Tag Archives: fighting cf

Fox Ventures Out for a Day Trip

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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.

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CF, Do You Hear Them?

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[This post is best read with heart-pounding rock n roll playing]

Yum, but every day?

Without my wife, I’d be somewhere in downtown L.A. pushing a shopping cart, I.V. pole secured by a couple of old belts, loyal dog at my side. The Wandering Cystic would be my name and I’d be . . . S-O-L. My daughter, hair “unbrushed” for the last year, would eat creamed corn from a rusty can.

Today, I thank my wife for being a great mother, a partner in fighting cystic fibrosis, and the magician who brushes our daughter’s hair. Love, baby, love.

Let’s not overlook the wife – or girlfriend – and the mother and their importance and bravery in the fight against this menacing disease.

We’re talking about strong women who have answered the call with “There is nothing in life you can burden me with that I cannot handle – Nothing.” They are the hero of the movie who, when knocked to the dirt, gets up again, wipes away the blood, and asks, “Is that it? Is that your best punch?” as they crack their necks and go to town on the villain. And,unlike guys, they clean up the mess when they’re done.

They are inspiration; they are strength; they are the baddest cats on the planet and you’d best not mess with them, CF.

When I stand in the Colosseum staring at the hulking form of cystic fibrosis retreating, thinking I scared it away, it will be no surprise that it’s really afraid of my wife, chainsaw in hand, standing next to me. And next to her a mother in Texas, with a wound that won’t heal, waiting to unload a cannon of hurt; and next to them, mothers with CF and mothers with CF children ready to take a shot. The line is long, my friends. The line is really long.

Your day is coming, cystic fibrosis. Your day is coming. Do you hear them, CF? – these strong women.  They are going make sure your beating comes sooner rather than later. And this time there won’t be anything left to clean up.

Happy Mother’s Day.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

Renaming My CF Drugs

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It started with a puppy

Hello, Cystic Gal

When our then five-year-old daughter wanted to name our new lab puppy, we created a naming rule to weed out the names we couldn’t live with or inflict on the pup.

The naming rule: If we couldn’t stand at our front door and scream the name into the neighborhood without feeling embarrassed, the name was scratched.

Examples of names that didn’t make the cut: Cupcake! Creamsickle! Vanilla Latte! Banana Cream Pie! We laughed hard testing them, confirming to neighbors that we’re nutty, or least that I am.

Which brings me to CF drugs. Who names this stuff? Someone in Marketing obviously doesn’t understand what it’s like to take a medicine every day or every other month of your life. Or, at the very least, they don’t understand the psychology of the disease.

So, I’ve decided that a little renaming is in order.  Here we go.

Giving CF drug names some teeth
My wife once asked what drug I was doing and I answered, “I’m doing TOBI.” A small body shiver hit me as I realized how that might sound to the untrained ear. Not something I would want to yell from my front door.  Not to mention that our friend’s yellow lab was named Toby, and he couldn’t do much harm to bacteria.

We need drug names that sound tough. When I inhale or swallow a medicine, I expect it to go into my body and crush the last breath out of the bacteria. No more taking drugs with names created by nuns moonlighting as scientists. How about some muscle and weaponry?

Let the hellfire rain down on the cockroach Pa

Old name: TOBI. A name for a yellow lab.

New name: Armageddon Hellfire Mist. This drug name should be the equivalent of spraying RAID on a cockroach, then backing your monster truck over its carcass four or five times. If I’m going to invest 20 minutes twice a day breathing this stuff, I want it to be the end of existence for the cockroach known as Pseudomonas. I want this bacteria to face its worst nightmare – Armageddon – because this is a battle of good vs evil.

Old name: Colistin. A name a celebrity would give their kid.

New name: Lung-Jax. There’s no substitute for the scrubbing power of Ajax. I want my lungs shining like my sink and toilet do when my maid hasn’t been on a three-day bender of Mojitos and Manhattans. So shiny and new, the bacteria can see their reflection as they melt like the wicked witch in the Wizard of Oz.

Old name: Hypertonic Saline. This isn’t the worst name I’ve heard. I like the “hypertonic” part. Saline, not as much.

Love this stuff! Blast the mucus away

And Hyper-Sal? “I’m doing Hyper-Sal,” sounds like something a mafia wife might tell her friend over lunch.

New name: Hypertonic Jet Wash. Mythbusters placed an old school bus behind a 747 with its jet engines blasting. The “wash” from the engines blew the bus away like it was made of paper. That is what HJW does. Load up that old bus with bacteria and give them a ride they’ll never forget – right into a trash can on the wing of a paper towel.

Old name: Cayston. I want to tread lightly here because when I tested this drug I thought the nurse told me its name had a special meaning. Still, the name is a little too “prep school” for my taste. Let’s give Cayston a pet.

New name: CRR (Cayston’s Rabid Rottweiler) Unleash the attack dog with this drug. It chases down Pseudomonas aeruginosa and bites it in the ass.  “Oh, it’s just a doggy bite,” the bacterium says in its fake British accent, until the rabies start kicking in. No laughing then. And, no shot clinics in the lungs, either. Whose mouth is foaming now, bacteria scum.

Old name: Pulmozyme. I get it. The drug thins and loosens the mucus. Nice. I can work with that.

Clean-up hitter.

New name: Lobe Lube. This is like taking your 67 Mustang into Jiffy Lube for an oil change. Out with the crud, in with the new slippery oil.  Man, this baby purrs now. Not sure I’d take my new car here, but my beater, yes.

Old name: Xopenex: This sounds like something my crazy aunt calls her ex-husband when she’s pissed and lubed, which is most of the time.

Wedge those lungs open

New name: Crowbar. This has a double meaning. First, I want this drug to go in and wedge open my lungs, making way for the other drugs that follow.  Second, a crowbar is what my aunt used on her ex-husband to open his skull to the tune of 40 stitches when she caught him with Hyper-Sal’s wife. Good enough for her, good enough for me.

I’m feeling better already. Think of the marketing potential and packaging possibilities. Nice, huh?

Well, it’s time for me to go Crowbar my lungs open, flush them with a some Hypertonic Jet Wash, coat them with Lung Lube, then inhale a little Armageddon Hellfire Mist to kill the cockroaches that have been living large in my lungs.

I’ll get to the pills another day. I’m thinking Al Pacino in Scarface – Say “Hello” to my little friends, Cipro and Z-Pack.

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Monday Musings: The Right Stuff?

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[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 creativecommons.org/licenses

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.

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Ex-Celebrities, Anger, Perfect Genes, and Feeling Neutered by CF

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Photo courtesy of NASA

I was at my nephew’s little league game yesterday. Perfect day. But I was feeling a little off.

An ex-celebrity coached the opposing team. He was being a d**k and overly competitive and it bothered me.

I don’t think of myself as an angry person, but down deep there’s a ball of rage that bubbles to the surface for special occasions. And it’s not easy to control.

Here was this ex-celeb, the picture of perfect genes, tall, model good looks, who once kissed some of the top leading ladies in Hollywood, with his ex-celebrity wife, herself of perfect genes, making a fool of himself. Perhaps, it was jealously pure and simple that threatened to unleash my little sun of rage.

I wanted to confront this guy and get in a fight, or at least join the fray.

I wanted some magic CF power, almost Vulcan-like, to grab both sides of his face, hard, and show him how lucky he was to be who he is and have what he has. And to show him how infinitesimal in the scope of life a missed little league call is. A punch to the face would have felt good, too, followed by one to his stomach.

Had that happened, hemoptysis would have been everywhere, scaring the children and their parents. Imagine the mass chaos on the field with parents pouring from the stands to get their children out of harm’s way – the crazy celeb-hater spewing blood on the manicured sand and grass.

Cut to the last image of me on my knees on the pitcher’s mound alone with the invisible disease exposed and a Rorschach of blood in front of me.

Perhaps that is why I hate CF so much – the feeling of being a neutered male, different from the rest of the herd, a mutant. Or that CF has kept me from reaching my full potential as a man. Yes, I feel lucky to be here, to have lived this long. But some days it’s just not enough. I want to be normal, to stare at the face of another man, nose to nose, and have the other guy back down.

I want to be the one with perfectly formed bones, square jaw and cool hair.

Without the CF, would my anger still be there? Or, is CF the only thing that has kept me out of prison all of these years? I’m not sure. But I’d like to find out.

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The Power of Two – Coming Soon

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The Power of Two - Coming Soon

Check out this new documentary

I just watched an excellent trailer for a new documentary coming soon.

It’s called The Power of Two and its subject matter includes cystic fibrosis, different cultures, and my favorite subject of overcoming great odds in life.

I won’t say anything else other than the trailer hooked me. I’ll get my popcorn ready.

Here’s the link: http://www.thepoweroftwomovie.com/

Monday Musings: Malcolm Gladwell, rapid cognition and CF

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In his book Blink, Malcolm Gladwell explains the importance of thin slicing or rapid cognition in decision making. He states that these terms are not “gut instinct,” but rather an educated decision made quickly based on the conscious and unconscious minds. And, rapid cognition is usually more trustworthy when making decisions than an analyzed decision made over time.

What’s interesting is how Blink applies to battling cystic fibrosis.

One of my favorite books by one of my favorite authors.

What facts do we really have to go on with CF? We have our interpretation of the facts and others’ interpretation. Apologies to Mr. Gladwell, who can call it what he wants, but we need our CF “gut instinct” to help us make decisions.

Example: On cysticfibrosis.com last night, a mother of a CF child asked about the order of meds her clinic was recommending. I replied with my order and logic. A man replied with the opposite order. Who am I to tell him that pulmozyme before HTS doesn’t work as well as HTS before pulmozyme? He says it works best that way for him. Who is correct?

Or, jokingly, who is more correct?

We are given some tools (meds) by doctors with some guidance, and we choose some of our own, such as supplements. Many times, it’s up to us to determine which tools to apply and how to apply them based on our research, our experience and our gut.

The mother was questioning the clinic’s decision because her experience, or gut instinct, told her their decision was incorrect and less effective.

Now guess which group of professionals “thin slices” daily. They’re highlighted in the book – doctors.

Doctors need to make fast decisions. They interpret the evidence and what it tells them, then go with it, rarely second guessing. Bang. That’s it, patient diagnosed. Move on.

Have you ever experienced the moment with your CF doctor when you’re trying to decide whether you need to be admitted or not?  The decision is borderline, hovering, waiting to be made. Some signs point one way, some the other.

What tips the scale one direction or the other?

You sit there thinking, processing, clock ticking, looking at your doctor. Who blinks first? Your gut, or your doctor’s?

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Fox pays me a visit

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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.

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –

PFTs, Body Blows and Advice from the Fox

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Sometimes a CF punch doesn’t knock me down.  Sometimes its a good punch to the body and takes my breath away,  but I regroup.

That’s why I hate PFTs.

Today, at my post hemoptysis appointment, I took a punch. Not a terrible punch, but I felt it.  PFTs were down a bit but not terrible. Not enough to warrant a jail sentence.

The psychology is tough though: Can I regain the lost lung function?

What would the fox do?  I ask.  “Benzyl Isothiocyanates,” says the fox.

Oh, well. I’m still in the fight. That’s the good news. Not sure what I’m going to do about the hemoptysis in the long run. Got the “1% chance embolization can cut off blood supply to your spinal cord” speech.

Wet my pants and went home. Ate my broccoli and slaw and strategized my next punch.

“The Matrix” and Pulmonary Function Test (PFT) results

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I love “The Martix.”  The first film, not the sequels.  I remember looking over at my wife when the movie ended and we didn’t say a word; but our eyes said it all.  Holy s**t!

Yesterday, a CF blogger I just met online posted her PFT results from 1982 to 2006.  And I had a Matrix moment.

At the end of “The Matrix,” Neo’s sees the world in green code (picture to the right).  When I looked at the PFTs, I saw more than just numbers – I saw the code behind her life with CF.

I saw the story of a warrior – a mother – who has drawn a line in the sand she won’t let CF cross.  A woman battling over the decades to maintain her lung function, fighting for every percentage point and a life with her son.

There were 92 entries on the list and it’s not complete. Over 92 times she sat with a PFT tech or nurse and blew into a mouthpiece until her face turned red and her lungs were drained of air.

And, if you know PFTs, you know that you usually don’t blow once.  You blow three times on average, depending on your clinic and how long ago it was. (How many computer candles have you blown out in your lifetime?)

I had never thought of PFTs in this way before – that they tell our CF stories in code.  They reveal the low points in our lives when we wondered what we had done to lose so much lung function. (How did it happen? What did I do wrong?) They showcase our victories when new drugs were introduced or we exercised more or we found a supplement or treatment that helped us outfox the disease.

I wish I had a complete running record of my PFTs.  I know what they would show and it’s painful. It would show that I was hotheaded and made more mistakes than I did correct decisions.  That code would rip open old wounds.

I find it more comforting and motivating to look at others’ code and root them on.

What will our PFTs look like when a cure is found?  Like Neo at movie’s end, that will be our victory for years of hard fought battle. The code will no longer matter and we can go on with our lives.

Roll credits.