Monthly Archives: December 2010

I was just thinking – National CF T-Shirt Day

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Here's a sample front view

Let’s have a national cystic fibrosis awareness day in which everyone fighting this disease wears a special CF T-shirt. If the idea plays out the way I think it might, one would wear a special CF T-shirt in public on a certain day and randomly see others wearing the same shirt. It’s all about that moment of solidarity with others in the fight who might cross paths without ever being aware of each other.

How many of us out there are involved in the fight against CF?

It would be fun to search for others wearing the shirt. We could post pictures online of some chance encounters. Of course, we might not be able to meet each other up close due to germs, but it would still be nice to know how many others are out there on a specified day.

It would take the help of the CF Foundation and other excellent organizations like sharktank.org, cysticlife.org,  BEF.org and cysticfibrosis.com to pull off a coordinated effort like this. CF bloggers could pitch in. Even CF clinics could join in the fun and promote the day. Everyone could come together for this one special promotion.

I'm sure someone can make a much better design. Just a thought starter for the back.

Someone would have to sell the limited edition shirt and everyone would have to communicate the day to wear the t-shirt, which would be best in summer (t-shirt weather). The nice thing about t-shirts is that they’re not that expensive. And all profits could go to the Foundation, sharktank, cysticlife, cysticfibrosis.com or whoever sells the shirts. I’d order at least three for my family and more for friends. The shirt would have to be colorful – yellow or orange or lime green. It needs to stand out.

Who knows what publicity it might generate with news media?

In my crazy mind it would be similar to something the artist Christo does when he wraps a bridge in colorful fabric or places gates in Central Park. It would be a living, breathing, moving display of the fight against cystic fibrosis. Oh, and let’s not forget our friends in England, Canada and other countries. We are one in the fight. And on one summer day in 2011, let’s see how large our army is. Am I crazy? Don’t answer that.

Happy Holidays

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I wish everyone the best of holidays. Thank you for your visits and comments, and I hope for only the best of health and happiness for each of you and your families.

Here are a few fun photos from our Christmas.

A couple of years ago, I pranked my 6-year-old daughter with a nutcracker trick. Each day in December, I left a new nutcracker in the house with a note on it. The note explained that the nutcrackers had chosen our house for a very special gathering during the holidays and my daughter should prepare for the arrival of the Nutcracker King.

The joke went well at first with my daughter buying into the festivities. That is until I wrote in one of the notes that the nutcrackers would be leaving after the holidays. This brought tears and ended the fun for her, as she didn’t want to see Hans and Franz, the king’s attendants and the ones I did the cute voices for, leave the house to return the next year. We had to agree that some nutcrackers would stay on after the holidays. And to this day, we have a few select nutcrackers hanging around our house year round.

Now most of the nutcrackers I bought hang out on our nutcracker tree below.

This year, my wife and daughter built a gingerbread house. It turned out pretty nice. They were excited because the kit included fondant, which is used on Food Network Challenges.

I wasn't allowed to help because I ate the ingredients

Here’s a picture of our Christmas tree. I used Hipstamatic on my wife’s iPhone and shot it “old school” style. They did a nice job and I supervised, which really made all of the difference. I’m an excellent couch supervisor, though my daughter barked at me to help. I did my tours of duty as a kid setting up a fake tree for my mom and helping to decorate it. Now that I think of it, I may have supervised the hanging of the ornaments back then, too.

 

Old-fashioned photos by Hipstamatic

Best of health and holidays to all.

“Me Time” Is Overrated

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My sense of isolation has increased over the years as this disease has worsened. During the past three months and the hemoptysis surprise parties I’ve had, I’ve felt more isolated. I have friends, but it’s hard to plan getting together. At times, when my lungs have gone south, it’s an effort to speak. Or, there are the times I just don’t feel well, which have increased. It’s harder to make an effort to hang out, and easier to stay home.

Life is like a postcard here in L.A.

Then add Los Angeles to the equation. It may seem strange to say that this expansive city of millions can feel isolating, but it can and does. Everything is spread out here, including my friends. And what may be a short drive in distance can take forever thanks to the worst traffic in the country. Visits across town take planning. You can’t just drop in on someone. Add to that the fact everyone is busier these days making ends meet and managing life. Even my healthy friends are tired.

The daily management of CF and time spent doing treatments each day interferes with going out or having friends over. I laugh when I fill out CF “quality of life” surveys. I have a great life, but the question asking if CF gets in the way of my doing stuff makes me want to ram my head against a wall. I need an answer choice of “F**k yes, it gets in my way. Are you kidding?” Clearly, someone with CF didn’t write that question because they’d already know the answer is yes.  Okay, maybe not for all CFers. I don’t want to make that assumption. I hope it doesn’t for everyone. Just place a permanent check mark in my survey, please.

So, it’s Christmastime and I’m lucky. But I would have loved to have had a holiday party this season, which I say we’re going to do each year, but we didn’t yet again. Life with CF got in the way. The blood came after Thanksgiving and it was “all hands on deck” mode to maintain life as we know it. Now I’m on blood watch, as the streaks have returned and it’s anyone’s guess when my lung pops again. Can you say “fourth embolization coming up?”

Life is good. Yet, CF can make it feel like normal life is going on while I sit at the computer with a nebulizer in my mouth. That’s the “me time” I’d happily exchange for “hanging out with friends” time.

Just around the corner to the light of day

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Can one have a mid-life crisis with CF? Many years ago, no one with CF lived long enough to have one. And clearly, barring any miracle of science and new lungs, I’ve passed my midlife point. Does “late-life crisis” sound more accurate?

Whatever I’m having is a realization that the days ahead of me are fewer in number compared to the days behind me. It’s causing me to reflect upon my past, the mistakes I’ve made, and what I cannot do anymore – the doors closed to me. It’s about quality of life, how to hold on to what I have – my job and a life of not allowing CF to overwhelm me – for as long as I can. And I wonder: Is there still time for me to create something spectacular in my life?

But the disease is playing by its own rules these days and my life as I know it is similar to holding two handfuls of sand in the wind. Everything is temporary, but I’d rather CF not speed up the process.

I once heard a parent of a CFer speak at a golf tournament fundraiser. He spoke about how he wanted to see his daughter grow up to be 18, to graduate high school. That was it. If he could just have that he would be happy. But when she reached 18 he wanted more. And at 21, he wanted more. And so on. I can relate. I never expected to be here this long. And I set my own age goals in life. Now I set them by my daughter’s clock, to live to see her graduate high school. But now I fear that may be too aggressive. It’s 10 years out. Should I be thinking in shorter chunks of time?

And then there is that hurdle of blood I have to jump.

The current unpredictability of the bleeding is a bitch. I’m gun shy now and almost afraid to write about it. Each cough feels like it’s going to be blood and send me back to hell. I know it’ll return; the doctors missed the bleeder. I just want to make it two more weeks while my daughter is on vacation and we can enjoy the holidays. Then, I can bleed. But how can I function with this time bomb ticking? What if I’m with my daughter in a public place and it breaks loose?

I just had streaking. Can I make it through tonight?

Two more weeks. It seems like such a long time. I don’t want to speed it up because it’s vacation. However, I look forward to the pressure being released if I do make it. Then, I’ll probably want one more week and another and another after that. Isn’t that the way it always is?

Shallow thoughts from an idiot

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I thought I’d do more. Be more. Help others. Be more successful.

All in all, when I look back on my life, I feel like I failed. I’m not sure I’d use the word failure, but I might be somewhere close to that. It feels like it.

I can think of plenty of excuses. I won’t list them, as I tell my daughter we are responsible for our own actions. I am responsible for mine. Somehow time went by and I didn’t do what I thought I’d do – amount to what I thought I’d amount to. Not only that, I never took the risks I should have taken. I was so afraid of failure, of making mistakes, of what other people thought of me. It paralyzed me. And I think that lack of taking risks didn’t give me the payoff I probably needed to feel like a success – to be someone that mattered.

Over the years, there were successes. I went back to college and graduated with honors. That was my Everest of self-esteem climbed and no one can take it away from me. I married a brave woman with a heart of gold and we have a daughter we love. We’re doing our best not to screw her up, but it’s not easy most days. Where’s the 365-day calendar telling you how do succeed in raising a child?

Though I have had successes, my expectations were high. I wish I could do it again, but there are no do-overs. I wish I could  say things I’ve said differently, but there is no way to take them back. I wish I had had better relationships earlier in my life and maintained them, but that’s a life lesson I learned late. I wish I didn’t do a lot of the things I did, but I can’t undo them, only try to make up for them.

I wish I didn’t feel like a misfit in a world of normal people who get it.

I have lots of wishes. And I wonder what my life would have been like had I not been born with cystic fibrosis. I wish I could watch the movie of what my life would have been without it. And I fantasize that if I had one wish I would pass up my desire to see my life without the disease. I’d use that wish to cure the disease for everyone with it.

And that’s where my pain comes from. I thought I’d have the life where I’d have the chance for heroic acts like that, to affect a great number of people in a positive way. Oh, well, I’m still the luckiest guy in the room and I have no reason to cry about anything. Life is good. I have to admit it would be better without hemoptysis, but this too shall pass one way or another.

Saturday Funhouse – Fox Returns with Inventions

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Ladies and gentlemen,

I am one handsome hunk of fox

Fox here. I’m back. Did you miss me? If you didn’t, you can kiss my furry butt. I’m Fox and my middle name is “polarizing.” There is no middle ground with me. So, for those who love me, keep reading. The rest of you? Well, you can all F-F-F-Fade away.

Now I know what you’re thinking: Where have you been, Fox? The answer you may be expecting is “I’ve been partying,” which is a good answer, but not correct. You see there’s a side of me most of you don’t know about. I’m an inventor. I have patents for all kinds of inventions. And for the last three months, I’ve been holed up on an island in the south Pacific with my assistants Malorie and Julie, who are both top-notch engineers and help with the math I chose to ignore back in my school days (party or math class? Not a hard choice.)

The three of us have been working on inventions to make the lives of those fighting cystic fibrosis easier, even that jerk-off bum of a CFer named Unknown, whiny loser that he is.  A little blood and he runs to the hospital. You didn’t see me passed out in a hospital bed after my four-day bender with Keith Richards had me spitting up blood in a bathroom in the south of France. Some of us can take it. But I digress.

During the past four months, my brainy assistants and I have come up with four excellent inventions. I’m here today to share them with you. They’ll be available soon to buy, but I’m giving you a preview because that’s the kind of fox I am – generous and sober with my 1-day AA chip, which I’m going to bet on red to win.

Pull back the curtain, please.

Stay out of my room. You're covered in Pa.

Bacteria-finder sunglasses. Wear these glasses and you can see all bacteria harmful to CFers. Pseudomonas shows up in orange. Cepacia in red. MRSA in Yellow. You name the bacteria, we have a color for it. Friendly bacteria show up in blue shades. These are great to wear in the hospital. You’ll look like a rock star to doctors and nurses, while knowing who’s been naughty and nice when it comes to washing their hands.  “Come back when you learn to use soap and water,” you’ll say to the nasty Respiratory Therapist fresh from the bathroom and covered in C-Diff. He’ll stare with a sad-dog grin as you bust his ass for spreading germs and almost giving you the world’s most dangerous case of the squirts.

Am I still alive? iPad/iPhone app. Ever wonder what your temperature is, your O2 sats, blood pressure, heart rate, and heart rhythm are — all at once? Simply download the “WTF is going on in my body” app from Apple and you’ll know in the time it takes you to set down your mojito grande and place two thumbs on your iPad or iPhone. The CF version of the app also tells you if your lung has collapsed or if you’re just a big hypochondriac like Unknown is. And as a bonus, the Fox version has a built-in breathalyzer. Just place your mouth on your iDevice and blow (just the fact you’d do that tells you that you’ve had enough to drink).

Ring of hemoptysis fire

Dragon Gum. Nothing worse than coughing up blood. It’s a drag unlike any other. Chew this new gum and blood turns to fire. It’s quite a trick and we’re still working out the kinks, like timing the combustion of when the blood turns to flame after contacting the gum. I had a hard time kissing my PhD’s for a week after I burned my mouth on the first stick. Plus, my mouth smelled like dead flesh, making me off-limits to the opposite sex. But when this sweet tasting gum works, hello, King of the Dragon Colony. You’ll be spitting fire balls across the room. Take that cystic fuckbrosis.

IV fluid Clothing Pads. If you’ve ever been on home IVs and used IV balls, then you know it’s a pain to wedge it under your shirt by your shoulder while you’re infusing it. Hey there, Jr. Hunchback. We have a solution to solve the IV geek look – IV Bra Pads for the ladies and IV Speedos for the men. Now instead of IVs making you look like a geek, you’ll look like a Goddess or God with amazing physical gifts. And you won’t mind when the zosyn dose runs three hours. That’s three hours you’re eye candy for the opposite sex. “Why is there a line running from your bathing suit to your arm?”

I’m glad to be back and contributing to the CF community again. No need to fill my comment box with Thank You notes. I know you love me and what I do. But, hey, if you have to leave a love note, it won’t hurt me. I am, after all, a sensitive Fox who only wants to fill the world with love and happiness. Or beer and Vicodin chasers. I forget.

Party like it’s your last.

Fox out.

In the Cement Mixer

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[adult language and anger warning]

It feels like someone, I mean CF, threw me in the back of an empty cement mixer and turned up the rotation speed to high. Then, as if that wasn’t enough, someone, I still mean CF, threw rocks in the mixer with me. The noise alone hurts my ears and the rocks cause bruising and welts. Then, as if that isn’t enough to cause pain, someone, you know who I mean, adds broken glass to the mixer. The glass cuts my skin and I start bleeding.

Life with CF - some days

Meanwhile, the cement mixer keeps turning and turning and the rocks keep banging against me and the sides of the barrel. The glass keeps cutting.

Then someone pours salt into the mixer, which makes my cuts from the glass burn.

All in all, this is what CF has felt like lately. First, the bleeding two months ago, two embolizations and 20 days in solitary. Fuck you, CF. Then more bleeding the day after Thanksgiving to show me who is really in charge – it’s not the doctors who perform embolizations – and eight more days in the hospital. Fuck you, CF. The hospital kicked me around too. A blown IV puffed up my left hand and I now have a two-inch vein made of rock. During the PICC line procedure my heart went nuts and a doctor actually had to come to the room. When someone was drawing blood, they hit a nerve and now I have nerve pain in my forearm. Then, one day out of the hospital I caught a virus and my white cell count shot up and set back my progress with the IVs. That’s the nutshell version.

Do I need to repeat tonight’s mantra? I think I do – Fuck you, CF, fuck you, because I’m still the luckiest guy in the world.

A Tale of Two Hands

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To the untrained eye, my hands in the following photograph may not seem very different – each has an IV in it. However, to me, this picture represents the two types of experiences one can have in the hospital: excellent and crappy. And so much of that experience comes down to the people who work there and their talent and skill – or lack of one or both.

Which would you prefer?

Let’s start with the image on the left, which is my right hand. This is an example of a beautiful IV insertion with its stat lock and white tape and lack of excess tape. Everything is positioned perfectly. All in all, an excellent job.

The image on the right, my left hand, has no stat lock and looks like something I might do if I had the mind to insert my own IV, which I think I could do if the world was coming to an end and my life depended on it. I wouldn’t like it, but I could do it, though I might need the help of someone’s finger to stop the bleeding when I pulled the needle out. Look at the massive amount of tape used to keep the line in place because the thin white tape and stat lock weren’t used. I lost a lot of hair when we removed it.

Now here’s a question for you: Which site went bad and caused my hand to swell up and turn red? Easy answer isn’t it? I’ve been elevating my left hand for the past week to get the swelling down. The vein is rock hard above and below the insertion site. And it hurts. My medical diagnosis is Puffer Fish Hand.

This distinction between medical excellence and crumminess doesn’t stop at IV sites. It happens daily in the hospital with tests, procedures, and doctors. And for someone who stays in a hospital once in their lifetime, then the IV site on the right might not make much difference in the long run. However, I’ve stayed at the hospital four times this year and spent almost a month and a half there. The difference in the two types of care does matter because I’m exposed to more of these swings in quality the longer I’m there. They add up. And many result in more than a fat, tender hand.

Worst of all, not every difference in care can be photographed. The ones that can’t be seen scare me the most.

Star Date: 120210 – I’m not really here

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It’s day five in the zoo. I’ve been moved from the step-down floor, with its myriad of wires attached to my body and slot machine heart monitor ringing JACKPOT at four in the morning, to the hospital’s CF wing, which makes it sound more exotic than it is. But I am excited to be here and out of the monitored room.

My new room has some choice furniture, including a fold-out sleeping chair and wood chair I can use as a work chair. The rolling table has a pull-out section, which I’m using right now as a workstation. In the previous room I had to sit at the edge of the couch chair to type on my iPad or laptop. It’s amazing how a piece of plastic with fake wood covering can make all the difference. The pull out part is something I missed on previous visits.

The blood has stopped and so far no plans for an embolization. I believe the blood will be back in the weeks when I’m out. I don’t think they caught the correct bleeder. They do and believe this is a new one. Let’s agree to disagree. It hasn’t stopped me from pushing their buttons a little about the fact I’m in again for bleeding. However, they are sympathetic.

Before the visit two months ago, I wasn’t multi-drug resistant. Now I am. Did I pick up something in my 20-day stretch? Who will ever know. I need a rubber suit and mask for all of my stays from this point on – and David Blane’s ability to withstand torture over stretches of time.

I’m on a triple cocktail of cipro, tobra and zosyn. Yum. They infuse zosyn for three hours now. Three f**king hours. I’m on IVs all the damn time. They’ll kick me loose soon to do them at home. I have to admit, three will be a chore. I’m not sure which is worse, the three antibiotics or staying in the hospital. The evening doses are the hardest at home. I like the nurse coming in at night trying not to wake me and giving me a gentle kiss on the cheek to help me sleep.

The hospital has gone Chinese Government crazy with web access and now blocks a ton of sites and most blogs, including mine. I’m using the iPad WP app to get around the censors.

This stint has had its share of mishaps. First, my left hand is swollen and hurts a lot because the IV site went bad. The site looked like I had inserted it when compared to the new site on my right hand, a proper insertion. I took a picture for a future post.

The PICC line placement didn’t go well. It got stuck at the critical juncture of going up or down – down is the correct path. All of sudden I couldn’t breathe and my heart went lottery-winner crazy mad. Luckily, I was on a monitor and the nurse came in and they watched over me. Even after the procedure, which resulted in a mid-line and will lead to me getting a port, my heart wouldn’t settle down because of atrial fibrillation. Bring on the EKG and today’s heart echo test.

One bonus of the failed PICC was a vascular scan for clots. I know the woman who does them after many scans in the past for a clot in my neck. I let her train on me. So, she gave me a gel bath and scanned me with her wand, and no clot – yet.

I told a good friend that CF is not just about surviving CF. It’s also about surviving hospital stays. Bad stuff happens here. You leave with something you didn’t have when you came in. Or they beat the living daylights out of you with tests and procedures. This is a game of Survivor without a safety net.

During this visit and the last few, I find myself escaping into more entertainment – movies and video games – than reality like blogging and reading. I feel like Sigourney Weaver in “Aliens” walking into the middle of dozens of Alien eggs. Luckily, she had a flame-thrower with grenades. I don’t. So, I’m choosing to ignore as much of my surroundings as possible because I know all of this is a bad dream and I’ll wake up at home soon.

(Typed on my iPad. Please excuse typos.)