise I'll be good and not complain. Honest.

The first thing that happened, as you may or may not know from the blog, is that I had a bronch and got a little sick. That, in and of itself, is neither uncommon nor a particularly bad sign. Most likely it was more a reaction to the sedation anyway, and not any sort of indicator of overall health. Because the fact of the matter is I feel more or less fine, and I certainly felt great going into the bronch. If anything I've been living life a little too much lately (wait, is that even possible? But I know you guys understand what I mean). It just feels beyond amazing to be able to breathe, to have the freedom and the energy and the time to go where I want and do what I want and come home and not be run ragged. I can't even explain it. And that is definitely blessing number 1, since we're counting and all.

But anyway, I got a little sick (okay, fine, it was a lot sick - only it was for like 2 days instead of weeks, which is the big difference between now and before if you ask me), and then I got better. And then we found out that I had pseudo and aspergillus growing in my lungs - most likely stowaways from my CF lungs that had been hanging out in my sinuses and main airway, both of which still have CF of course - and we started treating those with IVs and nebs and orals, just to be safe. Which, of course, was all well and good especially for those of us in the "better safe than sorry because I no longer have an immune system to speak of because I (heart) my lungs and want to keep them" camp. Basically I was grateful to have treatment options, grateful to be able to do things from home instead of in the hospital, and grateful to have had 3 weeks off of IVs from Sept until October. All was right with the world.

A couple of days ago, my doctor called to tell me I had a new pathogen in my lungs - one not there (to any of our knowledge) before my surgery. This new bug is called Steno Malt, and interestingly enough another of my CF friends had recently cultured it as well. (Interjection: not only is this bug not passed person-to-person, but this friend lives out of state and I haven't seen her since my transplant, nor have we exchanged anything by mail. So unless the bug jumped out at me through her FB page, I'm guessing this isn't a cross-contamination issue. If bugs are spread via FB, on the other hand, the CF community is, in a word, screwed. Talk about giving new meaning to the term computer "virus.") Okay so fine, I have Steno Malt. The good news is that with my new lungs not having CF nothing is likely to colonize in there. So we discussed treatment plans, added some antibiotics, and I went on my way. No used crying over, um...spilled (Steno) Malt?

Fast forward to today, when I got yet another call from my doctor. Yeah, that's right, here we go again. Only this time it was a little weirder and little more creepy, to be honest. Apparently I have a mycobacterium in my lungs. No word yet as to which - only that it is NOT tuberculosis and NOT mycobacterium avium complex (MAC). I guess that means it may be abcesses, but again - we're just not sure. I am going to take the cautious route and have a CT to check for any possible nodules, which can be a byproduct of these bacterium and can, so I understand, cause all sorts of problems. Depending on the results of that, and the culture when it finally grows out, we'll devise a treatment plan (if any). In the meantime, I figure I can only make the situation worse by freaking out. Many of these myco strains aren't even really issues, and again, it's unlikely to colonize at this point from my understanding. Also, I can't stress enough that I don't appear to have an active infection right now. I'm feeling pretty good (tired from the drugs, but good), and my PFTs are totally stable. I'm so so grateful for that - and for the fact that my new lungs are still holding up beautifully despite this onslaught. Sorry, CF, you're gonna have to take your reign of terror elsewhere, because I'm not buying it. Welcome to blessing number 2.

I kind of feel peaceful about the whole thing, or as peaceful as it's possible to feel while still being (admittedly) a little freaked out. I have an entire team of great doctors who seem to be all over this - I even ran into my CF doctor yesterday and she's being consulted as well. Nothing makes me feel more secure than knowing that they have a plan (even if that plan is to do some tests and see...or even just wait) and that they're communicating that plan to me. The fact of the matter is that I trust them. A lot. And I feel very well taken care of, much as I may joke about them being hyper-vigilant. So right there: blessing number 3.

And finally, I realized at about 12:30 am this morning that yesterday, October 12th, was my 4 month transplant anniversary. Has it really been that long? And at the same time, has it really ONLY been 4 months? Wow. At first I felt a little sad that I had let the day pass without a celebration, to be honest. I mean, not that I need a reason to put on a fun dress and indulge in some really yummy food, but it's always exciting to have a special occasion, right? And then I realized that I hadn't noticed because I was too, well...busy? Happy? Not sitting around thinking about being "sick," even in the midst of all this madness? And that, friends, gave me more cause fr celebration than anything. I actually laughed out loud. To actually have a transplant anniversary is an amazing gift. To have a life so fun that you can actually forget about that amazing gift, if only for a short while, is, in a word: indescribable. Not that I would ever want to stop acknowledging and being grateful, but to have the chance to live so hard that I don't even think about my lungs? I honestly never thought I would type those words. Blessing number 4, and 5, and infinity. That one counts for everything.

Oh, and thank you, donor Bob. We make an exceptional team. (PS: Sorry about the pseudo, and the steno, and the myco. Wish I could make these silly bugs leave OUR lungs alone!)

So yes, I've learned my lesson. I'm back to counting my blessings out loud, which always seems to help when I feel a little overwhelmed, and to be honest I keep coming out ahead in my tally. I know how lucky I am to be able to look at this as a "rough patch" rather than the rest of my life. I know how precious and fragile this gift is - how much it is meant to be loved and enjoyed and cherished for exactly what it is...not a cure or a rebirth so much as a beautiful awakening. I know that God has given me this peace for a reason and that I should trust. Mostly I just know that I'm happy and busy right now, and so far it doesn't seem like the pseudo or the myco or anything else has been able to take that away from me.

I also know that CF sucks. You know, just sayin'.

Hopefully I'm well on my way to getting back to boring. In the meantime, I'll just try and enjoy the ride as much as possible. And hopefully I'll keep on forgetting what day it is, even as I try to always remember to be grateful for each and every one.

**PS: Please take a second if you haven't already to check out the links on CF/transplant over on my sidebar. I recently added two amazing blogs (A Breath of Fresh Air and Seven Stars) by two wonderful women with CF who also happen to be personal friends and role models of mine. Everyone else on there is great too, and please send me an email if you'd like your blog on the list. I'd love to check it out.**

Wednesday, October 6, 2010

Perfect (Kind Of)

Wow. Okay, so where to begin? For lack of a better intro, I'm just going to start with the important stuff:

I've been really, really sick.

Seriously, when I say "sick" this time, I really mean sick. As in, unbelievable-grossness-meets-super-sedated type sick. Or like...well, like CF sick, really, so I'm sure a lot of you out there know what I'm talking about. The high fevers, vomiting, lack of appetite, high heartrate, low O2, would-get-scared-but-any-emotion-just-serves-to-make-my-headache-worse kind of sick that no one ever really wants to go through. And I have to be honest, it wasn't particularly pretty. And of course it was compounded by the ever-amusing (except when they're not, in which case they are really, really NOT -- trust me on this one) effects of sedation. Wow. Good times to say the least. I think the only thing more fun than being hunched over the toilet while running a fever is being in that position and then looking around and not knowing exactly where you are or how you got there. Yeah, it was just that amazing.

That said, I survived. Thanks to the help of some very wonderful friends willing to put up with my randomly spouting nonsense due to the drugs and, of course, the passing of our good friend time, I was pretty much back to "normal" within 24-48 hours. Of course, the definition of "normal" right now for me includes both an aspergillus (fungal) infection and a pseudomonas (bacterial) infection. So no change to the plan, as I'm still doing the IVs, but now I get three drugs instead of one. Oh well. I'm kinda of the mindset that once you're on it really doesn't much matter -- might as well load the suckers up and wipe out everything at once, right? And the best news I got today (which is also, come to think of it, pretty much the best news possible...ever) is that the results from my biopsy are back and there is NO rejection. Question: is it weird that I feel an odd sense of victory over my own immune system? Not sure if that makes me the winner or the loser, honestly, but it means I get to keep breathing, so I'll take it.

As we used to say in college: major score, baby. (Which statement, by the way, has the unfortunate side effect of making my college friends and I look bad. We weren't normally this uncool. I promise. Kind of.)

Okay, so all that aside: the fact remains that for the past two nights there has been a sick presence in my apartment. On Monday night, without question, I took the grand prize. On Tuesday night, however, things got a little murkier.

The short story is that Sampson got the hiccups. I'm not entirely sure how it happened, though I think it was brought on by literally inhaling two organic mini milk bones. I'm pretty sure those things are just expensive crack for dogs, because Sam goes at them like a deprived junkie every time I head toward the treat closet. Which, to be fair to me, is less a "treat closet" than a "treat shelf" -- my dog is not spoiled enough to have his own closet, though I readily admit that the distinction is a fine one.

The larger point here is that, having acquired the hiccups, Sampson went what could maybe be politely termed "crazy." There are less polite terms, but I'm not going to mention them here, because they'll make my dog look like some sort of Dr. Jekyll and Mr. (Raw)Hyde. Suffice it to say that this was not good. In his panic, Sampson began by jerking around in a pretty solid imitation of a seizure, or an electroshock therapy patient -- by which I mean all-out, on-the-floor style convulsions. And, to be perfectly honest, he does this sometimes. (Yes, I'm aware that I am indicting myself for possible puppy neglect here, but it has, as a matter of fact happened before. My mom has even seen it. In my defense, the vet has declared him seizure free.) So I sort of wait the convulsions out, at which point he starts tearing around the apartment like a madman. And that's impressive, since the entire apartment is only three rooms and has hardwood floors. I swear that dog hit so many walls that if he wasn't prone to seizures before, he may be now. After which mad dash he ended up in the bathroom, he grabbed his bone for some hardcore gnawing, then ended up in my bathroom "digging" his way through the bathmat, and generally acting distressed. His grand finale included throwing himself on my bed and whining while trying to snuggle closer and closer to my body, and that continued until the hiccups subsided -- about 20 minutes later.

My emotions during this display ran the gamut from amusement, to concern, to near-panic, to cornering the dog and determining that yes, he did in fact have the hiccups and probably wasn't dying, to second-guessing that, to annoyance, and back to amusement mixed with a lot of relief when it finally did turn out to be nothing.

Okay so sick shorkie + recovering Piper = kind of funny, kind of crazy blog post. Case closed, right?

Well, maybe. And then again, not so much. Because the interesting thing about watching this whole performance was the realization that when faced with the hiccups, Sampson turned into,

Yeah, you read that right. What I mean to say here is that apparently, when sick, there is something deeper and gutteral that tends to take over, especially when we don't understand what's going on with our bodies. (Try as I might, I was unable to fully explain to Sam the nature of hiccups. I actually had him drink some water and "promised" him that it would make him feel better. It didn't. Then I remembered how much I hate it when people make promises about my health that don't pan out. Shame on me.) At any rate, the reaction Sammy had, though probably more physical and overt than what I would have done in a similar situation, was something I could definitely relate to on some level. I've FELT that need to run around and try to escape whatever is chasing me -- I've actually acted on it, though with lung disease that one is hard. I've FELT that need to grab on to something -- anything -- familiar and distracting. To retreat somewhere dark and lonely where I can go crazy in peace. And finally, of course, to whine and seek comfort. That one in particular made perfect sense to me. Right, mom?

Granted, Sam was suffering from a case of the doggy hiccups. I'm not going to sugarcoat things here: transplant is not mild indigestion. Far from it. But having so recently experienced my own first "real" illness post-transplant, and acknowledging that I really do have no clue how to manage this "new" body of mine, I couldn't help but empathize with my scared little puppy. Not that I'm claiming this is some sort of mind-boggling revelation or anything, but I really do find some comfort in knowing that maybe I'm not alone in my reactions to feeling out of control sometimes. Maybe we all need a little retreat into the bathroom to try and dig our way to freedom from the tiles. And once we're done with that, it's nice to have someone to curl up with -- preferably someone willing to listen to you whine.

The moral of this story (if there is one, I guess), is that I've now had my first bout of random sickness post-transplant, and Sampson has suffered the effects of his own gluttony, and believe it or not we've both survived. Not that it was easy, or fun for that matter. It wasn't. We both had our moments of being scared, of not understanding, and of flat-out wishing we could run away. (If it hadn't been for my migraine, believe me, I might well have tried to dig my way out of the bathroom.) As it was, we were both about as lucky and as blessed as anyone can be in this crazy life. We got better. Which fact leaves us with the chance to start it all (again) tomorrow.

Perfect. Kind of. Maybe? For now.

Tuesday, October 5, 2010

Winding Road

I had a conversation with a friend the other day that went more or less like this:

Friend: So do you still run your blog now that you've had your transplant?
Piper: Yeah, but I'm starting to feel like a bit of a sham, you know, because I just don't feel like I have a lot to write about these days on the health front. Not that I'm complaining, but I'm a health blogger who is, well . . . healthy (relatively speaking, of course). Where's the fun in that?
**Cue loud barking by Sammy apropos of absolutely nothing**
Friend: Well, your dog's pretty crazy. Maybe you could blog about him if you run out of health stuff?

Just a warning, by the way: This blog is NOT going to be about my dog.

I had a bronchoscopy yesterday as part of my 3 1/2 month post-transplant work up. For those of you who might not understand what this means, the short description is that they sedate you heavily with fentynal and versed and then stick a probe down your mouth or nose into your lungs. Once down there they do fun things like check out your lungs with a camera, remove bacteria for cultures, and (if you're really, really lucky) pull off pieces of your lung to send for biopsy. Good times, right? Although to be fair, it's not that unpleasant of a procedure overall. I had one of these things pre-transplant to re-inflate a collapsed lung and have had several post (for over 2 months I was having them weekly), and frankly the biggest problem I've had so far is that I apparently don't do sedation -- at all. By which I mean they have to give me roughly the amount of sedatives they would normally give a 300lbs man, and even then I stay awake through the whole thing. But even that doesn't really bother me much. I guess I just really trust my doctor.

So anyway, yesterday's bronch really wasn't that big of a deal, in theory. (Other than the fact that my port is no longer accessed, that is, which meant that I had to get a peripheral IV. To the nurse's credit, it only took her a few tries.) I checked in, did the normal workup, and headed back to get my drug on, so to speak. The plan was a quick nap, wake up in recovery, then go home and get some well-deserved lunch.

Ever notice how things rarely go according to plan?

Here's what I know:

1) Despite the fact that I'm still on vfend and abelcet since my transplant, I now have additional aspergillus growth. In other words: more IVs. I get 4 weeks of mycofungin starting as soon as they come to access my port. The good news is I got a full 3 weeks off. Just off the top of my head I can't honestly remember when the last time I had such a long break was. How's that for a bright side?

2) Something happened during or after the bonch that made me, well . . . the nice way to put it would be "sick." The not-so-nice way to put it would be "what the hell?!" Seriously, the combo of fevers/vomiting/chills/etc and bronch sedation is not, shall we say, a particularly fun one. Let me put it this way: I'm used to being able to kind of "take charge" when I'm sick, particularly if someone like my mom isn't around. I can be wracked with fevers and having a near-death experience, and most likely I'm still going to be calling the shots and ordering people around. Unfortunately, post-bronch I can't really do any of that. Normally I go home and sleep for about 6-8 hours after those suckers, so clearly I wasn't in much of a state to make coherent decisions. On top of that, there was absolutely nothing anyone could do to "cure" the problem. I did have the presence of mind to contact my doctor, who had me keep an eye on things and was able to check back in on me today, but beyond that it was either go to the ER and wait it out there or just suffer at home. And of course I think almost any sane person would choose home over ER. And so I waited, and in the meantime kept drifting in and out of consciousness because of the sedation, which of course made the fever seem even scarier for those on the outside. Did I mention that this is not such a good combo? Every time I tried to rally long enough to explain what was happening I got blank stares, probably because for all I know I wasn't even forming a coherent sentence. All of which, I maintain, was not my fault.

Ending hatred, securing world peace, and curing all diseases known to man? Sure, why not -- anything's possible.

Functioning like a normal human being after essentially having been given elephant tranquilizers for breakfast? Not gonna happen. Period.

3) I'm still waiting for the rest of my results from the bronch and for whatever comes next. That's about it from the health front, so please just send some good thoughts/prayers/positivity up into the universe for me, and for all of us, whenever you get the chance.

4) Despite the fact that I promised this blog would not be about Sampson, I did notice yesterday during my random return to the land of the sick that his mood is 100% different when I'm under the weather. Among several weird behaviors, he began pulling all his toys 1 by 1 out of his toy box, a habit I remember from my pre-tx days but which I had more or less forgotten. He does this for comfort, I think, or to let out aggression, or perhaps even for attention. Maybe all of the above. But he does do it, and he also gets incredibly nervous as soon as I start acting "sick" again. Poor puppy. He's a good little guy, for all his crazy nonsense.

I guess in the grand scheme of things my life is still pretty "boring." I'm learning French, speaking to groups of med students, playing with my puppy, going to the New Yorker Festival (among other amazing things, I saw one of my favorite authors, Mary Karr, speak on Friday night), meeting new friends, and doing gyrotonics. And I guess above all I'm grateful that last night was such a big deal, because the fact of the matter is that I still remember a time when it wouldn't have been a big deal at all. And considering that such a time was really only 3 months ago, I have to say that I think I've come a long way, baby. I've just got a long way left to go, I guess.

But I'll get there.

Friday, October 1, 2010

Of Fun and Fire Alarms

Note: I originally wrote the following as an email sent to one of my friends, but then decided to share it here since it involves ridiculousness and Sampson -- two things that I happen to know you guys just can't get enough of. Just a warning, the language isn't really kid appropriate and some people may find it offensive. And this post has nothing to do with CF. Or transplant. Or breath in general. This one is all about life, baby. Well, life and a malfunctioning fire alarm, but that's just not as catchy. Enjoy.

it's 5:46. am. and i'm awake. writing you emails. and, considering that i have no job and thus rarely get up before about 9 am, i feel like this probably requires an explanation. luckily, i have one. and it's good.

the reason that i am awake and writing you emails has nothing to do with my inability to sleep. nor does it have anything to do with you. or with sampson. or, quite frankly, with any of the 9,876,542 legitimate reasons one might have for being awake and writing emails at a godforsaken time in the pre-dawn hours. i am not, for example, rushing to catch a 6 am plane. nor am i sick and on my way to the hospital via ambulance and/or helicopter. it has nothing to do with a natural disaster or the apocalypse.

nope, it has nothing to do with any of these reasons. what it does have to do with is a motherfucking battery.

i think.

roughly speaking, the story goes like this: at about 4:30 this morning, i was awakened by a very loud, very high-pitched, and very repetitive noise echoing throughout my not-so-very-large apartment. this was problem #1, and (given the fact that even very sleepy pipers have the logical reasoning capacity to realize that alarm = bad, although i freely admit that tends to be the extent of my skills at that hour) this problem provoked an immediate response in the form of movement from the bed into the kitchen/living room, aka the source of the noise and the location of BOTH of the two alarms in my apartment. um, yeah. we'll discuss the logic of placing two smoke/carbon monoxide alarms in a 3+ room apartment and concentrating both in the same room later. brilliant.

so anyway, i go into my living room. and i go in there alone -- meaning without my dog, who chooses instead to remain behind in my bed with his head (no joke) somewhat buried under my comforter. in other words, any delusions i might have had about guard dog grandeur go straight out my 18th story window. sigh. but i digress...

back to the point. okay, so i'm in the living room. and the first thing i notice is that there is 1) no fire, 2) no clear signs of a fire in another location, such as smoke, heat, or large men in red raincoats. this is a good thing, in theory, except that it leaves me with no explanation for the still-wailing alarm aside from either malfunction or carbon monoxide, neither of which sound like entirely pleasant options. i open the door to my hallway and discover that no alarms appear to be going off in any of the other apartments, which means it's just me disturbing the peace. lovely. i contemplate leaving the door to my apartment open on the theory that if i can't sleep, no one else should either (and by "no one else" i may or may not mean the devil child down the hall in particular), but neighborly goodness wins out in the end and i retreat back into the apartment and close the door. i deserve a medal for being nice. even worse, the noise appears to have gotten louder during my brief stint in the hallway. maybe it's relative. i think it's more likely a conspiracy of badness against me. yeah, that's right: a conspiracy of badness. you read it here first.

to add to the fun, sampson has heard the door opening and closing during my departure from the apartment. and apparently his fear of being left alone is greater than his fear of loud noises, because my big brave boy has now come into the hallway and is looking frantically at the door. when i return, he bolts into the hallway. okay, fine, except that i clearly have to close to the door to keep up the general misconception on my floor that i am, in fact, a nice person rather than a raging bitch who enjoys torturing her neighbors with loud noise at 4 am. which leaves me with two options: either close the door and leave the dog in the hallway, or call the dog back into the apartment and close him in with me. normally, of course, this is a no-brainer, but as i may have mentioned, my apartment at this point in time is really fucking loud. and my dog has just proven himself terrified of the loudness, so it seems kind of cruel to make him come back inside. in the end, i opt to allow him to stay outside the door while i go back in to deal with the noise. exeunt the shorkie, stage left.

the next step is obvious: call the building doormen and whine. so i do. and proceed to have the following conversation with my doorman:

doorman: huh, i can hear the alarm going off [by which he means he can hear it over the intercom because, as i have already pointed out, my apartment is REALLY fucking loud].
piper: yeah. i don't really know how to fix it, or even what the problem is.
doorman: is there a fire?
piper: i mean there's no smoke, there's no smell, and i don't see any fire. it's not a very big apartment.
doorman: is there any carbon monoxide?
piper: i don't know.
doorman: well can you smell it?
piper: carbon monoxide doesn't smell. that's why you need an alarm.
doorman: oh. well, i can hear it...

and so on.

it finally gets resolved that the doorman will send up a maintenance man, which would be great except he prefaces this declaration with the warning "but i doubt he'll be able to do much and i can't get anyone else here until morning. can you maybe just go to sleep?" mind you, this is after he has repeatedly mentioned that he can hear the alarm loud and clear even through the intercom. i kindly inform him that ignoring the disturbance until morning isn't really an option. then i hang up and begin considering dog-friendly alternate housing arrangements. at which point i become vaguely aware that there is yet another noise now competing with the alarm. similar in tone, annoyance, and general volume, this second noise is somewhat lower in pitch and appears to be coming from the hallway. so i walk in its general direction, and finally open the apartment door, which swings smack into a loudly HOWLING sampson.

so much for my neighbor of the year award. are. you. kidding. me?

the shorkie comes back in with me, then proceeds to jump up on his purple chair and commence shaking and crying. meanwhile the maintenance man arrives [his first words are "holy cow, it's loud in here!"] and requests a ladder. i give him a folding chair. after about 5 minutes of staring at the machine and occasionally poking it with his index finger, he returns to the floor and announces that he doesn't understand the problem, but will return shortly with a battery. he asks whether the alarm was going off when i went to bed. to ask this he literally has to shout at me, and i'm standing less than 2 feet away. why does the entire apartment staff seem to think that i'm capable of sleeping through this alarm? again, i say a polite no and resist the urge to point out that 1) it's really, REALLY fucking loud, and 2) it clearly WOKE ME UP, which means it probably wasn't going off before i woke up. the guy leaves in search of a battery. sampson continues to cry. i suddenly feel much more charitable toward people who use the expression "fuck my life."

fast forward about 10 minutes. the man has returned with a battery and is once again on a chair in my hallway. the shorkie has escaped out the door again and is sitting outside by the elevator bank. in an attempt to strike a balance between playing hostess to the maintenance man and being a responsible dog owner, i am also sitting in the hallway in my pajamas and occasionally pulling open my apartment door to stare at the guy on the chair and listen to him shout at me that he doesn't know how to turn off the alarm. which, you know, i could probably have guessed by myself, considering that the alarm is still going off. he also wonders how the alarm is able to continue terrorizing the entire apartment even without batteries. this is, in fact, one of the great mysteries of life, and i agree with him that it's stupid. if i want to remove my alarm's batteries and risk dying a fiery death, shouldn't it be my right to do so in relative peace and silence? also, given the fact that the alarm has now been blaring for well over 20 minutes and not a single person has emerged from another apartment, i'd say the argument that my alarm going off somehow protects other people in the building is more or less bullshit. clearly my so-called "neighbors" care nothing for me or for their own safety. next time i'm leaving the door open for sure.

five minutes later the maintenance man stops complaining about the noise long enough to replace the battery and the alarm stops. kind of. maybe? well, slows down anyway. basically the alarm goes from a constant blaring noise that is really, really, REALLY fucking loud to a more dignified single beep that is only kind of fucking loud every 2 minutes or so. which improvement is clearly good enough for the maintenance man, as he immediately jumps off the ladder and heads for the hills. as he reaches the elevator i venture to ask whether the building will send up someone more familiar with the alarm system in the morning. (or someone with a sledge hammer. i'm really not picky at this point.) he seems surprised and asks why i would need such a thing. the alarm beeps, triggering loud barking from sampson, who has decided that this more manageable noise is not as scary and therefore constitutes a chance to show off his manly courage in the face of any and all intruders. i am less than impressed. the maintenance man nods knowingly and promises to send someone up, but warns me it might be noon or later before they can get there. he advises me to go back to sleep. sampson growls warningly at the impudent alarm, and i wonder which of them is the inherently dumber creation before sampson begins licking my feet protectively. oh well, at least he's cute.

so now i'm in my apartment with a sort-of-tolerable alarm which may or may not have a problem other than the battery and a sort-of-lovable puppy who may or may not be the least brave animal on the planet, contemplating whether is hould attempt to go back to bed or just give up and make a shitload of coffee instead. all of which goes toward explaining why i'm sending this email at 6:06 am. and why i'm really, really excited to move.


Friday, September 24, 2010

Just Do It: Cure Edition

So I'm always going on and on around here about my awesome family, and sometimes I wonder if you all get sick of it. I mean, be honest, here. Are you tired of coming onto my blog all geared up to here (yet another) story about the life and times of a slightly crazy transplant patient and her very high-strung puppy, only to find yourself somewhat disappointed by the fact that all I ever seem to talk about anymore is my fabulously helpful mother, my fun-loving father, or my pretty much ridiculously talented sister? Yeah, I kind of figured as much. But fear not, lovely people, because I 100% promise to you all that this particular post that you are about to read will not be in any way shape or form about my fabulous family. No, really, I mean it this time.

It's gonna be about my equally fabulous friends.

Shocker. Bet y'all didn't see that one coming from a mile away, did you?

But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?

(Psst...he's the one on the right.)

Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...

So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.

Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.

But, of course, none of you need me to tell you that, right?

PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.

1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.

2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.

3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!

Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.