Mush, Mush, and More Mush

So okay, I know I haven't tackled this thing in over a week, but in my defense that's been mostly to spare whoever reads this blog from slipping into a boredom-induced coma. My brain has been pretty much mush since starting IVs last Wednesday and it just didn't seem fair to drag everyone else down with me. Because let's face it, most of us have enough to worry about without adding Irritable Blog Syndrome to the list (and for anyone who cares, yes, I did in fact fight with myself over that terrible pun, but what can I say...my corny side is WAAY stronger than the rest of me). And then I realized that if any group of readers is likely to forgive my abx haze, it's probably you guys. In other words, bring on the mush.

A couple of updates from last time:

1) As predicted, I'm back on the needle and under the gun. Basically I was feeling like utter shite and getting short of breath doing those basic life things that we all take for granted 90% of the time, so I knew it was time. Amazing how IVs start to look real good real fast when you can't make it to the bathroom without stopping for air. So anyway, we're doing a longer course this time -- probably around 6 weeks -- to hopefully wipe out whatever has been causing these constant infections. At the very least I'm looking forward to 6 weeks when I absolutely cannot feel as bad as I have been in between IV rounds. It's so nice to be able to breathe! Or at least, sort of breathe anyway.

2) That last sentence kind of brings me to the next point, which is that I'm on the verge of becoming a full (or near full) time oxygen junky. My sats are just too low most of the time, staying in the very low 90s even when I'm healthy and resting. At my last tx appt my tx pulm told me I should be using the O2 "liberally with any activity", which I choose to interpret as whenever I exercise plus anytime beyond that when I both need it and it makes logical sense to have it on. In other words, I'll be bringing it to work to use in my office, but probably not to any meetings with partners anytime soon. And if I start to really need it 24/7, then I'll reevaluate when the time comes. But I have all sorts of fun ways to use the stuff now since my insurance paid for a home concentrator with fill system, three different sized tanks (think large, small, and extra small), and a portable Sequal concentrator for travel/office use. I know what a battle home O2 is for some insurance COs and believe me, I'm counting my blessings on this one.

3) I'm angry at CF right now. Not an all the time, pervasive, "can't see how much I have b/c I'm so focused on the negative" type of anger. And not a cry myself to sleep kind of anger either. It's just that I'm so frustrated right now b/c I can't stay healthy, even though I'm trying, and I haven't yet found a way to reconcile the way I want to live to my life with some of the choices that I'm having to make, even though I'm trying there too. It makes me mad to wake up in the morning already feeling tired, and then to drag myself out of bed only to find that it takes me an extra half-hour to get ready b/c I have to keep stopping just to catch my breath. It makes me upset to be trying to work and instead find my mind consumed with whether or not I can breathe, or what my resting heartrate is at just that moment. And I know a large part of this is me, and not really just the disease -- I know other people who have issues just the same or worse or even just different than me who still manage to get everything done -- but right now it's just hard.

Hopefully that last point doesn't come off as too whiney b/c that's not really the point. It's just that lately I find myself feeling these moments of just heartbreaking sadness or confusion or loss or frustration, and then everyone tells me how well I'm doing with it all and I want to just respond with "yeah, but it's HARD. It's so damn hard and there are so many of us -- 30,000 patients and countless more family and lovers and friends -- who are all trying to live with this sadness, trying to survive the bad moments and get back to the business of being human, and it's HARD. So thanks for the sentiment and the observation that you think I'm amazing, but honestly I'd trade all that inspirational BS just to be able to get up, walk my dog, eat a meal without thinking about the calories or the fat content, and get on with my day." And I guess maybe that's the rawest, most honest reason that I finally decided I had to write, mush or no mush...because in the long run the only people who can really get that need are others who feel it, and I'm so grateful to have people like that available to read these rants of mine.

So that's the update. The good news being that I feel so much better, and I actually had a great weekend with lots of friends and family and even an Opera at the Met (I know, super spoiled huh?). But it's undeniable that this disease has been affecting my life in totally news ways these past years, and I guess it would be unrealistic for me NOT to react to that, at least a little. Maybe even unhealthy. So I'll take the good news, and deal with the bad, and in the meantime I guess I'll just try and fight the inevitable mushiness that comes with middle ground. At least for the next five weeks or so.

Enough for Now

Okay, so I have lots of pictures. The inauguration, my sister's 30th bday, some random funny shots of my dog...I'll be uploading at least a few from each in the next few days or so. I know this blog is (mostly) about CF, but we all need a little break sometimes, right?

In other news, I'm sick again. Blah. I emailed my doctor about it today and we're going to touch base on Wednesday, but the plan is most likely going to include a 4-6 week course of IVs. We really, really need to find a way to stem the tide of these infections a little, and she thinks this might do the trick. No guarantees obviously -- this is CF we're talking about, after all -- but it's worth a shot. At this point I'll try pretty much anything. I just want to feel good and stay that way for a while!

Anyway, my deep thoughts for the moment are as follows:

1. It could be a LOT worse - I'm honestly feeling pretty lucky right now that I have access to this sort of care and have such a great doctor who I trust more than I can say. CF sucks either way, but knowing you have an amazing team behind you and the resources to get the care you need goes such a long way.
2. I get to do this all as an outpatient (I think). Yay!
3. I am SOOOO excited to feel better. Enough said.
4. By the time I get off IVs it should be just about time to break out the shorter sleeves and lighter-weight jackets. This timing is perfect for an arm-port girl like myself ;)
5. My mother is actually in town this week to attend the Westminster Dog Show (a friend of hers has a dog showing) and then to take my sister and I to the Opera. This is either a coincidence or part of a master plan that's greater than my own, but either way I couldn't be more grateful!

I honestly can't wait to devote a little space on this blog to talking about something other than pseudomonas. I can't wait to walk my dog and not have to count the steps back to my apartment. I can't wait to start exercising again. I can't wait to go out with friends and have energy at the end of the evening. I can't wait to go to work and be able to stride down the halls with my "confident lawyer walk" again instead of just concentrating on looking normal enough to pass as semi-healthy. I can't wait to actually be excited about meals. And most of all, I can't wait for the end of winter and some fun weather to enjoy the new health that I *know* I'm going to have after all this hard work.

On another personal note, my mom and I are taking my sister to Canyon Ranch in Massachusetts later this year as part of her bday gift. My sister and I (and maybe a girlfriend of mine, depending on how it works out) are also planning on a trip to Japan in the upcoming year. Both of these sound unbelievable to me...thinking that I might be able to do these trips and feel healthy enough to truly savor them actually makes me want to cry. I want pictures of me enjoying myself that don't make me wince later remembering how hard it was to breathe behind the smile.

So yeah, the IV part kind of sucks. But I have a lot of hope for this right now. And for now, despite everything else, that feels like enough.

Fly Away Little Bird

Just a note to for those who knew her, or those who never had the pleasure...

Jenn, a fellow CFer waiting for a double-lung and liver transplant up in Mass., passed away yesterday morning after an unexpected decline. She was a very cool spirit whose kindness and generosity is demonstrated in her final wish to have her own body donated to CF research. I think it says so much that a young woman in her late 20s would be so gracious as to think of others when planning her last requests. Reading Jenn's story, and knowing her these past months, I can only say that she was an inspiration to all of us considering transplant -- she fought through many complications and uncertainties without ever allowing that struggle to eclipse her own light. So fly away, rest peacefully, and breathe easy friend. And whatever comes next, I hope your journey is a good one.

Please keep her family and loved ones in your thoughts right now.

Keep On Keeping On

So today was my first follow-up with the transplant team since the end of my evaluation in August 2008. I wasn't sure what to expect, but I followed their instructions to the letter: I invited a support person to come with me, arrived 30 minutes ahead of time to complete any paperwork, and wrote down all my questions so I would remember to ask. Amazing how much mental prep goes into these "routine" visits. Anyway, I was pretty on the ball, but even so I was definitely nervous. It's funny - I've been in and out of this hospital every month at least for a few years, but ever since I started visiting with the tx team it's just taken on a whole new meaning. I don't even really know what I mean by that. I guess just that this is now the place where I've cast my lot - I am choosing to make this hospital part of the biggest medical experience of my life. I didn't have to do that -- there were plenty of other places I could have gone -- but I chose Columbia Pres. and now that is truly, more than ever, "my hospital." I think I would feel very strange leaving it now. So yeah, walking in there today was both comforting and a little overwhelming.

The meeting itself was pretty much what I expected. I filled out a form to update the team on any changes or hospitalizations since my last visit. Then I went back and met with the tx coordinator. She and I discussed what tests had been done, what still needs to be done, and what the listing process will look like. At one point she had to leave the room to take a page and she handed me my eval sheet and told me I could look at it. So funny - it was a narrative of my complete medical history, including comments from doctors and other random facts. It talked about my gene mutations, my hospitalization history, my compliance with meds. Parts of it were funny (like the quote "she denies any pregnancies" - as though I might have hidden the truth), and parts of it were more sad ("she had a relatively healthy childhood with minimal CF-related infection until age 14, at which point she began progressive decline"). Parts were just interesting. As a whole, I was pretty fascinated both that the document existed and that they let me see it.

Moving on, the tx coordinator told me a few really good things. First, she told me that my case had been presented and accepted, meaning that if I complete the testing she would be authorized to list me tomorrow, if needed. That was awesome news, and something that just sort of took a weight off to hear. Something about the whole "acceptance" process seems weird to me - I'm glad to know I "passed" I guess. Anyway, she also said that I should start coming to the patient education group, and gave me a schedule for that. It's presentations by the social workers, nutritionists, surgeons, and other members of the team on pre- and post-tx living, as well as on the surgery itself. So I guess I should start making some time for that in my schedule, since I have SO much free time already (haha).

My tx pulmonologist came next, and he and I chatted about my recent infection history, which has been...um...intense to say the least. Basically he said that even though my PFTs are still in the high range for listing, it would be worth completing everything. He seemed generally nervous given how much I've been sick lately. I don't blame him - I'm nervous about that too. He is also unbelievably kind and wonderful to talk to. I am so blessed to have incredible doctors. But the plan as of now is to wait, but to keep a closer eye on things. I have to see him again in three months, and I get the feeling that if we can't say at that point that the recent infection blitz was just a one-time fluke, we may move forward. I dunno - speculation on my part there. But it was pretty much what I expected.

Finally I met with the tx surgeon, who gave me the whole rundown on what to expect from tx - the complications, the possible outcomes, the statistics, etc. It wasn't news to me for the most part, so I was able to stay pretty calm. I do think that there's a part of this whole process that is kind of in your face (for lack of a better term) on purpose - they tell you the worst possible outcomes b/c they want to weed out the patients who can't handle those possibilities. And maybe that makes sense, but of course it's always scary having people talk about tx and suddenly realizing that those are YOUR lungs they're talking about removing, YOUR chest that might sit open for 6-8 hours, YOUR life that will hang in the balance. It's oddly clinical in the moment, but sitting here processing it now I kind of get shivers. And frankly I think that's good, because I think it means that I'm feeling this as real and not just removing myself from the process. Or at least that's what I tell myself now.

I will say that the events of this week made this appt all the more surreal. Knowing that a few states away Jenn struggles to hold on to life, while down south Garran takes another breath with his new lungs - it was all very intense. They are both so brave, and such role models. Both of them have fought so hard to live, to get the new life they both deserve so much. And it saddens me to no end that one of them might never get that chance, but it also makes me all the more determined to pursue this process. I don't know when tx will come for me -- I hope it's not for a while yet even despite some of the signs -- but I do know I WANT it. I want it and I will fight for it. And I hope that if I'm lucky enough to get it, I will be wise enough to cherish it.

All good thoughts and positive energy to those who are fighting tonight. Your courage and strength is beyond this tired New Yorker's humble understanding.

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.