DEATH BY CHOCOLATE

While I'm workin' the espadrilles and throwin' down what are sure to look like some heavy duty gang signs, one thing's for sure: no matter how many ways I tie my scarf, I'll never be European. This fact evidenced by the purchase and consumption of one single chocolate bar.

After nearly three weeks of hospital food, I broke down yesterday and high tailed it to the supermercado nearest the hospital under the guise of post c-section rehabilitation. What I was really doing though was hunting for deodorant and chocolate, two such things one cannot live without postpartum. Ten minutes and two euros later I had my fix, one of those really big chocolate bars, not at all like the American jumbo sized candy bar but more like the 'could be a tennis racket' size.

I will admit to being more Snickers than I am Nestle or Hershey but being that there are no Snickers, Whatchamacallits or even Milky Ways on this side of the Atlantic, the Nestle brick would have to suffice. It all started with my roommate, a Euro-waif, who not even a week after giving birth is back to wearing her size zero jeans. I'm not kidding. Size ZERO. Anyway, there she was her scarf draped casually over one shoulder and her chocolate bar resting in her lap, the tin foil folded neatly back like you would a fine linen bed sheet. Carefully, and what appeared to be in slow motion, she snapped off two little pieces along the perforated line in the chocolate bar. Until this moment of watching her fingers break those chocolate pieces away from the mother-load, I had naively assumed that executives in the chocolate industry had designed those perforations specifically to aid in my consumption. They were, in my small world, tracks for my teeth to rest in, leverage for the task at hand. Any notion of opening a chocolate bar but not eating it whole was unfathomable, dare I say sacrilege. Yet there she was, in her chic Euro scarf and size zeros wrapping the remaining 34 million squares back up for Armageddon. That's just about when I decided that a year's worth of Spanish living owed me the same luxury and so I set off for the supermercado.

As fast as my swollen little ankles could carry me, I waddled on down the road, entered the store and made a beeline for the novelties aisle. I'll admit, the deodorant I threw in the basket was just a decoy, and a pretty lame one at that. The cashier, fully capable of calling my bluff, thankfully did not. I'd convinced myself that I too can enjoy chocolate in moderation, one, maybe two squares at a time thus making it last until well into the following week. You know where this is going, don't you. [sigh]

So what happened once back 'home' at the hospital? Yeah, you know what the fuck happened. I snap off my two pieces, wrap the remaining bar neatly back up and put it to bed in the mini fridge for safe keeping. Fingers trembling ever so slightly in anticipation of what's to come, I sit down and pop the first perfect little chunk into my mouth. Heaven. The second piece chases the first, a sweet fountain of milk chocolate all the way down the back of my throat, almost pornographic. This, the European Way, should satisfy me but of course it doesn't. Instead it's like teasing a lion with a chicken wing from KFC. Not ten minutes later and I'm up for another two pieces, wrap it back up, mentally chastise myself for the indulgence and put it back in the mini fridge. Ten more minutes go by, same thing. Two more squares gone. The fourth trip I just say fuck it and eat the whole damned thing.

Sadly, the punishment for my crime is not the absence of the Nestle bar but rather the roommate's Cadbury sitting untouched since the day before between the strawberry and vanilla yogurts on the top shelf of the fridge, his wrapper snug as he hisses disapproval in his haughty French accent because European disapproval always comes with a French accent, “Go on now, Fat American. No more chocolate for you!”

Yes, moderation it appears is proof positive that I'll never be European.

No matter how many different ways I tie my scarf.

REINA SOFIA HAS CF

 

I'm sorry but I just wanna tuck those puffed out
curls behind her ears each & every time I see her.

In case you're not up to speeed on your Who's Who of reigning monarchs, let me intoduce you to Reina Sofia.  Reina Sofia means a lot in this country. First off, she's the queen of Spain and a pretty likeable gal from what I can gather although I do think it's high time she updated her hairstyle. But let's face it, when you're the queen you get certain perks no matter what your hair looks like.   As you probably guessed, Reina Sofia has a lot of things named after her: streets, parks, airports, and tons of buildings. Even the hospital that we go to in Cordoba for our quarterly CF clinic is named for Her Majesty. Hence, the title of this post. No, the queen of Spain does not have cystic fibrosis however the hospital named for her does~an entire unit in fact.  And that is where we found ourselves earlier this month.

Two weeks post visit and I'm now cursing myself for not having taken better notes because quite honestly, it's all kind of a blur.  Three squabbling kids squished into a doctor's office has that effect on me, ya' know?   But there were some noteable differences that are worth a mention.

1.  THERE IS INDEED AN "I" IN TEAM  


Dr. Cowboy caught the wheeze and prescribed
one puff of Seratide before each vest session
over a three week period.

Dr. Cowboy is our pulmonologist.  That's not really his name but whip out your Spanish 101 notes and I'll bet you can figure it out.  Anyway, he's like the captain of the CF team for us; the main guy we see and the one who runs the show.  He interviewed us and logged copious notes into the computer about the kids' health history and then he sat down with each of them to take a listen.  When he was finished he handed me two sealed medical packages:  the swabs for their throat cultures.  At first I was a little taken aback.  Me?  I have to gag them?  You can't be serious, I'll screw it up.  I'll puncture a lung or pierce a vocal chord.   Thoughts like these raced through my mind while my brain was trying to translate, that's your fucking job, buddy minus the obscenities into Spanish.  Alas, no translation needed.  We were to take the culture kit down to the lab.  The kids would get their throat cultures done there.  Hmmmm.... interetesting, I thought.  And then we were given a two inch stack of medical orders and told where to go to get each one done. 

So much for getting out of the
'homework' assignment. 

Our visit with Dr. Cowboy was a quick one.  But our time in the hospital, not so much.  The time we would have spent waiting in our old CF clinic routine was spent walking long, white corridors looking for faraway laboratories and hidden specialty offices.  I still haven't figured out how all the players come together - but for the time being it appears that technology links them.  When we entered the office of the GI doc, the first thing she did was pull up Dr. Cowboy's notes from twenty minutes prior.  She did her own dog and pony show, entered the new data and gave us our homework: collect three day's worth of fecal matter for each child and bring it back so labs can be run.  Oh but Good Doctor, they're pancreatic sufficient!  Best check those notes again....
    

2.  TAKE A NUMBER
Spain will forever be the country of 'manana'.  Why do today what you can put off til tomorrow?  I'll never get it, being of good German stock this mindset drives me nuts.  As we were running all over Reina Sofia (the hospital not the Queen) there arose a common theme:  la vuelta (the return).  Every stop was just that, a stop.  We took our number, waited the fifteen minutes to be seen and when it was finally our turn we were able to go in to make an appointment to come back.

Labs?  See you on Friday morning!
GI?  Catch you after labs!
Radiology?  We'll be there..how's Friday for you?

On one hand it was frustrating to me that clinic seems to be so compartmentalized here; each entity doing it's own thing on it's own schedule and I had to remind myself that it's not wrong, just...different.  Yet on the other hand I left each doctor feeling as though we were in really good hands, dealing with the experts in their field which helped me to swallow the inconvenience pill that comes with living in a pueblo 45 minutes away from Cordoba.

3.  OUR FREE LUNCH
Dr. Cowboy was very interested in how CF clinic was run in the States.  He asked about the frequency of our visits, which turns out to be the same here - every three months unless something comes up.  He asked about who made up the members of the care team, which again is much the same except there is no pharmacologist on team here.  And he asked about medications and the protocol in using them.


Then, very slowly he leaned over and said, "I want you to understand something very important.  Very important."


I was on the edge of my chair.  Charlie and Lola were taking turns jumping off of the exam table and Henry was unrolling gauze pads by the meter.  We were about to be denied, banned or exiled I wasn't sure which but it was serious from Cowboy's tone.

"You will not pay for medication here.  Do you understand?"


Uhm, no.  Actually, I don't because it's like a billion dollars back where we live...you know, in the Land of Milk and Honey where everyone is blond haired and blue eyed and drives a little red Corvette.  "Excuse me?" I managed.


"Cystic Fibrosis is a chronic and life threatening disease.  You will have a standing order at the hospital pharmacy for each child's prescription needs."

"How much is the copay?"


"The what?"


"Copay,"  I repeated.  "The part that we are responsible for."

"There is no copay for these medications.  As you run out, you will come in to Reina Sofia and refill your order.  We're not here to make a profit.  We're here to treat a disease."

I was speechless but managed to kick Joe's foot, my signal for him to confirm that I hadn't misinterpreted anything.  We would later learn that prescription coverages vary depending upon which region in Spain you live in.  In Andalucia, the regional government has funded a healthcare plan that covers prescription costs for chronic diseases such as cystic fibrosis.  Not funded in Andalucia's plan however is The Vest.  Patients here use other pep devices such as the Acapella and the Flutter in combination with manual cpt. 

Having access to free medication almost seemed too good to be true.  Was Hypertonic Saline available?  TOBI?  Pulmozyme?  Azithromycin?  When should we expect to start Charlie on the next batch of drugs?  I asked Cowboy what our protocol would be under the team's guidelines.

"Your children are uniquely yours.  Charlie is different from Lola just as Lola is different from Charlie in spite of them having the same genetic make up for this disease," he began.  "I do not feel comfortable starting either Charlie or Lola on a new drug just because they have a birthday.  I want to know first how their bodies are handling this disease, what it looks like for them.  I want to study their chest xrays, review their labs and get a baseline of where we are now before we jump into a change of plan."

I was silent, liking what I was hearing but still a bit paranoid that we might miss out on a more preventative approach to their care.

"If you're concerned about the availability of these treatmenet options, don't be.  We have access to them when we're ready for them," he continued.  "Let's keep a few things in our back pocket for the time being while we figure out where each child is.  Is that fair enough?"

"Yes.  Yes, it is."  We nodded in unison and explained to Cowboy that while we want to be very aggressive in a proactive approach we struggle with the possibility of over medicating the kids and as a result are very much interested in trying a more holistic approach before jumping immediately to drugs.  Cowboy listened, we talked some more and closed things by confirming that clinic had our contact information for the pending lab results.

By the end of our first clinic visit, I felt good with where we had landed.  I felt like Cowboy had listened to us, heard us and in the end it just felt like a good fit.  As with every clinic visit though, I was completely fried.  Clinic visits take a lot out of me physically, mentally and emotionally each and every time.  There's the early rising, the anticipation, the planning - so much going into it all to make it as worthwhile and thorough for the kids as possible.  And in spite of the differences, which were really just that - differences - no better  no worse, there was a constant.  That is to say, the constant of knowing that the team members who are dedicated to helping us fight cystic fibrosis for the sake of our children want to give us The Best.   Make no mistake, I'm not talking the best American care or the best Spanish care but rather The Best CF Care. 

And for that we are very, very grateful.

MY MCNIGHTMARE

For us, it sometimes seems that there are two worlds when it comes to CF.  The world of pancreatic sufficiency and the world of not.  To the layman this may be new ground.  Pancreatic sufficiency?  What's that?  I thought CF was a lung thing.  What's the pancreas got to do with it?  Quite a bit, actually.

For upwards of 85% of those fighting the effects of CF, the pancreas is a real thorn in the side.  Literally.  Do the math and that's roughly 25,500 individuals who are not only fighting for every breath but also fighting to keep their bodies adequately nourished.  You'll recall that one of the major nightmares associated with CF is the thick, tarlike mucus that gets stuck, plugged up if you will, in the airways of the lungs.  This crud, for lack of a better word, also coats the intestines and pancreas causing the digestive enzymes that your pancreas makes to be unable to reach your small intestine.  These enzymes help break down the food that you eat. Without them, your intestines can't fully absorb fats and proteins thus impeding the nutrients from getting to where they need to go.  Kind of a rough problem to have don't you think?  Break down the 'malnutrition' euphemism and I'm talking about some really important vitamins not being absorbed into the body which can make for a real mess.  Imagine eating a full meal and not getting any nutritional bang for your buck; instead, it running straight through you like water through a seive. 

Take vitamin A for example.  Wanna have some skin problems?  Okay then, eliminate it. 

Then there's B12.  Wanna be anemic for a while?  Fine with me, nix that one too. 

Don't forget about vitamin D.  If you're up for some bone abnormalities axe it along with A & B12. 

Oh yeah, let's not leave out vitamin E.  Neurological problems, anyone?  Really?  Okay, zap it.

You want some more?  Fine.  I'll raise you some blood clotting issues for your vitamin K.

Vitamins A, B12, D, E and K are what I think of as the BIG 5 when it comes to CF.  I'm usually on the edge of my chair when Elaine, the dietician on our team, reads off the kids' levels from the blood tests.  I don't know about you but I think it's high time we had a Pancreas Appreciation Day.

Lucky for Charlie and Lola, we are still living in the world of the other 15%.  Yep, in one aspect of CF we actually won a prize:  pancreatic sufficiency.  Both kids have a pancreas that is fuctioning enough to get by.  Enough meaning, nope, it's not quite normal like the average Joe's, but it is managing to process enough of the goods that we don't have a regimen of enzyme pills to pop before every meal.  As I type this, I wrap a couple knuckles loudly on the wooden table where my laptop sits;  once for good luck, twice for continued good luck and a third time just to be sure Whomever heard me the first two times.  We were told from the git go that pancreatic sufficiency can be a fleeting thing, often waning as time goes by.  So for the time being, I rewind and hit play every few days or so just so I can hear my pediatrician's words of wisdom from way back when we got Lola's diagnosis, "Enjoy the good health while you have it..."  That said, we pay very close attention to the kids' diets; in short, what goes in AND (drumroll) what comes out. 

Even before we became a CF family, we were particularly Nazi in our menu selection for Charlie.  The kid never knew what Gerber was because his Papa made all of his baby food from scratch - typically Spanish if I do say so myself.  Breast milk for the first year, formula never touched his lips. The poor kid never even had a cookie or ice cream until well after his second birthday.  Abusive?  No.  Neurotic?  Perhaps. And quite naturally, we were the laughing stock of the entire extended family.



Overprotective.

Anal.

Ridiculuous.



Whatever.  We had our premie, he was more than thriving and Joe and I made a pact that no matter what the cost, our kids would ALWAYS be given REAL food for a fighting chance at developing a decent palate.  We also agreed that we would never sell out to the convenience of fast food chains or the pleas for Coca Cola.  Afterall, what exactly are the nutritional benefits of giving pop to a 2 year old?  We figured that if he never had it to begin with, that he wouldn't know what he was missing.  And guess what? 

We were right on the money.

Charlie ate like a king and was climbing up the growth charts.  The kid was remarkably healthy too, which we attribute to a diet that is rich in fruits, vegetables and fresh proteins.  We have consequently followed the exact same philosophy with Lola and now Henry.  Until last week.

Yeah, last week was a first for me as a parent.

We were out east at Joe's sister's house; celebrating the birth of Christ and mourning the loss of Babu Mercedes.  It was bittersweet; the whole family together but the center of it - the heart - missing.  Joe's mom had been fighting one form of cancer or another ever since I had met her some twelve years ago.  We were all devastated at the loss - our loss...but thankful that her suffering had finally come to an end and that she had passed with her children at her side.  So there we are, fumbling through the ritual that is Christmas, still somewhat numb from the loss but finding the joy through the eyes of the children who are squabbling, playing, teasing...just being kids.  At one point, we decided to divide and conquer a seemingly insurmountable to-do list by splitting the kids up amongst the adults.  We took off, tackled our respective lists and met back at the house to debrief.  And this my friends is where the double homicide nearly occurred.

SIL:  Lola, did you tell Mamá what you had for lunch today?

Me:  Did Tita Susi and Tita Pepis (note:  Pay-peace, not Pepsi) take you out for a special lunch, honey?

Lola:  [grinning from ear to ear]  Mmmmhmmm.

Me:  What did you eat?

Lola:  MADONNAS
Me:  [hopeful yet worried]  Madonnas?
SIL:  No, she means MCDONALD'S.  And you shoulda' seen her!  What a machine...she went to town on it!

Me:  [jaw clenched, forced grin and feeling like I want to crap all over her white carpet]  What did you order for her?  Chicken nuggets?

SIL:  Are you kidding me?  A BIG, greasy hamburger.  You shoulda seen her wolf that thing down!

Me:  [dryly] Well, I hope she enjoyed it because it will be the last one she ever eats.

The maniacle fits of laughter spouting from my sisters-in-law sent me out the front door and around the block on a fast walk.  Pissed doesn't even come close to describing how I felt at that point.  I was furious.  Go ahead, feed that garbage to your kid, but not mine.  Hadn't they seen Jamie Oliver's experiment?  Well yeah, it was considered by most to be an 'epic failure' but it sure did illustrate a point.  We had invested nearly 5 years in teaching the kids about what a  heatlhy choice is and why it's in their best interest to eat for fuel and these two knuckleheads had undermined everything in 2.2 minutes.  INTENTIONALLY.

I decided to let it go and left it on the back loop of the sub division.  The damage was done.  Ronald McDonald had found his way to my little girl's digestive tract.  I'd just have to keep a closer eye on her the rest of the week - no more 'errands' with the Titas, that was for sure.  So not wanting to make a scene, I trudged back to the house and vowed not to make an issue out of it.  Afterall, the more I drew attention to it, the more the kids would remember the whole thing.  I would give the Titas a Get out of Jail Free card and chalk up the lapse in judgement to extreme grief.  For now it was best to let sleeping dogs lie.

Now reading this, I know there are some eyeballs rolling so let me explain my point of view on the whole fast food boycott.  I know that for many with CF, especially those who are struggling with digestive issues, that food becomes a major focal point.  I've heard so many talk about pumping in those extra calories in any way, shape or form because the effects of CF really make it a challenge for people to keep weight on.  For me however, I struggle with the concept of 'anything goes' just to get the calories up.  When I think about how that processed food is made; the chemicals, the grease, the scraps, the fat - it just cannot be good for your body at all.  I think about foreign nations who perhaps aren't so developed as we are and I wonder, how come I never read about them having a high rate of obesity, heart disease, cancer, diabetes, etc.?  I'm no scientist - in fact I'm about as far left of scientist as one could possibly be.  However, I believe to my core that good nutrition has made a difference in the health of my kids - less flu, less colds, less everything and I'll be damned if I'm gonna sell out now. 

As for Lola's Date with the Devil?  I guess I'll just be thankful that her GI tract is solid enough to handle the garbage that the titas dumped into her. 
Grrrrrrrrr....