I Would Sing You a Song of Devotion

Alright, so I'm going to try out the blogging while vesting combo, which is a new thing for me. Oddly enough, I kind of consider treatment time to be "my" time -- I don't check emails, work, go online, talk/text with friends, or pretty much anything social while I vest or neb. I might watch TV, but even that's pretty rare. What I do do is read -- a lot. I love it, and hey, I'm a lawyer so I'm allowed to be a little nerdy here. But tonight I'm trying something new. Guess I'm feeling a little strange tonight anyway -- maybe it's because I just discovered that my puppy was spending his free time licking (licking!) my over-the-knee black suede Donna Karen boots. I'm pretty sure black suede and puppy spit are not a match made in heaven. But I digress. And anyway, now he's moved on to sleeping on a cashmere sweater that I had deposited on the top of the dry clean pile. Comfy, I'm sure.

Two night ago I woke up at 4 am coughing. Convinced it was a fluke or brought on by the start of TOBI, I pretty much just ignored it. But last night it happened again. 5 am and I was wide awake, coughing in that way that makes it seem stupid to wear the O2 tubing -- clearly you're not breathing through your nose anyway -- and totally unable to lie back down for a good 45 minutes. Then today the fevers started back up. So let's see, that makes it . . . 7 days exactly since I last stopped IVs. A definite new record for possible reinfection. Although aside from the cough (which wasn't too terrible today, but definitely present), I'm actually okay. My fevers are mild, my energy level and appetite seem to be holding okay, and my O2 sats are fine. So we'll see. I'm not going to freak out about this one, but I'm definitely pissed. Let's hope the TOBI works its magic soon.

The weird thing about it all is that I have to meet with my transplant team on the 6th of Feb and I know they're going to ask me how I'm feeling about the whole listing thing. And to be honest, I have no idea how I feel about it all right now. I've had way too many infections in the past year; I think I spent nearly as much time on IVs as I spent off them. My longest run might have been from March until June (3 months!) which at the time felt really amazing, but right now just doesn't seem all that impressive. Plus, while I definitely know that transplant is huge and has a lot of potential problems and is not to be taken lightly, I can't help but even . . . look forward to it? I want to be able to do things that I used to love to do: to ski and to run and to walk my dog all the time and to really be able to work for long stretches of time and not have to take off every few weeks for yet another stupid infection. I know it won't be easy, I know it's not a guarantee, but I honestly feel like it's a light at the end of the tunnel for me. I feel like there's nowhere left to go with CF but down.

On the flip side, I really want to delay the surgery until I absolutely need it, and my PFTs are still in the upper 30s. So I probably won't be listed next week, in all honesty. I probably won't be listed and things will continue pretty much as is, which is to say pretty damn good, but with a lot of interuptions. And here's where I have to take a second to honestly marvel at what my life still IS even with these crap lungs. How on earth did I get so lucky as to deserve a job that I love with people who are willing to at least try to understand CF and work with me, a family that could not be more supportive and that would sacrifice everything to help me through all this, and friends (although granted this group is more select) that seem willing to put up with all my ranting and sighing and wondering without forgetting that even though CF is who I am RIGHT NOW, there is a whole other side of me right below the surface? Even my puppy is incredibe, boot fetish aside: he puts up with a mediocre walking schedule and still loves me enough to want to sleep on my clothes. And that, I'm sure, is the very definition of devotion.

Anyway, the answer is pretty simple: I don't deserve all of the amazing parts of my life, but I'm pretty sure I don't deserve CF either, so it probably cancels out. In a really good, amazing, miraculous way, of course.

I do have pictures from the inauguration and I promise to post them soon. Just like I promise to clean my apt and do all my laundry and finally take in that pesky dry cleaning. Just as soon as I stop coughing.

Inauguration 2009

I just returned from DC this morning, so I am both exhausted and exhilarated, but I had to at least write a couple of sentences about my experience at Barack Obama's inauguration. First of all, just as background, my parents are very active in the Democratic party and I was fortunate enough to attend both of Clinton's inaugurations - swearing in, parade, balls, etc. So I actually do have a medium of comparison here, I promise.

This event was AMAZING. The energy, the enthusiasm, the raw JOY of everyone there was absolutely overwhelming. I've heard reports that anywhere from 1-2 million people showed up in DC for this thing, and you definitely felt the presence of each and every one. The media wasn't kidding when they called this "the people's inauguration." I even spoke to some people who didn't vote for Obama but still felt that the event was too historic to pass up. THAT is unity. And yes, I acknowledge that a part of that was simply racial politics in action, but I also think that's valid: the first African-American president IS a huge event. The fact that he is the son of an immigrant makes it, in my own mind, all the sweeter a victory. This was truly a moment to be proud of the doors we have opened and the obstacles we have overcome, if not wholly than at least in part. At least, that's this Obama fan's opinion!

I had the honor of watching the swearing in from a friend of the family's open house (on TV, but warm next to the fire and sipping a mimosa), and then on to a party on Pennslyvania Ave with a heated balcony overlooking the parade route. Michelle Obama is stunning, and the president has an energy and a charisma that exceeds his persona on speeches and on TV. The crowds of people would literally burst into spontaneous tears and shouting the moment he appeared on the stage/out of the car/on the parade route. People just couldn't help themselves. He is that inspiring.

I got to go to a ball as well, but I have to say that the daytime events eclipsed the nighttime for me. I think part of the fun was being among the crowds, wandering through the streets and drinking in the feeling of being part of history, part of an enduring moment. The ball, while fun and a great excuse to dress up, was really just a ball. I will say this: throughout every event at this inauguration, the running theme was diversity. Not just racial, but also background and age. I saw MANY more young people dressed up for balls on the night of the 20th than I ever remember seeing at Clinton's events, and also more people who told me (while standing in the freezing cold) about the great lengths they had gone to just to secure their place among those going out to celebrate our new president. Again, I really can't describe it - every single person I met -- democrat, republican, or independent -- seemed to be just overwhelmed with hope for whatever comes next.

The slogan for Obama's inauguration was "Renewing America's Promise." I personally thought his inaugural address was a good start. Even more than that, though, I was encouraged by the support and energy I saw among the crowds. Ultimately it's not the president who makes or breaks American policy -- it's the people's belief that change and unity are possible, and our own willingness to make that happen. And with Obama at the helm, I have to say: yes, we can.

Photo Tag Game

Thanks to Christy, who tagged me on her blog, I get to play a photo game. The rules are pretty simple:

1.) Go to your 4th folder where you store your photos.
2.) Select your 4th picture (no exceptions)! Seriously.. no exceptions.
3.) Post the picture with an explanation and link it back to your tagger.
4.) Tag 4 people to do the same!!

Okay, so here goes. This is my picture:

It's super humiliating, actually, and was meant as a joke - but at least it has a good story. This photo was taken on the Brazil/Argentina border, in a national park called Igazu Falls. It's amazing. A HUGE series of waterfalls that pretty much takes your breath away. My family took a trip to Brazil and then Argentina over Christmas/New Years 2005-6 and we went through the park as we crossed from one country to the other. And as an aside here, the southern hemisphere is a great place to spend the winter, since that is summer for them.

This particular picture was taken in front of the main falls (there are several smaller waterfalls as well) as we were hiking around exploring the park. I would have been 24 at the time and in my 2nd year of law school, which explains why I look so cool (note the sarcasm). The humidity was doing incredible things to my hair, which is actually straight in real life, so my sister had the brilliant idea to take a picture of me wearing her aviator sunglasses looking too cool for it all. Kind of an "I'm too sexy for these falls, too sexy for these falls..." kind of deal. And for those of you for whom this means anything at all, that is a genuine Members Only jacket that I'm wearing - another piece of irnoic humor. So there I was, trying to pose, and of course all I can do is laugh, which explains the very strange expression on my face, and my sister was cracking up and all the Brazilians/Argentines/various international tourists were looking at us like we were insane, and my parents looked like they wanted to jump into the falls b/c they were so over having two crazy women as daughters. But we had fun. And I certainly never expected to be posting the photo on a blog, which I guess makes this game a success.

Here are four new people I am tagging to play the game (and I'm trying to mix it up here):

Talana
Jessica
Meggzzi
Heidi

All four of these awesome cysters are kick-ass women who have great blogs, so I just thought I'd help them out by giving them a chance to share random pictures ;)

On a more somber note, there's a plane outside my apartment that just washed up in Battery Park city, literally a block from my home now. It's crazy, and I'm so thankful that everyone was relatively unhurt. Major kudos to the amazing NY rescue and emergency response teams for awesome work with this one.

My Body, My Self

I can already tell that this post is going to be a little ramble-ish, so readers be warned. I think I'm just feeling the need to blow off a little post-hospital steam and try to make sense of some of the changes 2009 seems to bringing with it. It's only two weeks into the year and I already have a really deep sense that this is a new era. But I promise I'll stop myself if I start to sound too much like an outdated textbook from Philosophy of Illness 101. And by the way they should totally start offering that as a course in college.

I think most of what I'm feeling right now can be explained as a weird type of conversation between my body and some other side of myself - maybe my spirit or my mind or my soul. Call it what you like, but I guess as a "sick" person I have always had some sort of distinction in my head between the two. My body, I always assumed on some level, was a shell for whatever else might compose the larger, more real me. Not only a shell, mind you, but an inadequate one: constantly frought with questions and concerns and random illnesses that served only to get in the way of my "true" self, which of course is always happy, full of energy, excited to tackle any task, loving and giving beyond measure, and basically more or less perfect. Obviously.

Lately I've been starting to reevaluate that concept. Not entirely; I still do see a distinction between my body and my spirit, and that distinction has in some ways only grown wider as my body has begun to succumb to an illness against which it simply has no chance (sorry, Dr. Beall, I'm calling it like I see it on this one). But maybe the distinction isn't as clear-cut as I once believed. Maybe my body, instead of being some unfortunate shell unprepared to deal with the stresses of housing such a radiant being inside it, is actually a pretty tough cookie deserving of a little praise in its (her?) own right. After all, this body has taken me 27 years into the abyss, for lack of a better image, and more days have been good than bad by a long shot. Maybe, then, my body is as much a part of my "true" self -- as much of a giver, a fighter, and a survivor -- as any other part of me. And then of course, maybe that means that the rest of me -- that amazing wonder of a woman that I always saw as so unfairly held back -- well, maybe she isn't exactly the inhuman ideal I've always so considered her.

In other words, maybe both parts of me are wonderful. And both parts flawed. And most importantly, both parts are the real me, together.

The rationale behind this not-so-radical realization is actually my job. Yep, I'm blogging about work. Surprised? It seems to be all I talk about lately, or at least it is now that I'm done complaining about hospital food. But honestly, it's just such a big deal for me. And I am really struggling with finding that delicate mind (spirit)/body balance. It's just not something I'm really grasping right now.

I'm 27. I worked REALLY hard to get where I am. I love my job. I work with amazing people. I feel challenged. I feel fulfilled. And I know these things are important. I KNOW that. But are they important enough to risk my health? Risk infection after infection and scar tissue build up that can ultimately only mean one thing? And if not, then where does the compromise begin? How do you negotiate a plan that neither you, nor your work, nor your doctor is ever going to be completely satisfied with, because all of you want and need different things? What's the jumping off point?

I'm not sure how to look my parents in the eye and tell them that I, their youngest daughter for whom they would (and have) sacrifice so much, is willing to potentially jeopardize the amount of time we have left together in order to feel more personally fulfilled. I don't know how to explain to people that it's worth it for me to face being cut in half and put back together again years earlier than I otherwise would have just so that I can continue to show up for work in the morning. I don't know how to tell my work that even though I seem fine and always accept each assignment with an enthusiastic nod and an excited smile, this workload is, literally, killing me. I don't know how to make a group of wonderful but very high-achieving attorneys understand that although I return from each new infection and round of IVs with the same spring in my step, my lungs are irreversibily damaged. I don't know how to say these things out loud, maybe because I don't know yet how to say them fully to myself.

I keep coming back to that way-overused line from Steel Magnolias: "I would rather have 30 minutes of wonderful than a lifetime of nothing special." But of course it's not nearly that simple. Or that cute.

I want to be happy without being selfish. I want to be active without being irresponsible. I want to remain as healthy as I can while still living my life. I want to look both parts of myself -- my body and my spirit -- straight in the eye and tell them I understand where they're coming from and that I care.

And that I'm trying.

Enough Said

Because Life is About More Than Just CF (Even if My Blog Isn't)

Sampson (aka the number one reason I want out)...feel free to gush b/c believe me, I KNOW he's adorable:

Updates

1) My port is working beautifully and no more hand IV. I was right - it wasn't accessed correctly. After the TPA failed I started pitching a fit (politely, of course) b/c they were talking removal. The thing is, it was flushing but not giving a draw, so I knew it wasn't "clogged." I ended up suggesting they try again with a 19 gauge needle instead of 21 b/c I had a theory that the needle was too big for the access area on an arm port, which is smaller. Turns out I'm a little bit of a medical/engineering genius if I do say so myself. Who'd have thought?

2) Last night I asked for cough medicine and was presented with...codeine. Honestly. Codeine for a cough? But I was desperate so I took it. An hour later I was lying semi-comatose in bed watching Larry King interview a Scientologist about John Travolta's son. This led me to telephone my poor friend at 1 am to tell her the "hilarious" story about how Larry King had mistook the scientologist's use of the word "thetan" (meaning soul, more or less) for the word "satan" and had asked some question about why it was comforting to believe satan lives on after the body is dead. Obviously the fact that I found this so funny and woke my friend up to tell her about it, even while drugged, cancels out any claim I may have to call myself a genius from the port situation. Sheesh.

3) Today it finally happened: my doctor came in this morning and suggested I need to look into disability. Yikes. But actually I'm really proud of myself. I told her I was already considering a reduced schedule/flex time option and that I was working to come up with a plan I felt comfortable with before presenting the idea to my firm. I asked for her help in crafting said plan. And then I told her in no uncertain terms that I am 27, I love my job, and I am not going to stop working. Not yet, maybe not ever. I know my job doesn't define me, and I DON'T want to look back with regrets that I didn't do enough for my health. But at the same time I don't want to look back with regrets over my LIFE either. So I want a balance, a compromise, and if that means that neither my work nor my doctor is going to be 100% satisfied with my plan, then so be it. I trust and love my doctor, so I was able to ell her that calmly and with some degree of self-control (i.e., without bursting into tears). It actually went over well and she said she would support me in making a plan that I feel comfortable with even though her "official" recommendation is disability. I laughed and told her there was no way I could be a lawyer for less than the time it took me to get through law SCHOOL.

I knew we had made a total breakthrough when she looked at me and said "I do understand how much it means to you, and if you're saying that you understand that it might speed your road to transplant or infection but still feel it's worth it for your quality of life, then I am totally behind your decision." So great to hear those words, even though I do wish I could have avoided the conversation altogether. I guess no one wants to be told they need to slow down, but having a doctor willing to understand that health is not the only factor in life (and CF not the only factor in health, for that matter) makes such a difference. My family gets it too. I'm grateful and a little relieved, now that the dust has settled and I've had a good cry.

4) Hospital food is terrible. Enough said.

Hope everyone else is having a happy and healthy week. I had to cancel a drink date with friends tonight, so everyone have their favorite cocktail in my honor.

View of My Arm (Needle-Phobes be Warned)

How do you get the best arms on the block for 2009? Obviously I'm not the one to ask, but here are a couple of steps you might want to AVOID:

Step 1) Having a hard-to-access (though otherwise awesome) arm port.
Step 2) Overusing said arm port to the point where it goes on strike. (I'm convinced this is what happened - the doctors however seem to think it's a clot. Clot, strike: no matter what you call it, the result is the same.)
Step 3) Injecting TPA into the clogged/overworked port in order to bribe it into functioning. Note that this apparently requires that a weird contraption with two syringes be left dangling from the access site for an hour.
Step 4) Allowing the insertation of an "emergency" peripheral IV in your hand/wrist for use while the TPA (which is just a fancy name for liquid plumber for ports) does its job.

If you avoid these 4 simple steps, you should be able to get through the year without your arm looking like this:



I'm actually pretty amused by the whole thing, and it definitely looks worse than it is. Guess no visit to the hospital ever goes entirely according to plan.

Checking In

Nothing like starting out the new year with a bang, I guess. At least now I'll be in top form for my move next week, the inauguration the week after (I'm going down to DC), and my sister's 30th bday the first week of February. Honestly, with all that coming up I'm having a hard time mustering my typical amount of self-pity over any of this.

I'm sure I'll be udating much more frequently for the next few days from the halls of Hotel Presbyterian.

Recap

So I thought I'd take a cue from everyone else and write a post dedicated to the new year. On a total sidenote -- and hopefully without sounding *too* cliche -- I am honestly STUNNED to think that it is 2009. That just seems like such a high number to me. Probably because I've always measured my life by graduation dates, and those are all behind me now. Unless of course I can come up with yet another degree to lust after. "Professional student" does have sort of a nice ring to it, right?

Anyway, here are some of the major CF milestones that defined my year. Feel free to make this interactive and add some of your own to the list. Good, bad, ugly...let's hear it all in the spirit of a big collective fuck you to this disease from all of us who survived another year.

• A year ago today, tx wasn't even on my radar. That is totally unbelievable to me, but it's true. January 2008 was the first time my doctor brought up the possibility of me being evaluated. Total sucker punch at the time, but I'm honestly grateful now for her foresight. Still, that has to be one of the hardest milestones I've ever reached.
  
• February/March: First ever partial airway collapse (result of prolonged pnuemonia) and subsequent first ever bronchoscopy. The best thing to come out of this was the series of totally drugged emails I sent from the recovery room as I came off the anesthesia, courtesy of my mother smuggling in my blackberry. I emailed friends, I emailed family, and yes - I emailed work.
  
• In April I got my appendix out. Ironically this was the only hospital admission I had this entire year, despite being on IVs a total of 5 times for 3-4 weeks each.
  
• May was my first meeting with the tx team. They apparently thought I was sane enough to go through the rest of the eval after that initial screening. Go figure.
  
• July/August: Faced -- and survived -- the actual tx evaluation. Honestly I feel like this was SUCH an accomplishment, although I know the eval is really just a drop in the bucket. But it was my drop, my bucket, and it felt huge to me.
  
• Sampson joined my family in October! This was so the best thing that happened to me this year. He has a life expectancy of 12-14 years, meaning that he and I should be together until I'm about 40. You do the math, but I'm pretty sure this means CF is gonna have to wait around on me for a while.
  
• I turned 27 on the 27th of November (also happened to be Thanksgiving), making me officially 9 years older than anyone ever thought I would be.
  
• December: Wore O2 in public for the first time on an airplane. Surprisingly, the world did not stop turning and I actually didn't feel that self-conscious. The only really annoying thing ended up being that they had taped the canula along the top of the plane somehow, so I couldn't really move my head around much. Maybe this was just United's way of telling me to work on my posture?
  

In 2008, I had three pnuemonias and two other major infections, saw my CF doctor over 20 times, started the AzLi expanded access program, confirmed that I am not deaf from overusing tobra, also confirmed that I am not diabetic from overusing prednisone, and gained a total of 15 pounds. I also worked really hard at a job I love, bought my first apartment, made some really amazing friends and had tons of fun with old ones, saw several friends get married, sent baby gifts to old college roommates, watched my sister design and launch a fashion line almost single-handedly, celebrated my mother's retirement, and took my dad to his first (and last) game at the old Yankee stadium. And through all that I think I also found time to grow a little as a person, whatever that means. I can honestly say it was a great year, although I can't say it was an easy one. I guess the two don't always go hand in hand anyway.

Wishing everyone a happy and healthy 2009.