Tag Archives: fighting cf

Decision making made harder

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Cystic fibrosis has screwed up my ability to make decisions. I was wondering why I’ve taken two months to decide on a used car – haven’t decided yet – when I realized it’s CF’s fault. Obviously, I can blame the disease for many things, which I’ve done on this blog, with coughing up blood being the obvious winner. But “decision making” surprised me when I realized what was behind the agony I feel making important decisions in life. I didn’t always have this problem.

Over the years, I’ve had to agonize over every decision related to CF I’ve ever made. Which doctor to see. Which hospital to go to. Whether I should go on IVs or not. How long to stay on IVs. Whether to call the doctor or not. Take the oral antibiotics or not. And there’s the classic and grizzly bear of all decisions: Should I go to the ER or not?

To have this disease is to live a life of having to make what may be life-altering decisions. Decisions born from CF have more riding on them. They are not the same as picking a paint color or a restaurant for dinner. When you’re looking to gain any edge you can, a wrong decision feels deadly and heart-breaking.

And wrong decisions don’t go away. They hang around in your subconscious until it’s time to make another important decision and you remember the last time you had to make a decision and how you screwed it up in a big way. Bad decisions are like thrown boomerangs you forgot about until they whack you in the back of the head.

I find that this problem has bled over into my normal course-of-life decisions. I analyze everything to the point I can’t decide one way or another. This damn car. What should I buy? How much should I spend? Private party or dealership?

I fear a bad decision more than I fear the reaper, giving the Blue Öyster Cult song new meaning. And I probably need decision-making therapy. If only I could . . .

[No decisions were harmed, or made, in the writing of this post]

Carry the Load, Crybaby

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If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.

So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.

And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)

I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.

This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.

I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.

Ocean waves of despair

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[I apologize in advance for this post. I had to get it out and off my chest so I can move on to better days.]

I’ve been struggling for days trying to describe a certain funk I’m experiencing. As with any new year, it’s a time to look out on the coming 12 months and think about what’s ahead. And that’s what started what I like to call waves of overwhelming despair. I’ve been unable to escape them.

One after another, they arrive without a break in sight

My lung function recently dropped from 65% to 55% after two embolizations and two hospitalizations. I did a good job ignoring it over the holidays as I concentrated my energies on being happy by not coughing up blood. But the cold hard slap of coming back to work this week combined with the fact I can’t breathe as well has delivered a great sense of hopelessness that I will not be able to maintain my life as I know it. What does that mean for the coming year? How many hospitalizations? How many times will I have to tell them at work I’m in the hospital and go through the process to be allowed to work while locked up? At what point will I not be able to continue this crazy game?

I’m lucky to have a great job and one which allows me to work with cystic fibrosis. I’m been doing it for over 10 years but would have worked my way up the food chain to new challenges, or a new company, in normal circumstances. Now the work has become a bit stale and I’m going to have to look for ways to change that and make it more exciting and less of a grind. However, with the clock ticking and my days numbered, a little voice in my head screams out each time I spend a minute of my remaining time writing a pointless email or playing the corporate game of going with the flow. The combustion created by the opposing forces of survival in the real world and the fantasy of making every moment count for something has created internal conflict. My patience for meaningless tasks has grown paper-thin. And one edge of that paper is on fire.

To make matters worse, the mental tools I use to fend off these black moments have failed. Yes, I am lucky. Yes, I have lived past all expectations with a brutal disease. Yes, others have not and I need to cherish each day. However, I want more. I want it all. And I know I can’t have it. I don’t just want it for me. I want it for my wife and I want it for my daughter and feel bad I haven’t given them the storybook life they deserve. And I can tell you that without those two anchors I’m not sure I’d escape some of the more challenging emotions of feeling like life is crumbling or a fear of the future.

Worst of all, I know I have no right to the emotion of despair. I have no right to whine about it. Yet, I can’t help but feel it at times. And that in itself makes me upset. I should be able to look at the big picture of CF and remember those who haven’t been so lucky and just keep my mind calm and my mouth shut. Perhaps this post will help me purge it and get my tools working again. My mantra: I am lucky. I have been given so much. One day at a time. The future will be what it will be.

I apologize for these thoughts and ask you to bear with me as I pick myself up from my momentary weakness and stop feeling sorry for myself. Someone toss me a towel, this water’s cold. It’s time to get out.

Two weeks living like a Zooble

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I’m happy because 2010 didn’t end with a hospitalization due to coughing up blood. Instead, I spent the two weeks with my daughter. I wish I could say that we got a lot done or did something important like discover a cure for cystic fibrosis while playing with Zoobles in our living room, but we didn’t, though I did make sure Zoobleland is CF-free. All of the little critters are healthy. There’s something to be said for being able to turn yourself into a protective ball when needed. This magic power allows Zoobles to escape all illness and evil in the world. I wish I could do the same.

The damn Zoobles had a party and drank my Cayston, which is like 80 proof alcohol to them.

So, when we weren’t playing with little plastic toys made in China, the two of us spent a lot of time being potatoes, or slow-moving potatoes, which one might call turtles. We played Donkey Kong Wii and did some shopping. We looked for a new pre-owned car, which was a major pain in the ass and a task that is still unfinished. Thinking back on the time now, I’m not sure where it went or exactly what we did to fill every moment. But it passed, and it passed without going to the hospital.

Though time went by fast, it wasn’t stress-free. I had plenty of blood streaks to remind me it was there, waiting, lurking, ready to explode without warning. But thanks to the miracle of Cayston and three treatments a day, I escaped the hospital. I’m so lucky. Have I mentioned that before?

I have a clinic appointment this week. Though I’m feeling okay, I need to speak to the doctor about the psychology of the blood and what it’s doing to me mentally. Every cough feels like it’s the beginning of a hospitalization. I took measures over the holidays to minimize the risk of bleeding, e.g., not exercising. My plan for 2011 is to get aggressive and exercise and force the blood to come out if it’s there. Then embolize it right away. I can’t go about living with such a nasty timebomb waiting to interrupt my life. I want to go after it and not feel like I’m waiting for it. It’s time to run into battle not flee it. Let’s see how that works out. I’ll keep you posted.

Stay healthy.

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.

“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.