Life's Deep Questions

Okay, so since I got Sampson I've had like a million of my friends (and even random people in dog parks) comment on how my puppy looks like an Ewok. I'm kinda embarrased to admit that I had to go online to look up what they were talking about, so I went and found a picture. I'll let you guys be the judge here....

Poor Sampson. At least we know he can get a job doing cameo appearances at Sci-Fi conventions if Wall St. continues to crash!

Roller Coaster Ride

Lately I've been feeling like a passenger on some sort of really creepy roller coaster. Seriously, CF is always unpredictable, and I think people with chronic illness learn to manage expectations a little differently than most healthy people - if only because we know that things can (and often do) turn on a dime health-wise. We learn that things can go from good to bad -- or bad to good -- in a matter of weeks, days, hours, or sometimes even minutes or seconds. And this sort of up and down, peaks and valleys kind of lifestyle is a little unsettling, especially because it intensifies as CF progresses. It's a weird sensation to feel fine one day and find yourself admitted to the hospital the next. And it's even weirder to look around and realize that this sort of strangeness has suddenly become routine.

The past two years of my life with CF have been totally erratic. One week I'm at baseline, the next I'm suddenly fighting off exacerbations the like of which I would never have imagined just a few years ago. Even my baseline itself has been up and down, to the point where I've come to expect anywhere within about a 10 point range for PFTs, and that's when I'm feeling "healthy." My sats go from 88 up to 98, sometimes literally week to week. Heartrate can be anywhere from 130 to the low 60s. My weight has fluctuated from 113 (scary, I know) to 135 (close to the goal weight my tx team identified). It's enough to make even the most experienced roller coaster fan reach for the emergency stop button.

And that's just the physical stuff: emotionally the highs and lows have been even more intense. I've been told I need to be evaluated for transplant while simultaneously I hear stories about CFers with PFTs well below mine who have avoided the list for 10 years or more. I'm told that my body is failing yet encouraged to keep working and pushing myself. There's a sense in the air that the damage is beyond my control, but sometimes I see glimmers of hope - that maybe a new drug or more intense treatments or exercise might make all the difference. I'm torn between the desire to be as normal as possible and live my life (intense work/social schedule and all) and the desire to dedicate more and more time to health concerns so that I can extend that life as long as possible. I want to take all the steps to be ready for transplant, but I don't want to expect the worst all the time. The balance between survival and actually living is constantly on my mind.

I know this seems like a kind of depressing post, but the reality is that all of this is triggered by GOOD news. Awesome news, actually. I went to clinic yesterday and blew a 44% for my FEV1 - up from 37% just a couple weeks ago. My sats went from 93 and 130 to 96 and 72. I didn't do IVs in the interim; this is all from cipro, prednisone, and a whole lot of luck and really hard work.

Am I happy? Absolutely. Happy and extraordinarily grateful. Visits like yesterday make me realize that despite some rather grim predictions, there's actually some real life left in these lungs of mine. Which is such an awesome feeling, because even though it might all change tomorrow, right now I can just enjoy the high. In the meantime, I'm writing 6 flags a letter - I think a new ride called "The Cystic" could really raise their ratings!

Happy Birthday to Amy!

Hi there. Nothing new to report, just wanted to take a second to wish a very special cystic a very happy birthday! So here's a message from me and Sammy...


Close up of the sign (it says: Happy B-Day Amy! xo, Piper and Sampson)


What Sammy really thinks of my job (as evidenced by his feelings towards the legal pad)

Cysticish Choices

Okay, so I'm jumping on the blogging about work bandwagon because it's an issue that just keeps coming up for me lately. There are a couple of reasons for this, but mostly it's because I chose a job that expects junior associates to be available to the firm more or less on demand, 24/7. Not that my firm is particularly unreasonable (I honestly think it's better about this aspect of the job than a lot of NYC firms), but honestly the job is very demanding, and it's so tough (and ridiculous) to be constantly worried about not keeping up at 27!!

Basically the situation is this: there is one particular case at my firm that has a lot of "emergencies" in the sense that the work isn't very consistent, but when there is an assignment it tends to be really time sensitive. I am staffed on this case, as are most of the litigators in my associate class. I am also on another case that has fairly consistent hours every single day and where nothing is particularly time sensitive. This second case is a very small team and makes up the majority of my work for the firm.

The problem is, every time the "emergency" case rears its head (which is about once every few weeks), the entire team has to work ridiculous hours in order to meet the deadline. As in full time, 7 days a week, for a period of anywhere from 2 weeks to 3 months. The more senior attorneys on the case are very understanding about my CF, but at the same time I feel like I can't demand too much leeway since my working less only means that my colleagues have to work more. Plus there's the fact that I don't WANT to ask for too many exceptions. Besides the fact that we're in the middle of a recession and this isn't the time to not pull my own weight, there's also the more personal issue for me: I went through 7 years of college and grad school to get where I am, I worked my ass off to get through an Ivy League law school and then to get my job at a competitive firm, and I probably sacrificed my health more than I should have. I simply don't want to have worked so hard and not to reap some of the rewards. And yes, I know 24/7 working hours aren't what normal people would call a "reward", but I'm not a normal person...I'm a lawyer ;) Seriously, I just want to be a productive, valued, and fully-involved member of the team!

Every single time this case comes up I end up sick. It doesn't take a rocket scientist to make the connection. Normal people get sick working all the time, so my body obviously CANNOT handle it. And I am well aware that health is the primary goal - that any other sacrifice should pale in the face of living long and living healthy.

"Should," however, doesn't always mean "does."

I feel like CF is robbing me of something I dreamed of and worked towards all my life. I feel like I'll never be able to be effective in a courtroom because I can't breath, I can't talk in complete sentences without coughing and/or pausing for breath. I feel like no one wants an associate who gets sick every other week. And I feel like even when I make the smart choice, even when I set limits and really stick to them, I still wind up getting sick. I'm not a "what's the point" kind of girl. I hate that question. But at the same time I feel like CF has given me just enough of a taste of what my life could be, has let me live just enough of a "normal" life to know what I'm missing, and now it's trying to take it all back. Not positive thinking, I know, and I will snap out of it and do the right thing for my health. But I want to allow myself just one chance to say how much it SUCKS before I do.

And now I'm off to go cuddle with my puppy, who by the way has proven himself the ULTIMATE in CF-friendly dogs. Not only is he hypoallergenic and more than happy to romp around in the dog run while I catch my breath on a bench, but his new favorite thing is to sleep on my lap while I do the Vest! What a sweetie.

A New Addition

No, not that kind, but close!

Meet Sampson - the newest addition to my family. He's a 4-month old Yorkie/Shihtzu mixed breed, and absolutely adorabale. Basically the mellowest, already-housebroken little guy you'll ever meet. And did I mention how cute he is?

Prednisone

So a lot of you are probably familiar with a steroid called prednisone (and if not, check this out). Basically, this is a strong anti-inflammatory drug that almost everyone is on after transplant. A lot of CFers also use the drug in short "bursts" to treat exacerbations, infections, or just the asthma component of CF. Many of us love this drug because, unlike antibiotics, it has the almost immediate effect of loosening tightness and reducing airway irritation. For me it is pretty much a go-to drug when things start to slide downhill because it's the only thing that helps me feel good enough to do the other things I need to do in order to fight off whatever else is wrong.

Sounds awesome, right?

Well, I'm basically on week three of the drug right now. I did one burst starting in Mid-Sept. (3 days at 40 mg, 3 days at 3o mg, etc) and then my HR was still a little high so we started a second burst. I think this one has more or less helped me through whatever infection might have been threatening to take root (I also switched from TOBI to AzLi and added oral cipro), but that doesn't mean it's been fun. I still have three days of 2 pills to go and then three days at 1 pill, so another 6 days altogether. Ugh.

I am literally hungry ALL the time. This is actually a good thing, because I could use the weight gain from the extra calories, but it's still annoying. I see food and want to attack it, and if I go more than about an hour without eating I feel starved. I even wake up in the middle of the night hungry. On top of all that I'm of course still working, so I'm basically sitting in my office all day inhaling cookies, peanut butter, chips, and candy bars. Wow, that's a healthy diet. On top of that the prednisone makes me a little hyper and it pushes up your blood sugar levels, so I'm basically on a constant sugar high (made worse by all the eating). It's pretty amusing actually...I've definitely burst out laughing a couple of times when I look down and see that my desk looks like a food graveyard. Good lord.

Don't get me wrong, I am so thankful to be feeling good and to have gotten everything under control without IVs. I'm also really lucky, in the sense that Prednisone doesn't cause me any of the serious mood swings some people experience. A little hyperactivity is nothing compared to feeling grumpy or sad all the time. But still, I'll be super glad when it's all over. Maybe then I'll be able to actually stop eating BEFORE I start to feel ill from overstuffing!

6 Quirky Things

Okay fine, since I've now been technically tagged by both Christy AND Amy, I'll play along. Here are 6 quirky (or at least pretty random) facts about me:

1) I have owned, in my 26 years, 13 pets - 5 dogs, 4 cats, 3 horses, and 1 very random run-in with a box turtle named Toby (NOT Tobi). Of these, only three of them have been female. What can I say, I love my boys ;)

2) In college I did a study abroad program at Oxford University in England. My first night there my nebulizer caught fire. I didn't even try to bring my Vest.

3) My random obsession is probably colored lights. I love things that sparkle or light up, and I cannot get enough of shiny things. I have old friends who tease me about my "inner raccoon" because I am so drawn to anything that catches light. I would probably do really really well as a Vegas cocktail waitress if I ever leave the law firm. That or working somewhere with lots of stained glass.

4) I grew up listening to Marlo Thomas and "Free to Be...You and Me." I still know most of the words to a lot of the songs: Parents are People, William Wants a Doll, and of course the theme.

5) Dogs (and most animals really) LOVE me. I don't honestly know why. It could be because I really like them, or it could be because I'm basically a living salt lick. Whatever the reason, they literally stop in the street and try to jump up on me. I don't mind.

6) I decided I wanted to be a lawyer at around age 6 and pretty much never questioned myself again. There was a brief period in college when I thought I wanted to be an English prof, though, so I actually applied to some law schools jointly with PhD programs. My parents saved me from that mistake just in time...I would have like 6 years of school left!

Okay, that's it. If you read this, consider yourself "tagged."