Simply put, I'm afraid.

Now I've been writing, and writing, and re-writing all about that fear, and how it feels, how it tastes, what it looks like, where in my mind it has taken residence, and what it is exactly that I'm afraid of.

But that's a whole lot of fear and not a lot of room for anything else.

And when I focus on my fears, I forget, sometimes, that I've had CF my entire life.

Twenty-four years of effort, and work, and hospital stays and surgeries and procedures, and complications, and I've gotten through every last bit of it.

I'm still breathing, albeit poorly, I'm still able to walk, I'm not on constant oxygen, and if I do end up on the operating table with a new set of lungs, then it will be a blessing unlike anything I've ever experienced. I'll be able to breathe.

And that's really nothing to be afraid of.

pros & cons;

A pro for a lung transplant: I could run a marathon.

A con: I'd have to actually train for said marathon.

acceptance;;

My head is a lead balloon.

That's the colistimethate sodium talking, drug one of five in my medicinal cocktail provided thoughtfully for me, patient #18561596etcetc, by the doctors at Tampa General Hospital.

It wasn't easier the second time around, like I had originally thought. I was under the impression that life altering news is easier to take after being dealt the blow once already. And, per usual, I was wrong. Wrong wrong wrong.

The transfer of care to Florida from Massachusetts has been a bureaucratic nightmare. I am covered head to toe in insurance bullshit. I've got stacks of contradictory paperwork, physicians who may or may not take my insurance, but have been assigned to me regardless, only to find out that those physicians can't or won't see me, but I can't sign up for a NEW physician for three months. But to see a specialist, I must have a new physician. Now. But really, yesterday would have been better.

It's enough to make a girl have to stop and catch her breath.

And that leads me to conundrum numero dos:

My lung function is at an all-time record low - 26%. My weight, too, is lower than ever at 99.7 lbs.

Weight loss coincides with a decrease in lung function, so, easy - gain weight, improve breathing.

To gain the weight, I need to remove my gallbladder.

To remove my gallbladder, I need to .... improve my lung function! Or face being stuck on a ventilator post surgery with lungs that can't recover from the trauma of being put under anesthesia!

It's a textbook catch-22, and I can't seem to figure out where to start. Neither can my doctors. So not only was I admitted, but they threw out the ugliest phrase I know.

Lung transplant.

I wasn't ready for it three years ago at twenty, and I wasn't ready for it yesterday, despite my belief that the second time around would be easier.

It was not.

But despite my propensity for melodramatic blog posts, I'm not convinced I'm there yet. It took a minute for my mind to adjust to the shock, and digest that mouthful yet again, but once the doctor left the room, and the tears slowed down, on turned a light bulb.

The best kind of light bulb: hope. Or maybe denial, I'm not sure...

I'm just not convinced my lungs can't recover, I'd like to believe I could survive the gallbladder surgery, and I'd really like to believe that once it's out, my weight will go up, my lung function will increase, and I'll be known as The Girl Who Avoided A Lung Transplant Twice.

Yet hope is at times contradictory with acceptance. Acceptance that my lungs are fragile, and it might be time to consider the next step in the disease process; out with the old, in with the new. But yet, acceptance is a fine line away from admitting defeat and slowly becoming okay with that. I want to accept what CF throws my way, but not give up in the process.

And then, today, another thought came to mind, one I have long forgotten. In yoga, there's the idea that the present moment is the only moment; that our minds focus on the past, or the future, on ideas, fears, past experiences, or future anxieties as a distraction to being present. So where does that put this? Do I take this hospital admission at face value? Focusing solely on improving my lung function day by day, and dealing with a transplant if and when it unfolds?

Ideally, yes. But a huge weakness of mine is being 'in the moment' and staying present. I fret, I worry, I over-analyze, I bring up past events and mull over them, I think about the future and project what will/won't happen.

Yet, I'd like to try to accept that right now, at this moment, I am not a transplant patient, I'm merely in the hospital undergoing a routine admission. I'll try to take it day by day, hour by hour if I have to, and not allow the fear of what may or may not happen cripple my mindset and overwhelm my ability to get well.

I would also like to remember that whatever does end up happening is okay. An increase in lung function, a decrease, a gallbladder removal, or a lung transplant. The goal for me isn't to live in fear of the progression of this disease, but to live with CF, presently.

....That said, I really would enjoy a full recovery and a successful surgery and an increase in appetite and weight, and for my pants to fit again, and most of all, most of all, to put the words 'lung' and 'transplant' on separate back burners, and keep them there for as long as possible.

Is it wishful thinking?
Fuck yeah.

Do I care?
Fuck no.

Sometimes I wonder if our 'golden' days were those hazy, summer days that melted into the evening, that ended in the early morning, outside our local neighborhood Starbucks.

I wonder if we knew then how great those nights were. Days that blended into each other, no realization that one day, not far from then, every single one of us would go our separate ways, and that group, that indelible group, the group that bonded over uno games and late night caffeine, would never reconnect in the same way after that summer ended.

I think, sometimes, that we had everything we wanted. Friends, love, small town coziness and big town dreams.

Before break-ups, and disappointments, before responsibility hit us across our faces, and before we were let down, and our hearts were broken.

And it faded away as quickly as it appeared, and now we're scattered, and the friendships have changed, the love has come and gone, and Starbucks, well, I still drink it fondly.

I think I know which direction I want to go.
And even as I write this, life throws a few other kinks into the mix, and my ideas fly out the window and settle somewhere in the breeze.

I may get to keep my lungs, but I'll lose my gallbladder. The sooner the better, as a ten pound weight loss is impeding on my ability to breathe.

I started class, and am becoming increasingly unsure if this is the right major. Science is just so ... unyielding. I'd like a little more creativity and flow in my life.

I love this heat, the muggy warm nights, the salty sea air, and yet ... I'm a fall baby. I crave those crisp, clean, cool September, October days that I grew up with. The apple orchards, winding New England roads, small town diners and Cape Cod cottages, orange, red, yellow trees. How do you take a Massachusetts girl and expect her to survive ninety degree heat all year round?

And what's that you say? No sweaters in Florida? It's too warm for boots? It doesn't ... snow???

Seriously. What was I thinking.

and we're home;

I spent the entire summer exploring this vast, incredible country I call home.

New Mexico. Arizona. California. Oregon. Washington. Montana. Wyoming. South Dakota. Colorado. Missouri. Tennessee. And Florida, always Florida.

It was exhausting, exhilarating, and a once in a lifetime adventure.

We drove the Pacific Highway, from Los Angeles to San Francisco, and then we found the redwoods. Which were just as big as I remembered. I stood at the top of the Grand Canyon and couldn't quite take in what I was seeing. We splashed our feet in the Pacific, and drank tea in Portland. We shopped in Seattle and drove through hilly San Francisco. We spent the night on an island in Washington, an island so quiet that a person could hear deer munching in the yard. Which they did quite often. Along with frolicking, and whatever else deer do. We experienced the big sky that is Montana, and fell in love with a little town called Whitefish. We drove the Going to the Sun Road, and walked through snow at the top of the Glacier National Park mountains. In July. We discovered cowboy country, and found a town with a population of four. Just four. We spent days without cell service, and decided to buy a ranch in Wyoming. Maybe. Someday. I got wheeled around Mount Rushmore when my lungs took the day off, and we ate frozen yogurt while admiring the good men carved into the mountain. We experienced the beauty that is the Rockies, and the height that is the Mile High city. We stood under the St. Louis arch and got to know Nashville.

We made it home, in one piece and with a car full of mementos.
And a lifetime worth of memories.

hello from the desert;

Seeing as how I’m in New Mexico, and have arrived at an early hour, I thought I’d take a few minutes to plug back in to the internet world.

Driving across the country is a wonderful way to disconnect. Who needs Facebook when there’s Arkansas and Oklahoma, Texas and New Mexico outside the window?

Not I.

The terrain has slowly transitioned from lush, green hills to wild, dry, and barren. Texas was a stretch of nothing but sky, brown fields, and horse/cattle ranches, with ghost towns at every exit. Abandoned gas stations stood on the right, and old overgrown school buses on the left. There were miles of empty buildings, homes with broken windows and chipping paint. It was, excuse my childish cliche, magical.

I’ve never felt so completely alone, and nostalgic for a town that I had never before seen.

New Mexico has transitioned from the flat plains of Texas to a more rocky terrain, with plateaus and mountains dotting the distance. I’m honestly waiting for a cowboy to ride his horse alongside my car and tell me to ‘stick ‘em up’.

And seeing as how I’m now on mountain time, and the sun doesn’t set until quite late, I’m off to explore what this town has to offer. And maybe photograph a tumbleweed or two..

Can I just say, that college and CF are not always a compatible pair.

I was just sent your standard issue rejection letter from a college I was very hopeful to attend. The reason? Not enough credits. Or at least, I assume it was that, as my GPA is a 4.0 and you really can't beat that.

When I graduated high school, I started an IV regimen that, at the time, was said to last anywhere from one month to twelve, and dorm room living with an IV pole is not ideal, so I enrolled in the local community college. Six months into it, the IVs stopped, and I planned to transfer. But, alas, CF struck, and I found myself in the hospital frequently that year, again putting off my dreams of a real college experience.

Roll forward to 2008, and, transfer applications sent, I was accepted to two universities that I was equally enthralled with, and ... well, I started lung transplant evaluations that year. College became lost in the paperwork, the barium swallows, the aterial blood gas studies, the xrays, catheters, blood work - the craziness that is a double lung transplant.

That fall was one of my harder times. I had a plan, and if nothing else, I like to think I have control over my life, so this plan had. to. happen. It didn't, naturally, and I was hit, full on, with the realization that I had no control over any aspect of my life, least of all the aspect I would most like to control; my health.

Having it happen again, though, in reverse, if you will, is equally devastating. Not because I begrudge the school for their decision, but because I realize that had I the proper number of credits, or any degree under my belt at all, the response would undoubtedly be quite the opposite.

I get this anxious feeling in the pit of my stomach, like I'm drowning in this town. The last time I was in the hospital, I felt as though I were going to suffocate in the bed, in those generic, hospital issued sweaty sheets, and now, this town, these walls, they're closing in on every side and it takes every effort I can muster just to breathe. To be barred the ability to finish college because of this disgusting disease that I so heartily loathe, well, it makes me hate myself.

I just want to claw it out of myself. Dig and dig and scratch through to my bones and suck out the illness.

I want to be rid of it.

Because maybe, maybe then the anxiety and panic and reality that my life is this disease, that it's all consuming, wouldn't be real.
Maybe my life would be mine, and I could breathe easy again.

May I just say, I love genuine enthusiasm.

I really love and appreciate people who are enthusiastic. It's such a great experience to hear someone talk about something that is so fascinating to them that their eyes light up and they just cannotsaywhattheyhavetosayfastenough. Phew.

This trend of 'apathy is cool' is depressing. There's nothing cool or interesting about being apathetic; it's the worst. But, wait, being depressed is like, in. Right?

WRONG!
[Disclaimer - I was never 'hip' in high school, or college, so what I consider to be 'in' may very well be 'out'. But that's just fine with me.]

Let me say this - it's AWESOME to be optimistic and excited and embarrassingly enthusiastic. The more embarrassing, the better, I always say.. [Which explains so much of my life....]

I won't go so far as to say I don't have moments, days, weeks even where I'm unbearably down about everything, times when life and lungs and boy troubles submerge me in a gigantic grumpy mood that I really struggle with. But the point is, I like being optimistic. And when I get back to that, to a point of enjoying life, is when I'm most content. And that's what I most enjoy surrounding myself with. Because there is SO MUCH GOOD in this world, and how can we only focus on the negative when the positive is beating us over our heads with every ray of sunshine and donut shop within driving distance?

With that said, I'll share a few photos in which I am unabashedly happy, which, in the grand scheme of things, is kind of what it's all about, right?

I never realized how extensive a process it is to get my life back in balance.
CF has slowly crept into every pocket of my mind and overwhelmed my world.
I woke up today and decided, with a firm affirmation, that that was not alright.

Then, with renewed spirit and morning hair, I turned on an old Feist song that had brightened my mood so many times in the past, and I ate a bowl of cereal.

Decidedly, lung diseases are best shown their place by consuming mass quantities (three bowls!!!) of Honey Bunches of Oats (with pecan bunches).

And with every mark I make in my road atlas, and every note I write to myself about what to pack for the trip, CF slowly fades into the background, a faint protest of 'Don't ignore me!' and 'Insecurity is your friend!' becoming mere squeaks of my mechanical pencil as I erase and rewrite the route of choice from Wyoming to Colorado.

This summer is a metamorphosis. I'm not a sick girl. I'm a girl on a mission to get my little blue car to the west coast and back.

No lung problems or bad attitudes allowed in this clubhouse.

a slow process;;

It's taken me awhile to get back on my feet. If I'm honest with myself, I'm still struggling, though just barely, comparatively.

For two weeks post hospital stay, I was in a daze. I would start to cry for no reason, I was constantly finding myself agitated or upset over something that normally wouldn't cause me to bat an eyelash, I was snippy and snarky and anxious.

But at the point that I was discharged, I'd had over two weeks of consistent, substantial hemoptysis [hi-mop-tuh-sis –noun: the expectoration of blood or bloody mucus] and two procedures. One, fairly routine bronchoscopy followed by a less routine pulmonary embolization, a fascinating procedure that allows interventional radiologists to enter the femoral artery in the groin and travel up and through the descending aorta into the bronchial artery to cauterize malformed, bleeding blood vessels in my lung. Technology never ceases to amaze..

That said, in the hours after the procedure, I felt, for the first time in years, that I couldn't do CF anymore. I hit an invisible, anesthesia induced wall, and as I was lying on my right side, coughing up blood YET AGAIN, a small part of me broke. I tried to control the sensation, but I couldn't see past the bed, the sweat covered pillow and blankets, the catheters, the chest pain, the blood that would. not. stop. How can I get through a lung transplant if I can't even get through this? What is the point, really? I'm never going to sit up again. I'll never stop coughing up blood. I might as well just lay here and cry.

And as a team of anesthesiologists and floor residents flooded my room, I just broke down and cried. My nurse started moving my belongings into the bathroom, and clearing out excess furniture from around my bed, and placed a new ventilator/bag at my bedside, while three doctors had me sign consent to intubate if necessary, and floor residents asked to see the cup of blood and my mom sat by my bed holding my hand as I thought to myself - I really can't do this anymore.

I was, in that moment in time, done.

It's hard to see past times like that. Once those tiny thoughts and insecurities and doubts flood your brain, they're hard to work through. Even after I was discharged, fifteen days later, I was afraid that any coughing would induce another bleed. I was afraid of sleeping, and if I rolled onto my right side I would just cry. Easy as that.

I've been home for a little over three weeks, and I'm starting to feel like myself again. I'm on the mend.. But it's a slow process, and I find myself projecting to what the next procedure may be like, down the line. Or how I'll get through the next admission, or, eventually, a lung transplant.

I also struggle with explaining this to my friends, loved ones, doctors, etc. It's easy for me to feel what I'm feeling, and understand what I'd like people to comprehend and how I'd like them to react, and offer support, but it's hard to express that. How do I say to someone, 'Sorry, you're not being as supportive as I'd like, please get your head out of your ass and help me,' without offending?

But that's a rant for another day.

The point is, the point I've been getting to, slowly, is that I'm recovering.
And that I could still use support.
CF can be so much larger than myself at times, and it takes a HELL of a lot of work to keep my life in balance..

Nearly there.
Day fourteen and I am almost a free woman.

Just in time for spring.

recovering;;

The road to recovery can feel like a long one.

After two major procedures in one day, one of which had a few complications, I'm starting to feel like myself again. Last night, however, ended with me in a fit of anesthesia induced tears, a culmination of anticipation and anxiety over a nerve-wracking procedure and my dear, fragile, blood ridden lungs.

I'm trying to process what happened without dwelling on it, for fear the fear will creep back into my mind, the fear that I'll never recover, and that my lungs won't stop bleeding, and that the rest of my life will be spent on operating tables, and in beds in a supine position, and that the quality of the remainder of my days had just dropped significantly.

So instead of focusing on that, I'm accentuating the positive.

I'm able to sit.
I'm no longer bleeding.
I'm able to stand, and walk, even if it is more of a hobble.
My lungs are taking full, deep breaths again, and I'm no longer in need of O2.
The incision site is clean, unaffected, and healing.
The sun is shining outside of my windows, I'm able to eat, sing, talk, and laugh.
Today is a much, much better day than yesterday.

For that, my lungs and I are grateful.
..as are my nurses, who had to deal with all my bitchin'.

lookin' good.
must be the shape of my head...

This waiting has me anxious.
I sat up in bed at least three times coughing up blood last night.
My body is tired, my mind is running, and my stomach is tied up in knots.

When I woke up at quarter to six to cough up (hopefully) the last bit of blood I had stored in my lung, I saw the most brilliant sunrise. The sky was a fire of reds and pinks and oranges.

Now it's gray, and drizzling, and I'm waiting to get taken downstairs for a procedure that has tied my stomach into knots for the last twenty-four hours.

Here's to hoping it will stop the bleeding.

"What a surprise to the caterpillar, when the call to be quiet, contemplative and still, results in the ability to fly."

oh, yeah;;

Since sometimes things are best expressed in a blunt, perhaps crude manner...
Tonight scared the shit out of me.

I had nearly forgotten that my lungs were diseased. I really dislike that word, disease(d), so instead, I'll refer to my lungs as being held hostage by a mutant defect living on chromosome seven.

So, yeah, I forget.

I forget the drab hospital furniture, the food trays that get placed on my bed thrice daily that I eat from while feeling sorry for myself for scarfing down prison style breakfast/lunch/dinner on my bed, by myself, with my TV for company and my IV drip on sloooow.

I forget the drug reactions, the chest pain, the nausea, the headaches, the insomnia, the goddamn, and I really mean THE GODDAMN, constant, erratic beeping of the IV pump at all. hours. of. the. night.

The overeager-to-please intern at six in the morning. The team that rounds bedside at eight. The chest physical therapy at nine. Etc, etc, etc, for fourteen days.

It blissfully floats away from my mind the second I feel that dopey high from my signature on the discharge papers.

Tonight, however, I coughed up about a pint of blood.

BOOM.

I remembered every goddamn (GODDAMN) detail.

mix tape extraordinaire;;

Dear _________,

I don't always have the right words. And sometimes I trip over my thoughts. But despite everything, and I do mean everything, you still make me smile. And isn't that what it's all about?

Finally Moving - Pretty Lights
Wagon Wheel - Old Crow Medicine Show
Bohemian Grove - State Radio
Stay The Same - Bonobo
My Guru - Kalyanji Anandji; Thicker Than Water Soundtrack
Ocean - John Butler Trio
Real Life - Tanlines
Je Pense A Toi - Amadou & Mariam
Home - Edward Sharpe & The Magnetic Zeros
Furr - Blitzen Trapper
Everything Is Free - Gillian Welch
Heart of Gold - Neil Young
This Time Tomorrow - The Kinks
All My Days - Alexi Murdoch
You Really Got A Hold On Me - She & Him
Dark End of the Street - The Flying Burrito Brothers
Above the Bones - Mishka
Say Hey (I Love You) - Michael Franti & Spearhead
One Track Mind - Johnny Thunders & The Heartbreakers

..happy listening, ears!

Recap.







Don't fuck with our french toast.

in memory;;

One whole year.

There's always something left unspoken, something that I remembered only after you were gone that I wished I could have said. I wish you knew that those gloves were hiding under the couch the entire time. I wish you knew how much you were loved. I loved your home, and your pups, and your laugh. I loved our chats and hearing about your life. I loved that you enjoyed the stories I told about mine. I loved your cooking, and when we shared cheese fries. I loved showing you pictures of my life, and looking at snapshots of yours.

I miss what our family used to be.

Love,
the middle granddaughter,
Renu

contemplating;;

I am still trying to wrap my mind around much cigarette smoke I inhaled last night.

I put myself in an unknowingly uncomfortable position, and as much as I'd love an excuse to rail against the Florida smoking laws, I opted to stay in a smoky venue for 3+ hours. Shame on me.

It's an all-encompassing frustration, though. It's not just the cigarettes, or the spilled beer on my shirt, or that guy behind me who kept apologizing for almost catching my hair on fire with his joint, it's that in a normal situation, if I was healthy, I would be laughing about last night, instead of in a near panic about my lung function. The crowd was riotous, no doubt, but nothing that I wouldn't expect from such a show. The pit was insane and it took a lot of effort by my petite self to stay afloat and find a safe corner. That's normal. And fun! And to be expected. I love shows like that.

...but cigarettes?

This is what I try so hard to avoid, I rally so hard against, and here I was, two+ hours from home with a girl who flew from Massachusetts to see this show, and a venue with no re-entry.

I'm swimming against the tide on this one. Smoking might be too big for me to handle.

I blinked and we were all grown up.
Literally, five days ago I woke up and asked my mom to let me wear my pink jumpsuit with the kitties on it, for the tenth day in a row.



The Hicks & Smiths joined us at the Naples abode for a few days of R&R. I was able to meet my cousin's baby, Addison. She's an amazing mother, and has fallen into the role with such ease. But I still picture Kristin as the seventeen year old with the fun car that had the loud stereo who bought cherry red high heels and drove around with me for hours until we lost our voices from singing along to Ludacris's fine rhymes at two in the morning.

The only singing we did this time was a song about 'baby beluga in the big blue sea'. And I must say, we sang the shit out of it.

“Experience: that most brutal of teachers. But you learn, my God do you learn.”

-C.S. Lewis

I can't stop laughing.
Oh god.
She let me wear my chain and my turtleneck sweater.
Ahahaha.
It kills me.