Fox designs a line of hospital shirts

You can't keep a good fox down.

Fox here. I’m back. And better than ever. I spent the summer in Monaco with some of my Hollywood friends. I’d love to write about my adventures, but I don’t remember a lot of what happened. I do remember waking up face down on the water bed most afternoons, sometimes wearing the dress of the woman next to me. Crazy fox fun.

The entire summer wasn’t a complete inebriated waste of time. I came up with an cool idea for Unknown – a line of hospital t-shirts. Here’s what I’ve come up with so far. What do you think? A different one for each day he’s in the hospital next time?

Party like it’s your last.

Fox out.

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California Dreaming

I was sitting at the dining room table yesterday morning blowing into my flutter when I heard screaming out on the street. The type where you stop what you’re doing to listen again. Is it kids? Something else? Definitely something else when I heard the second scream. I walked out the back door and looked over the fence and saw a woman who lives a few houses away, her face red, blotchy and wet from crying. Someone stole from her. Money and a computer, she claimed. She had her children taken away not long ago, too. Another neighbor was helping her. Sometimes people do scream in pain like in the movies. Yes, they do. And it wasn’t pleasant to watch. So I didn’t and went back in the house.

Life in the big city

I was pulling out of the gas station the other day when a man driving in stopped next to me so our windows were facing each other, his vehicle’s rear end sticking out in traffic, a magnet for honking horns, which irritated me. Then he asked me for two bucks for oil. Oil? Who buys oil anymore at a gas station with a market in it? Do they sell oil? Or did he mean gas? And asking me while we’re in our cars? I didn’t say anything to him. Not a word. I shook my head and drove off.

The local Barnes and Noble has become a hot spot for begging. And I usually give in. Hand the person a buck if they have a good story. Once it was a young girl who looked like she lived in Topanga Canyon. She wore feather earrings and a leather vest with fringe, like she might be a healer or hippie time traveler. She needed money to buy gas to get home. Do time machines run on fossil fuel? I didn’t ask. I gave her five bucks. She was someone’s daughter and mine was standing next to me. There have been others asking for money. More in the last year than in the prior 20 or so.

The lawns in my neighborhood look terrible. We have watering restrictions this summer. And LA DWP raised rates. But that’s not the whole story. Limited watering causes brown spots. Some lawns in my neighborhood haven’t been watered at all. Water isn’t cheap. Neither is electricity. The combo bill is a killer, as we live in a desert with most summer days over 100 degrees, though this summer has been cool. Many have chosen to save money and let their grass die. Other lawns are full of tall weeds where neighbors have decided not to water and mow. Or they’ve abandoned the house. One neighbor’s lawn is gone. It’s dirt. Just dirt. My lawn looks more green than brown and I water it on the days I’m allowed. But would I if I were unemployed or about to lose my house? I doubt I would.

Just a few years ago, large metal trash bins for remodeling littered the streets of my neighborhood. But those bins are long gone now. And what they left in their wake isn’t pretty.

Life at 26,000 feet

I’m not going to live forever. That’s my big revelation for the night. But it’s true. And it has taken me a great deal of time to realize this. I’m not.

I think of my age, 48, cystic fibrosis, and past events. Two collapsed lungs and the small scars on my chest from the chest tubes. A skin cancer removed that left a scar like a bullet hole on my chest because the Vest pulled the stitches apart. A blood clot in my neck that will never go away and required a year’s worth of shots in my stomach to prove its permanence. It too has left a mark on my chest, though this one is different from the penetration scars. Blue veins zig zag to create new pathways for blood flow and look like a map of highways across the USA. So my doctor says, the reason they’re there, not what they look like. What I know is that when I take my shirt off there is a story – not all CF scarring is invisible to the human eye.

And there are the hospitalizations. And the episodes of hemoptysis and bouts of C diff. And my irregular heartbeat and mild pulmonary hypertension. And the fact I’ve reached an age that kills healthy people. Cancer, heart attacks, strokes, bad eggs. You name it.

But I need to live 10 more years, to see my daughter graduate high school. That’s my goal. To see her graduate. That was my mother’s goal, to see me graduate high school. She had it easy thanks to my set of defective genes. But now I have my goal and I look out at 10 years and think that is a long time to go and a hard road to travel. How many hospitalizations will there be? 20? 30? What unexpected events will rock me? How many collapsed lungs and how much hemostysis?

I love this mountain

How can I even have the nerve to tempt fate and think that I could make it another 10 years with what life and cystic fibrosis have in store for me? I might as well climb Mt. Everest. Which goal has a better chance of happening? Well, obviously, I can’t climb, so I guess that’s an easy one to answer. But just surviving 10 more years is my mountain to climb, my impossible dream. I may not make it past next month with what’s brewing inside my guts right now.

The question I’ve been spending a lot of time thinking about lately is how I am going to spend the remaining seconds, minutes and hours I have left. I won’t presume to think that I have days left. I’ve learned how the karma of this disease works. Pride and hope and ego get crushed fast and hard. If I just string some of these seconds together, perhaps I’ll get a day. If I’m lucky.

Tonight, denial no longer protecting me, I realize I’m standing at 26,000 feet above sea level in what climbers call the death zone. It’s one step at a time now. It will be a victory when I wake up tomorrow morning. That’s how I’m going to look at it from this point forward.

Random Thoughts on a Bad Day

Oh, man. Three good days in a row got spoiled big time today. Must have been the citrus sorbet last night. Who knows? Something inside me goes south in a hurry and in a big way. And it can only be bad things and internal damage to my digestive tract and/or colon. It’s one of those times when I really don’t want to know the answer but I want to get well. Getting old when you’re sick can be a drag.

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I'd like a shot of HFCS straight up, Bartender. Hold the sugar.

I was thinking about high-fructose corn syrup tonight. Who believed this substance was a good idea? Someone who one day thought “sugar isn’t sweet enough – what if I created something sweeter than sugar and harder to digest?” Yeah, genius, that’s just great. Improve upon nature. Go ahead and try.

I can eat sugar, but HFCS makes me feel bad. I’m not sure why, but it does. And it raises my glucose levels higher than sugar. Still, I want to invent Super HFCS. This would be even sweeter than regular HFCS. It would be so sweet that just the smell of it would raise your blood sugar 50 points. And a spoonful would make you pass out. And if you forgot to brush your teeth at night after eating it, you’d wake up with holes in your teeth. Yeah, that’s right, I’m going to make Super HFCS. And believe it or not, people will buy it because people love sweet stuff.

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Another random thought for the day: Doctors will let you suffer if they think you’re getting better. Any sign of improvement gives them an excuse to do nothing. Here’s how a conversation might go:

Patient: Doctor, I’m feeling bad. Today, I was rolled up into a little ball because of the stomach pain. I cried out for lightning to strike me and put me out of my misery. Help.

Doctor: But you had three good days prior to that, right?

Patient: Yeah?

Doctor: Well, then you’re improving. Today’s just a minor setback. Overall, you’re improving.

Patient: But at one point my stomach ripped open and I had to push all of my guts back in. I’m not sure I put them back in the correct places.

Doctor: I’m sure you put the puzzle back together just fine. You’re trending in the right direction. Call me in two weeks.

Patient: Two weeks?

Doctor: Yep. You’re getting better. Talk to you then.

Patient: [throws the phone to the ground and jumps on it until it’s pulverized into plastic dust]

If you want your doctor to help you, never mention you’ve shown improvement of any kind. Otherwise, you’ll be left to suffer and die.

Stay well.

Day 22 of c diff

On day 22 of c diff and stomach problems, and day 17 of vanco, I have no words to describe the fun. I find it almost unbelievable – an odyssey of trying to figure out what to eat and not eat, and which probiotics work best. Sometimes I am stable only to be derailed by eating the wrong food. Then I go into a tailspin.

I would like to steal one of those tiny cameras you swallow that take video of your digestive system from start to finish. Either that or move to Texas A&M and have them install a fistula in my stomach – like a cow. I prefer option 1.

What I am thinking at this very moment

Do you feel lucky, punk?

[adult language]

I just want cystic fibrosis gone, exorcised from my body like an evil spirit, where it would hang in the air and I’d shoot it with the most powerful handgun in the world, the .44 magnum. So says Dirty Harry. And I believe him.

I don’t want to keep looking up medical information when I’m sick, thinking I have a medical degree and can diagnose myself on a web site. Don’t all diseases share most of the same symptoms? How many symptoms can there be?

I have everything – every disease known to man and womankind. The only question is which one is bothering me today. Fuck symptom finder. I have them all damn it.

Why can’t I take a probe like the one you stick in a turkey on Thanksgiving and jab it in my thigh and find out what’s wrong with me? And why do I know that if I gave the probe’s readout or report to two doctors, I would get two completely different diagnoses and they might both be wrong. Where’s the third doctor when you need him? On a golf course somewhere, no doubt, or on his yacht or private jet or on the moon, drinking lunar mohitos. Fuck them all. Scratch that. Fuck the ones who suck. Praise and worship the rest. They’re good people.

That’s what I’m thinking at this very moment.

Stealing a Post from Dr. Nanos

I just read Dr. Nanos’s new post at http://pleasepassthesalt.tumblr.com/post/984144678/the-perfect-day.

Awesome. In fact, so awesome, I’m stealing the idea for one of my own.

The Perfect Day

If I woke up tomorrow and didn’t have cystic fibrosis, I would . . .

smile like the joker and not have to put on my vest or neb xopenex and two hypertonic salines at 7:00 a.m., each morning for the rest of my life.

be able to skip sitting at the dining room table using the flutter until I coughed up a minimum of six more secretions after I finished the hypertonic saline.

feel better and eat three McGriddles for breakfast.

buy one of those unlimited Jet Blue tickets and visit some Twitter friends across the country. Chipotle anyone? Then I’d pack the family and head over to England and visit a few friends there and watch West Ham United get their asses kicked. But it would still be great because I’d convince my good friend to storm the field with me and cause a riot, as it doesn’t take much to get English soccer fans riled up. I’d end up in jail and not have to ask the jailer if they had a portable nebulizer I could use. Then I’d head down to Torquay, England and listen to a friend spin some vinyl and get drunk until I woke up face down in some cottage with magic elves, who would carry me back to the hotel, where I’d throw up all over the bathroom, ticking off my wife and daughter, who would ask for a new room, but still love me the next day.

travel more on business, which I don’t anymore because of my health and the fact I have to haul so much extra crap with me and fear ending up in a hospital in another state or country.

not do my mid-afternoon and late evening treatments and get to bed before midnight each night.

not boil my six nebs, flutter, and eFlow nebs.

play tennis and plan ski trips and ride my bike until I passed out or found the place where cows have holes in them.

do more with my friends because I’d feel a whole lot better and be able to plan ahead with confidence.

kill all of my enemies. Hmm, maybe not. Perhaps, I would grant them immunity. Some of them. You know who you are, MoFo’s.

go to jail for taking a 3-iron to the car of the guy who threw a cigarette butt out of his window while sitting at the McDonald’s drive thru.

not cough up blood or worry about coughing up blood.

show my wife what it’s like not to have an ill husband.

fly to Denver and watch a Broncos game with my daughter.

move somewhere remote where they have lots of trees and rain in the summer. Somewhere there’s no CF clinic. We could live anywhere. Anywhere.

get more than six hours of sleep each night.

blog about Dairy Queen, not CF.

take the bag off my head.

spend a fortune on plastic surgery.

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