100th Blog Post – Thank you – See you in a week

The above video includes one of my favorite songs. If you like music while you read, please press play.

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To everyone who has visited and read my posts and the comments, I have the following words for you:

Thank you. Thank you, so much.

I started this blog to leave a record for my daughter detailing my fight against cystic fibrosis. It has evolved into something more.

Much younger here, she's everything to us.

I say this from my heart: this blog became better than I ever imagined thanks to you, my friends.

With your help, it has evolved into something I never expected – I got more back than I put in.

When I felt like quitting the blog, you kept me going. During my recent jail stay, you gave me the strength to find the humor to fight CF – to say, I may bend, but I will not break from CF’s cheap tricks and mind games.

And, most importantly, the lesson my daughter will take away from this blog will be greater than my words alone.

It will be a message of hope delivered by others.

My daughter will read the comments and learn more about the people who took the time to write them. She will discover that the heart of the blog lives there beyond my individual thoughts. It is greater than I, and tells the following story: one cannot fight cystic fibrosis alone – it takes a team of the finest minds and hearts, and the courage they share, to defeat this brutal, complicated disease.

I have work commitments this week. It’s the perfect opportunity to take a week off from writing and reflect on the next 100 posts. It’s my hope they’ll be even more rewarding and that together we will find new strength to crush CF until its life blood drains into the gutter, never to be heard from again. Hope is on the way and it carries a very big flail.

I reflected on the 99 previous posts that Fox and I wrote and tried to identify my favorite. One post kept coming to mind. And of course, it features you know who – she of Jimmy Choo shoes, and Pink Bunnies and all things soft – she with the ability to transform darkness to light, words to sweet-smelling daisies, and toads to handsome doctors – My friend, Cystic Gal. Here’s the link:

https://unknowncystic.wordpress.com/2010/04/23/cf-blog-throwdown-dude-versus-the-lady/

Stay well – Fight hard. See you in a week.

p.s. If you’re wondering about Fox, he is in a Las Vegas jail right now. Last night, at the Hard Rock Hotel, he punched The Who’s Roger Daltrey, who according to Fox, made a pass at Ginger. I think Fox can use a few days in the hole to reflect on his actions before I bail him out, don’t you?

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My Friend Nanos

Hello, on the last Saturday of June.

I am really cute. Read about my owner at Please Pass the Salt.

Yesterday, I was tweeting with my friend @nanosmakemepuke, who, BTW, has one my favorite Twitter names of all time. In the future, we may find out that actual nanos were doing more than just making us puke, but that is a story for another day.

I feel lucky to know Nanos online, as she’s smart, funny, insightful, and has the ability to look at things from a different angle – a skill I value.

She also started a very cool blog. Please take a look.

She and her husband Matt have a life in Texas and are two of the hippest cats I know. Her blog has a style all its own.

And if you have the time, please leave a comment [click on “notes” to do this]. You’ll get a cool answer back and a free coupon for a Chipotle burrito bowl. Just kidding about the coupon part, but she did teach me the meaning of the word “regulate.” And I can tell you that one day, I’m going to regulate cystic fibrosis.

http://pleasepassthesalt.tumblr.com/

From Please Pass the Salt:

From urbandictionary.com:

Regulate: To lay down the law. Begin controlling s@&$. Often by
physical force/restraint.

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Fox’s Communications Tips: Speaking to RTs

Grrrrrr,

Dreaming of Princesses

Fox here. I’m hung over and irritable because I loaned my nurses to a blogging buddy and he’s not returning my calls. I hope my team comes back in time for my midnight dose.

I’ve spent the day deep in thought about Unknown’s problems in the hole last week. I’ve boiled it down to communications, meaning crappy verbal skills on the part of Unknown.

So, I thought I might share a lesson I gave his highness on how to communicate better with RTs. Here are the role-plays I designed for him.

Lesson 1: “It’s all in the wrist”

RT gives you a med you don’t take

RT: Hi. I’ve got your Pulmozyme.
Fox: I’ve got your Pulmozyme, too.
RT: What?
Fox: Yeah, I got it right here.
[Fox sticks paw in pocket. Pulls paw out flipping the RT the bird]
Fox: See, here it is, and it says F U Pulmozyme on it.
RT: How dare you.
Fox: How dare you, SIR, for bringing me a medicine I don’t take.
RT: It’s in the chart.
Fox: That chart needs to go up the person’s ass who added Pulmozyme to it.
RT: There’s no need to speak like that.
Fox: Since when is “ass” a bad word?  Is it because there’s a chart sticking out of the ass? Does that make it bad? It’s because of the image it creates, isn’t it? Chart hanging out of ass, that sort of thing. Would it be better if the Pulmozyme was sticking out of someone’s ass?
RT: [leaving quickly] You’re crazy. I’m leaving.
Fox: You go ahead and do that. I’ll be here hyperventilating because you almost killed me with the wrong medicine.

Lesson 2, version A: “Liar Liar, pants on fire”

RT shows up late with your morning meds and you’re caught red-handed doing your own

RT: You’re already doing your meds?
Fox: Yep.
RT: Where did they come from?
Fox: [lying] The other RT brought them
RT: The other RT?
Fox: Yeah, the other one. He looked like you, but different. He was bald
RT: When was this? Bald?
Fox: Not too long ago. No, he had blonde hair.
RT: You said he was bald.
Fox: I was wrong. He had black hair.
RT: What? Did you get his name?
Fox: Whose name?
RT: The other RT.
Fox: What other RT?
RT: The one that just brought you the meds.
Fox: Oh, that one. I don’t know. I don’t work here. Don’t you guys know each other?
RT: I don’t know who it could be.
Fox: He had a limp.
RT: A limp? We don’t have anyone with a limp.
Fox: [holds the neb away from his mouth like poison] You have me worried now, man! This could be rat poison delivered by a bald guy with one leg. Who brought me these meds? Was it a real RT? Are these the correct meds? I’m feeling light-headed.
RT: It’s okay. No need to panic. I probably missed it in the chart.
Fox: Oh, okay. Yeah, it’s probably in the chart.
RT: I bet it’s in the chart.
Fox: Charts are never wrong. [crying] Would you mind leaving me alone now? This has been very stressful.
RT: Sure. Sorry about the confusion.
Fox: Okay. I probably won’t file a complaint this time.
RT: Thanks.
Fox: [stops crying] Do me a favor, would ya? On your way out, slide my beer keg against the wall. People keep bumping into it. Thanks. You’re the man.

Lesson 2, version B: “Message from a friend”

RT shows up late with your morning meds and you’re caught red-handed doing your own

RT: You’re already doing your meds?
Fox: No.
RT: What?
Fox: [throws the covers over his head and tries to hide]
RT: [pulls the covers off] You’re doing your meds. I see you.
Fox: No, I’m not. And you don’t see me.
RT: You’re not? But I’m talking to you?
Fox: I’m not and you’re not talking to me.
RT: What are you doing?
Fox: Being invisible.
RT: But you’re still inhaling meds.
Fox: You call them meds. I don’t.
RT: Aren’t they?
Fox: No, it’s beer.
RT: You’re inhaling beer?
Fox: Yep. Yes, I am.
RT: Are you kidding?
Fox: Nope. Would you like some? I’m seeing two of you right now.
RT: You can’t inhale beer.
Fox: I can’t. Sure tastes like Old Milwaukee to me.  Ring, ring, ring. Hold on, someone’s calling. [pretends to pick up and answer an imaginary phone with his paw] Hello, CG. Yes, the RT is right here. [to the RT] It’s Cystic Gal.
RT: Who?
Fox: Cystic Gal. And she has a message for you.
RT: What message?
Fox: She says, “Suck it, UPS driver. Suck it.” That’s classic, CG, Dude. What a mouth she’s got when she’s pissed. And she’s pissed at you, lucky fella. [laughs his fox ass off]

I'm CG's cat and I say "Meow it."

That’s it for tonight. These examples should help old Unknown communicate better the next time he blows a gasket.

Party like it’s your last.

Fox out.

Letter To My Daughter – 6/23/10

[Part two of a two-post blog. Here’s part one: https://unknowncystic.wordpress.com/2010/06/22/switzerland-crumbles-neutral-no-longer/]

Dearest Daughter of the future,

If the moon falls from the sky and pulverizes me, or Fox’s girlfriend accidentally mixes radiator fluid in the punch again, or CF takes its final swipe at me, probably on an airplane, please ask Mom to open the file on the computer named “blog post 062210.”

Please read it with her to make sure you do not live your life with a hole in it because I’m gone. I’ll be ticked if you do. I’m not telling you that you can’t be sad. You can. Just don’t let it go on too long. You have my complete blessing to have fun, enjoy life, be happy with what you have, and not be sad for what you don’t.

You have a life to live and a family who loves you. And, one day, you’ll have a mate who will wait on you hand and foot like you’re a queen, just like we, your parents, did when you were growing up.

There is one more very important point I want you to know: Thanks to you being here, existing, I lived a longer and happier life. And you helped me kick CF hard, right where it counts. That is a fact.

From the minute you were born, which finally happened because I made your mother eat PF Chang’s hot mustard that forced you out of your comfy womb house, I had new energy to do my treatments. I became obsessed with taking care of myself because I wanted to make sure I stayed around to see as much of the movie that is your life.

I blew into the flutter like a mad man, up to an hour at a time. My health insurance paid for a vest that I used every day. I never missed a treatment. I ate pounds of broccoli and cabbage every week. I looked for every advantage I could to outfox CF.

I owe my bonus time to you.

Every day I lived with you and your mother was a dream. I’m not sure your mother will say the same thing because sometimes she failed to see just how charming and funny I was every day. But you know the truth, I was.

Remember, always wear your helmet, honey.

I want to leave you with one last memory tonight that I never want you to forget: the times we rode our scooters around the hospital grounds, especially down the parking-garage floors like we were breaking the law, thinking the security guards would catch us at any moment. And the time you did a flying face plant when you thought you could ride through mud. PICC line in my arm, bacteria in my lungs – none of it mattered on those scooters. We had a blast.

You helped me give the middle finger to CF and the “thumbs up” to life.

For that alone, I will always be grateful to you. The rest was icing.

Take care of Mom.

Love,

Daddy

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Switzerland Crumbles – Neutral No Longer

[This is part one of a two-part blog posting]

Take a side, you crazy country

I so enjoyed my vacation in Switzerland . . .

A blogger’s recent post has upset me. And I’m not sure why I’m so upset because the blog’s author is someone I respect and who has really given back to the CF community with her brains, opinion, and drive to help others. I’ve read her comments over the years at cysticfibrosis.com. I’m a fan.

And yet, the following post got me heated.

http://noexcusesnoexcuses.blogspot.com/2010/06/families-with-missing-piece.html

A week later the post festers in my mind and won’t go away.

Here’s what bothers me: It feels like the title should really be – If you have CF, don’t have kids because you’ll cause them pain when you die. That’s the hidden message the commentary and the included WSJ article deliver to me. I’m not sure if that was the author’s intent, but it’s my interpretation of her words.

So, let me be clear with my position so there is no gray area: If you have CF and want children, and are able, have them. It’s your decision. That’s as “in a nutshell” and clear as I can be.

I’ll take any heat coming my way for the statement.

My brain for the last week

The blogger writes in the last line: “the focus on the decision needs to be all about the child.” It’s such a confounding statement. My wife and I had a child for ourselves, too, not just the child. I wanted a child so if something happens to me, my wife isn’t alone, though I’ve never shared that with my wife.

But we also had a child because we wanted to have fun and enjoy life as parents. And we put great care into the decision to ensure she will be raised well and by family if something happens to us.

In the scope of life and the unique make-up of families in today’s society, how different is the decision for CF parents to have kids? Should we have to contemplate worst-case scenarios any more than others? What about best-case scenarios?

There are more drugs on the way for CFers than at any time in the history of this disease. The care is the best it’s ever been.

What if someone decides not to have children after reading the post and then lives to 70? Regret like that tastes terrible.

The odds yesterday are not the odds tomorrow. Life changes. Hope arrives.

That’s not to say CF parents shouldn’t think about their situation. Anyone considering having kids should.

I can think of a whole lot of people without health issues who should rethink having kids if you look at potential risks to the child. And that population is larger by far than CF parents wanting to enjoy life while suffering from one of the worst diseases known to humankind. Or, should only a select few who have perfect, ideal lives have kids? How many parents would have kids if that were the case?

The WSJ article bothers me, too. It begins with a hypothetical question: “Would you give up a year of your life to have one more day with your late mother or father?” Hypothetical questions are the easiest to answer. Yet, only 57% answered yes to a softball of a question. Thankfully, 43% saw that the price was too high – one year for one day.

What if the choice had been real? How many would have really made the swap?

There’s a certain paradox to the situation discussed. Would the children who have lost parents decide not to be born? If the parents knew there was a chance they would die, would they have not had the children and would the children be okay with never existing? See, it gets confusing for me.

Life is painful. Who’s to say some of these kids wouldn’t have had the same problems with two parents. And who is to say once they weather the storm of losing a parent, their lives won’t eventually be fantastic. Why not ask them hypothetically if they’re rather not be alive if given the choice?

I’m grateful the blogger wrote the post. My heat has transformed to thankfulness. I will be more prepared to discuss this subject with my wife and educate her with what might happen to our daughter when I’m gone. And I can tell you that had I read the post before having our child, I would have chosen our same path without hesitation. The eight years my wife and I have spent with our daughter have been the best of our lives.

At this point, our Wii-playing, book-reading, Smarties-eating daughter would agree that being here, alive, is a great joy. I doubt she’d want us to go back in time and change our decision. And if something happens to me, she may suffer. But there is also the chance that like a Phoenix rising from the sorrow, she may channel that emotion into something great, whether it’s her love for her family and friends, or playing a wicked guitar to an audience at the Hollywood Bowl.

As long as she’s happy, I’m okay with anything she does.

To be continued . . .

Fox’s Adventures in Los Angeles – Concerts on the Green

Hello,

Fox here. Unknown is on my shit list again after yesterday’s “I’m lucky” post. I asked him if he wanted to write another one of those sugar fests while he’s coughing up a lung doing his treatments. Judging by the two birds he flipped and red face, he’s not feeling so happy-go-lucky right now. My turn to write a post.

I attend concerts because that’s the kind of thing I do. I grab my nurses and roll to where good music is playing.

Each week the Valley Cultural Center hosts a free concert in Woodland Hills. Desperado, an Eagles tribute band, played and rocked the house, and we danced like animals.

The band played one of my all-time favorite songs: “Hotel California.” Here is the Eagles’ original version on youtube.com. Feel free to play it while you look at the pictures. You’ll feel like you were hanging with us.

It was a packed house tonight, which meant I signed a lot of autographs.

Lots of people, great music and great fun

I seek out places where hunting is easy. This park has one of my favorite places to eat. As it reads on the side of the trailer, “All American Cooking.” That pig looks like he doesn’t turn away until his plate is cleared.

A truck full of meat. It doesn't get better than this, my friends.

Here’s my tri-tip sandwich. Meat and bun. Simple for a fox. Not too much fun for a vegetarian, but they do have grilled corn on the cob to chow down.

Juicy meat I didn't have to chase down and skin. Loving it.

This place has strange places to visit. You couldn’t pay me enough to go in the tiger’s mouth. Kids went in, but they didn’t come out.

You can consider yourself tri-tip for the tiger when you walk in its mouth.

The event got out of hand when a giant rat ran through the park. I chased him off.

Nothing creates havoc like a giant rat with a cheese belt

When I hang in public, I get attention. People don’t see many foxes. The cameras come out and autograph hounds run over to visit and talk. Some even sketch a picture of me. Here are two of my favorites of the night.

I love the taste of hen. It really does taste like chicken.

Here’s another one done by a young fan. She just sat there and stared at me like she’d never seen a fox before.

Fox is popular with young fans, too. They know I'm a gamer and hold the record in Super Mario.

Here I am. The most handsome of foxes.

I am more handsome than you are - by far. No comparison. And I'm 100 times better looking than Unknown. No need for a bag over my head. I'm foxy.

That’s my adventure in Los Angeles.

A quick shout out to Josh at Welcome to Joshland. He’ll know why. 🙂

Party like it’s your last.

Fox out.