Day 1 in Jail and Fox Looks at the Sun

I’m in jail.

I had a choice: Spend a few days driving back and forth for outpatient tests or go to jail and get them done there.  I turned myself in. And what a fun first day it’s been.

The day started with a tease. They brought me to a room in the new hospital wing. Excited, I was. Alas, reality crushed that dream hard and fast when they realized I needed telemetry.

“Don’t unpack,” the nurse said.

There was a silver lining. The nurse usually worked on the intensive care floor, so when she asked if I wanted her to start an IV before I transferred, I almost got down on my knees and kissed her feet.  Yes, please.  Start away, O wonderful IV Goddess. Stick me, stick me good.

She aced the IV insertion, of course, like nurses from that floor do. No tapping veins or doing rain dances to summon a vein or calling another nurse to do it after you’ve screwed the pooch three times. Bingo, bango, bongo, she was in and blood was coloring the towel placed on my knee bright red. Afterwards, I almost wanted to see if she could do it blindfolded. I bet she could have.

As this nurse doesn’t deal with CF patients, she cracked me up when she told me meds from home would have to return home. Yeah, sure thing, babe. I’ll get right on that.  Where’s my carrier pigeon? I hope it can carry a large bottle of enzymes, two packs of the xopenex dosage they don’t stock here, and the myriad of other meds I brought. Welcome to CF World, Ms Nurse; it’s different from any other world you’ve ever been to. We have our own rule book and it’s 9,023 pages long. Rule #5,879: Always bring back-up meds.

I got to the “heart” floor and was joined to a heart monitor.  Now they can watch every beat and “misbeat” while I’m in my room working.  How exciting that job must be. One lead was off for an hour and no one broke down my door to see if I was still alive, so someone’s not paying close attention. At some point, I’m going to switch all the leads just to see if they notice. That’s on tomorrow’s agenda.

The RT came along with her high dose of Xopenex that makes my heart race. I was prepared for her. I had my low dose in my pocket ready for the switch. I excused myself to wash my hands, placed her dose in my pocket and then pulled out the low dose. That’s how the magic works, my friends. No conflict or arguments about it with the RT or doc, just smiles and fun. Suckers.  You didn’t even know there was a magic show going on, did you, people? 

The guy in the room next to mine must still ride a horse and buggy to work and write with a quill and ink. He kept yelling “Nurse, Nurse, Nurse.” I’m thinking, did they not show you the big red button on the remote for calling the nurse?  The same remote that you’re using to change the channels of the blaring TV in your room? He must of screamed it a dozen times. This is why some people get a pillow placed over their face Godfather-style in the middle of the night. Holy cow.  Somebody tell that guy what century he’s living in.

Many thanks to everyone for the kind thoughts and messages. They make a difference. When I wrote that CF drove me crazy, I wasn’t making it up was I?  You won’t see the CF Foundation posting any videos of me on their web site. No, I’m the poster child of what you don’t want to do when you have CF. Someone has to set the bar low. Happy to do the job.

Stay well.

The real truth from Fox.

There’s one part of the adventure Unknown left out. When they brought him to the Heart wing, his heart almost fell out of his pants. The most smoking hot of hot nurses got assigned to him. His worst fear. We’re talking stripper hot with long brown hair and green eyes. A nine out of ten, like looking at the sun.

Unknown’s a gentleman and averted his eyes. Not me. I’m a fox. I looked and my eyes burned. But it was worth the blindness.

I prompted Unknown to suggest they bring a pole into his room to see her moves, or just drop a couple dollar bills on the floor to see what might unfold. No luck. This Unknown is the wuss of all wusses. I’m stuck here because his little hearty heart did go pitter patter a little bit funny. No one hooked old Fox up to a monitor when this nurse walked in, but they should have. I’m still dazed by what I saw.

The other terrible part of this current adventure is that there is no beer to be found.  None, not a drop. A little AC/DC playing, some beer and tonight’s post would have had a much different tone. Unknown would have titled it “A letter to my wife: I’m so sorry for what I did in the hospital.” 

This is when I need to be hanging with Tiger, not Chicken Boy.

Someone send a six-pack, a boom box, and a stack of dollar bills. This party needs a jump start.

Fox out.

Fox’s Adventures in Los Angeles – Tri-Tip Sandwiches and Ice Mural


Fox here. Unknown banned me from posting. But the Lakers won, and now Unknown’s passed out on the floor after drinking a sixer of Old Milwaukee and two Caramel Frappés. So, I’m back.

As insurance, I just took some David Hasselhoff-style blackmail photos of Unknown to make sure I return again.

Tonight’s a good night to share one of my favorite places to eat in Los Angeles on weekends. You won’t find this carnivore’s paradise in Zagat’s or any tour guide. It’s a local’s-only place in the San Fernando Valley called Jim’s Market.

Hunting made easy

You don’t actually eat at the market. They sell the meat to the catering guys, who cook it up in the parking lot using the bad-ass BBQ you see to the left in the photo above and in the photo below. They serve the food from a catering truck.

I have one of these on order for my Midsummer Nights's Eve party

The wheel on the BBQ lowers the meat to the charcoals for the perfect level of heat.

I order the tri-tip sandwich, which is smoky, tender and tastes nothing like raw squirrel. No need to hunt when you have cash.

It’s all good. Sitting in the sun, drinking Schlitz, eating cow on a bun.

And, when you’re kicking it, there’s even some urban artwork to contemplate.

Ice House mural of the good old days

From a distance, it looks pretty nice – ice truck delivers ice to kids. Kids play with ice. But when you look closer, things get spooky.

Is that really ice?

I look at this mural and think WTF is going on here? I almost don’t want to ask. A twisted game of something?

What’s up with the boy in brown pants?  It’s ice, you dunce, not a Popsicle. Who peacocks to eat an ice cube?

I’m not sure what the leprechaun in the straw hat is feeding the dog, but I’m thinking you make it with chemicals and serve 5 to 7 years in prison for selling it. The eyes on the pup are a dead giveaway – dilated cartoon eyes whacked out on meth.

In 5 minutes, this dog will go postal

See what I mean? It’s best not to ask questions. It’s freaky. But the meat at Jim’s makes up for it.

So, if you’re around on the weekends, stop by. I’m the only fox eating there. We’ll kick back and discuss life, beer and ice.

Fox out.

Monday Musings – Tightrope Walking and Cystic Fibrosis

What would it be like to be a tightrope walker?

Take one of the most famous, Philippe Petit: What’s it like to stand that high in the air, suspended between two buildings, knowing that you are completely alone? Should you lose your balance, no one will be able to help you. You can’t Google a solution or tweet your tweeps. Your cell phone rests out of reach.

Tinkertoy Tightrope Walker by moi & daughter

It’s you and the wire.

And that’s the obvious connection to cystic fibrosis – those moments when it’s you alone on the wire. You’re walking the tightrope with no doctor, no friend, no loved one, no tweet, no phone. It’s you and the disease connected and suspended without a safety net.

It doesn’t matter whether you have CF or you’re the parent of a CF child. At some point, you have a moment when you find yourself out there, above the street, deep in thought about your predicament. What can I do? What do I do?  The decision rests squarely on your shoulders.

But there is a deeper connection of tightrope walking to CF. It’s that moment when you look down and rediscover the true situation you face. You remember that you spend three hours of your day doing treatments and coughing up mucus that makes others jump back in disgust, and you take more drugs in one month than most take in a lifetime. Or, when you arrive at your hospital floor, they welcome you by name.

Some days, it is best not to look down at the street below. You can’t turn back, and looking forward doesn’t help either. The wire is long and platform ahead shrouded in fog. Surprises, wind, and close calls line the way. Your past experiences play back in your head, especially the ones that do not help.

How did I get here? Is this really my life? What do I do?

So, what do you do? Yes, you can take one step forward at a time. We all do that. However, there is another choice.

This is where Petit’s actions on the tightrope over New York City provide a possible course of action – lie down on the wire and look up. That is exactly what he did while suspended above the streets of NYC. He looked up, not down – the opposite of one’s instinct at those heights. And that is the true connection of the tightrope walker to living with CF – sometimes it’s best to live in the moment and not worry about what’s below, behind or in front of us. Block it all out and look up at the sky.


Letter for My Daughter – 06/03/10

Dearest Daughter of the future,

This post goes down as my most frustrating to date. Argh. I’ve been struggling with it, wrestling it, for weeks. But I feel better when I write “argh,” which I’ve done twice now.

Let’s move on.

I apologize for being a failure. Or, at least for not living up to my full potential.

Everything was there for the taking. All in front of me, a buffet of opportunity, waiting to be placed on my plate next to the mashed potatoes of good fortune. The books, school, a different path, and I took the one most traveled – the easiest one, well worn by others lacking direction. I’m been in recovery mode every since.

Was I really the person who got involved with those people? The ones who lied and made bad choices.? I was. Yes. That was I.

I ventured out on my own at 18, CF warping my mind, and no guidance to help me mash down my own path in the grass. It’s no excuse. My intention isn’t to be cryptic. It’s hard to relive my mistakes. I don’t recognize myself in my past actions. How could I have shown such poor judgement and done so many stupid things? Argh.

I told you that’s it okay to make mistakes – that’s how we learn. The key is not to make the same mistake twice. I have an asterisk next to that advice now.

Call the dogs, they'll clean it up.

There are mistakes you can’t make in life. They are mistakes of great importance with irreversible consequences. When you’re 16, 17, 18, your brain will feel as mature as you think it will ever get. Wrong. Remember that. You’re wrong. That’s not going to happen until you’re around 25, or in my case, never.

What’s really ironic is how I was fearful of making mistakes that could have had a huge upside or reward in life and fearless when it came to actions with huge downsides. So, when your friends ask you to go smoke something behind the gym, know that it is a mistake you’ll have to live with forever. For f’ing ever and a day. Avoid it.

My message today: take risks, make mistakes, but keep an eye on the up and downsides. There is potential embarrassment, and there is what keeps you from achieving everything you’ll want later in life. I chose the latter when I should have chosen the former. Embarrassment may make you feel like dying at the moment, but it is fleeting and makes for funny blog posts for your kids. The other stuff will haunt you for life.

Choose your friends like you once chose your Pokemon – pick the good ones. And don’t follow bad ones into dark places. You’ll spend your life clawing your way out. And worst of all, you’ll never forget your time there.

With love. Take care of your mother. No one loves you more.

Four Bad Ideas for CG’s Poetry Contest (and one from Fox)

As the three of you who read my recent poem for Cystic Gal know, I’ll never make a living writing poetry.

What you may not know is that C Gal is having a poetry contest. You can enter at this site:

I thought I’d enter. However, when I sat down to type some “badass, burning up the page” verse, I didn’t make it much farther than the titles.

Here are the titles of the four poems I contemplated writing:

Ah, the captions that could have been

“Nice Tweets and Ass.” What’s not to love about a poem expressing the joy of Twitter and a funny donkey? That’s what I thought until I realized how it might be misinterpreted. I’m forever haunted by my caveman subconscious. Don’t you feel bad for me now? Though I must say I’m more of a donkey man. Hold it, that doesn’t sound right either? Ah, forget it.

Ah, the good old days

“Two Hot Chicks, a 12-pack of Schlitz and Fox.I can blame my outer Neanderthal on this one. C Gal accuses me of including these subjects in most of my posts, the first two at least. Fox was the new addition and the one gent who could actually act on a this opportunity for mayhem. I liked the concept, but when I started to write it I realized it was a better fit for a porn site, not poetry. Though I must admit that Fox bowls quite well.

creative common license

Oh, no, Firestone FS507's rolling my way

“Memories of Road-Kill Stew.” A title like this wouldn’t have had a shot on C Gal’s site, which is a haven for cute animal talk and photos. This was supposed to be a loving poem about the actual stew my mama made me when I was young growing up next to a highway. There’s nothing like the smoky taste of meat that’s been curing on a roadway and tenderized by big rigs. Not sure C Gal’s judges would have appreciated it. Had I been able to serve up the actual stew, I might have changed their minds. Though it tastes nothing like chicken stew and tends to come back up the first few times you try it.

Glive it up for Glee

“Glee is very Glay.” Not that there is anything wrong with being Glay, but insulting this popular ladies show would be a quick path to the judging trash can. Better title: “Glee makes me feel happy and Glay.” That would have been a sure winner with the ladies and Madonna fans of the world. Again, nothing wrong with gloving the Material Glirl.

Fox suggested the following poem. I warn you that it’s his opinion is not mine:

Living la vida loca on the road

“Silvia Plath writes like a dude.” I can’t think of a title that would piss off female poetry judges more than this one. Hate email would’ve filled Unknown’s inbox. None of which he would read because they’d all be too long, arguing every point from every poem that Plath ever wrote, and every essay that was ever written about Plath, and why he was so wrong and misogynistic for saying so. It was a joke, ladies. College is over. Time to marry rich. – So says Fox. p.s. Someone send over another 12-pack. I just got my second wind.

Stay well.

A Message from Vulpes vulpes

Dear Friends,

That's Mr. Vulpes vulpes to you, pal

Unknown is taking the night off to recover from Lost and 24 being cancelled. He’s curled up in a ball sucking his thumb, watching Glee. So, he asked me to write tonight’s post. Not exactly the brightest chromosome in the cell, is he? Letting moi, a Mohito-drinking fox, write anything. However, I choose to behave for once.

Let me thank each of you for reading this blog. I know it means a lot to Unknown. And, if he were here, he’d get all teary-eyed and probably write a poem about how much it means to him, you visiting and commenting and all that.

You can thank me now for saving you from that sappy piece of shit – I mean, poetry. Did I just say “shit?” Unknown will blow a gasket. He’d write it sh** with those cute little asterisks. Not tonight, baby. Adios to half of the readers. LOL to that, Unknown.

Seriously, Unknown feels very fortunate that you choose to visit this blog. And I know he wishes you the best life has to offer and good health. Me, Foxy, I wish you’d hit a fat squirrel on the way home from the office each night. Roadkill saves me having to work so hard to feed my family. Do your part next time you see that critter crossing the road, speed up and stay off the brakes.

Second thoughts about doing that? Ask yourself, “What would Darwin do?”

Fox out.


Fox Ventures Out for a Day Trip

Fox is a trickster

Fox jumped out of my computer today and landed on my desk, sending papers and books everywhere. Then he sat and stared at me with his fox eyes, making it hard to concentrate on my work. Finally he spoke and told me he had a gift, but I didn’t see a package.

Everything went black for a second. Then I had a vision:

My tweeps and I were in the middle of the Pacific Ocean on a fast-moving yacht.

Dragging in the water behind the boat was what looked to be a giant green Michelin Man, but it was really cystic fibrosis. Sharks were tearing pieces off its body as it bounced up and down on the water. It was still alive, but clearly suffering, and had seen better days before it had become a toy for the sharks.

@CysticGal walked up to me holding a paint brush. “I’m painting the yacht purple,” she said.

“What happened to pink?” I asked.

“Purple is the new pink, dummy,” she said.

She looked fantastic in a sharp-looking Calvin Klein boating outfit and Jimmy Choo deck shoes. She walked away and splattered purple paint all over the deck. Magically, each splotch transformed into a perfectly shaped flower.

“Hey, Ronnie,” I said as @runsickboyrun and Mandi jogged past me. I did a double-take because Mandi was having a hard time keeping up with Ronnie, who looked supercharged. Their video crew couldn’t keep up and tumbled over the side of boat.

A camera appeared in my face with @onlyz peering over the top. “Cheers, mate. Glad you finally woke up. Thought you was a right bang pludge wonk there.” I had no idea what he said, having left my British English/Real English dictionary at home.

He snapped another three photos, as @CFFatboy, dressed in his tattered college alumni shirt, stuck two fingers behind my bagged head, rabbit style. He had a protein shake in the other hand, but looked like he’d exceeded his weight goal by a few dozen pounds.

“You still need to drink that stuff?” I asked.

“Hard habit to break,” he replied. “Benching a ton these days. Loving that.”

Looked like he weighed a ton judging by his torn clothes, kind of like the Hulk – if the Hulk had a Florida tan and wasn’t green.

I went to the upper deck, passing @rlcarroll working on his iPad, drinking an Old Milwaukee. “You were right, Unknown, this beer is good and my iPad does rock. Who’s Laughing Out Loud now, B-atch,” RL boasted. I thought about kicking the iPad out of his hands into the water, but I saw his sunburn and decided silence is golden.

Tasty goodness in a bottle

A woman with her back to me was loading a large surface-to-air missile launcher. I’d never met her, but I knew who she was.

“Finally, we meet” she said. “You ever going to take that bag off your head?”

“When I can afford plastic surgery,” I replied.

She smiled. I looked at her eyes, happy to finally meet her, and knew today was important to her.  “Will that be enough?”

“Oh, my toy?” she asked, holding up the imposing weapon. “I’m ending this madness now.”

With that she walked down to the back of the boat, passing @seanset, @cfstinabug, @CF_gurl, @Nanosmakemepuke and my other Twitter pals, who were all dressed in formal wear. @CysticGal had changed outfits, too, Vera Wang spring collection, and had some rock star I couldn’t place next to her. She was happy because she set the drink theme as “M,” as she loves alliteration. Everyone drank mohitos, martinis and margaritas.

My newly met friend and her large weapon stood at the back of the boat, CF dragging and bouncing in the water, eyeballing us, fight and anger still in its eyes. But it knew what was about to happen. The hunt was over.

She raised the large MRP weapon of destruction to her shoulder and sighted it squarely at the monster, whispering something to herself, adjusting to the motion of the sea and the monster. Up and down the boat rode the waves until a large crack broke the silence, a trail of flame and smoke followed the shell to its target.

Pieces of CF flew everywhere, landing in the water. @onlyz detached the dangling rope. “Well, that happened,” he said, wiping his wet hands on my bag, making it stick to my head.

We left CF behind, the sharks cleaning up the bloody mess until there was nothing left.

Everyone raised their glasses, toasted, sipped, and was quiet. Warriors lost filled our hearts and minds, as we knew it was time to head to port.

The vision ended there and I was left to wonder when Fox would return and send me back to the yacht. The best was yet to come.


A New Weapon Arrives – fear.less Magazine

Two subjects I think about a lot are cystic fibrosis and fear.

You had me at fear.less

I know the exact point CF became a disease of fear for me. That story is sitting in my blog’s “drafts” folder. I haven’t been able to finish it.

Before that tipping point in my life, I faced down this disease with the bold confidence of youth. After that moment was a life fearing what I had to lose.

So, it was with jaw hanging open that I started reading a new online magazine called fear.less. To quote Rene Zellweger in Jerry Maguire, “you had me at ‘Hello,”” which for me was the title.

A magazine about facing fear head on? How many CF warriors and warrior parents can you see in their upcoming pages? I plan on emailing fear.less with a few suggestions.

Here’s the link,  Tonight, I applaud the fear.less creators for telling the stories of people who have “miles to go before they sleep.” I can’t wait to add their stories to the CF stories I read every day.


Monday Musings: The Right Stuff?

[Note: This blog contains the rantings of a madman. Following any actions in this post or others will definitely damage your health, if not kill you. In other words, do not attempt anything discussed here, please. All medical decisions are best made with medical professionals who haven’t lost there minds after years of battling CF.]

Pilots, Astronauts, and Pushing the Envelope

I love the movie The Right Stuff. What’s not to love about the coolest guys ever flying jets beyond the speed of sound and riding rockets into space. Heroes, all of them.

What kind of courage would it take to do something like that? To risk everything – your life and any love and happiness you might have known – to fulfill a dream unlike any other. And then to repeat it in test flight after test flight with the odds increasingly against you?

Who would you have to be to do that? Man or woman? It doesn’t matter. Who?

Now, a hypothetical question. Let’s say you have cystic fibrosis in the moderate stage, four hospitalizations a year, hemoptysis, and you’re trying to hold on to what you have. But you know your luck can’t last forever. You experience a slight downturn in your PFTs and wonder if you have any tricks left.

Photo: jurvetson

And you understand you’re potentially one day away from an infection that might put you down hard or move you to the severe stage – getting CF’s painful backhand across the face, your head turning in slow motion, teeth and blood flying as you drop to your knees – not enough to kill you, just make you suffer more than you’ve ever suffered before.

New medications are years, a half dozen trial stages, and a mile of red tape away. But there is something else, a rocketship parked in the desert with your name on it. A way to bypass the delays. Do you get in and risk it?

Again, hypothtically, what if a chemical existed that might provide breakthrough results right now?

But there’s a catch – there is always a catch.

  • The chemical is hard to get. You can’t drive to your local vitamin store, buy a bottle and start ingesting it like a pill-popping madman. No, there are hoops you have to jump through and white lies to tell before you get it.
  • You have to apply it to your skin and there is no set of instructions how to do this or what mixing agent works best. Take your pick.
  • There are no dosing instructions. There is advice from some braver test pilots, but that’s it – no Tylenol box with the maximum dosage for a 12 or 24-hour period. You can go crazy and bathe in it if you like. No rules here. You control the throttle.
  • Unlike experimental trials or any trial, this is mostly hypothesis with a few test flights.  No real laboratory results or longterm safety testing. It’s you, the test plane, and miles and miles of blue sky. Will you be able to reach the eject handle while cartwheeling out of control?

With these obstacles in mind, what would you do? Would you place the compound on your skin like a nicotine patch? No idea how your inner chemistry will react?  Would you risk everything?

Do you have the right stuff? Is it the right stuff?

I look up at the stars as I would any other night. But this time I hear a noise in the distance echoing off the canyon walls and desert floor, breaking the silence . . . 10 . . . 9 . . . 8 . . . 7 . . . 6 . . .

Helmet tucked against my body, I walk toward it one step at a time.


Fox pays me a visit

The Trickster

Last night, Fox came to visit.

Fox: Why are you sleeping?

Me: I’m not.

Fox: Your PFTs went down.

Me: I know. I was there.

Fox: What are you going to do about it?

Me: Cry like a baby.

Fox: This could be the beginning of a bad trend.

Me: Crying or falling? What can I do?

Fox: You’ve fallen before. Get back on the bike, literally.

Me: I’ll bleed.

Fox: There’s always a trade off.

Fox left.

I sat in the dark, thickheaded, and pondered what the annoying trickster had said.

Do I have any tricks left of my own?

The clock is ticking.

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