It’s alive! IT’S ALIVE! (In Dr. Frankenstein voice)

Bleeding from my lungs is a living creature or entity. I’m not sure what to call it. I just know it’s alive and looks for opportunities to take me down and make me pay for everything bad I’ve done in my life. It’s karma living inside of me waiting for payback. And payback is a real ball buster.

We went to Disneyland yesterday. I didn’t quite feel 100%. Something was off both mentally – the panic attacks of earlier this week – and physically – a possible virus. So, the Disney adventure started with me battling myself and trying to avoid a full-on anxiety attack in the Magic Kingdom, with one of my primary concerns being bleeding from exertion. Luckily, the blood didn’t happen until I walked in the house last night. Lucky me, as I’d have hated it if it had happened in public on a ride.

The blood isn’t filling the sink, as it has in the last five months, but it’s hard to tell which direction it will go. I started cipro right away. No more waiting a day to see if the doctor approves it – I awarded myself an honorary doctorate in medicine and green-lighted the antibiotic. Go for it.

Today, the blood seems to be retreating slowly. I have a father/daughter dance tonight and my daughter’s birthday party is tomorrow. So, I’m hoping I can hold out and the cipro will work this time. Here’s crossing my fingers I don’t cough up blood during a dance tonight,  which would be like a scene out of a Stephen King movie.

These are the days when I cannot express my sincere hated of cystic fibrosis with words. I lack the ability to describe the depth of my anger. And if any healthy dad comes up to me tonight crying about his life, I’ll probably have to punch him in the nose and ask him what his life would be like if he had to worry about bleeding all the time. Give someone like that CF for six months and then lets see how much they complain about what they have or don’t have in life. They’ll feel like they won a 100 million-dollar jackpot the day their six month sentence is up.

To be continued, as always.

Ocean waves of despair

[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

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.

“Me Time” Is Overrated

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

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

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.

Reflections on the ICU and Second Embolization

(I’m continuing the story where I left off a few days ago)

After the doctors performed the first embolization on Friday, I started coughing up blood on Saturday, which was quite a surprise and a mental defeat. In my mind, it labeled the first embolization a failure, as I shouldn’t have bled again. And I must say the second bleed did seem to stump the docs, who thought they had plugged the leak. My most excellent CF doc explained it as a plumbing problem where pipes of different sizes meet and don’t line up correctly and leaks continue. I didn’t understand his more medical explanation but I had full confidence he did. One of the crazy weekend docs thought it might be from damage to my right lung, my bad lung (I have a good and bad lung), and told me I might need  part of my bad lung removed, which didn’t make me feel so optimistic about my future. Luckily, he was wrong and a stupid MF for thinking out loud in front of me, hence the reason he’s on weekend duty and not scaring the shit out of  patients during the week.

Now if I were completely out of it and in the hospital, the ICU would be the place I would want to hang out. The big glass windows and non-stop, obsessive care sounds pretty good when you’re in an unstable state and hanging on to life. However, when I was moved to the ICU for the bleeding, I was coherent and able to move around. That soon changed when they tethered me to the IV pump on the right side of my bed and the 24-hour heart monitor, oxygen and pulseox on the left side. Frankenstein bound.

As I like to hunker down in my hospital room with the door closed during my normal hospitalizations, this fishbowl of a room where I was the star attraction became my nightmare. When I discovered it had no private bathroom and came with a juice bottle for urine and camping toilet that folded out from under the sink, my bowels puckered up and went on strike. The privacy was one step up from a prison cell. And despite the curtains with partial coverage of the room, I hadn’t reached the point of no shame where I would feel comfortable when a nurse discovered me with my boxers around my ankles, iPad in hand and my rear placed firmly on the toilet seat. I may not take a shower in the hospital, and I may resemble a homeless man with my greasy hair standing straight up, but I’m not at the point where I feel comfortable having a conversation with someone while I’m taking care of business.

And to top it off, the first nurse, who had some a-hole laziness in her, handed me a green box of tissues to use when I asked her where the toilet paper was. These cheap hospital tissues are small and see-through and as absorbent as rock. A much kinder nurse gave me toilet paper when the situation became unavoidable. I made it a point to let the first nurse know about the kindness of the other and to give her a look of “I should strangle you with my oxygen hose right now, but I need it to breathe.”

Thanks to other emgergency IR cases, I didn’t get in for my second embolization until Monday afternoon. At this point, all airway clearance was stopped and they put me on steroids for the jaw pain. Adios morphine dreams, hello steroid hallucinations. Yep, hallucinations. Real ones. Good ones. Like the time I was sitting in bed and the wall moved forward at me real fast, back and forth. Or the time I lay there half dazed driving through worlds painted by famous artists. My favorite was the night I had imaginary friends in my room and woke to find they had abandoned me. What a lonely, sad feeling that was.

Monday afternoon rolled around and my lungs felt congested from no airway clearance. I said goodbye to my wife at the waiting room for a second time, deja vu, and heard the same potential complications speech from the doctor. With no bronc this time, I never reached full unconsciousness. I hung in the misty middle earth of reality and feeling drunk on Colt 45‘s. I do remember them cutting into my groin. I almost said something like “should I be feeling you pinching my private area?” but didn’t care thanks to the fifth beer in my veins. And of course the doctor asked me to perform the same task of a holding a deep breath, though I did have to clarify if he wanted me to start inhaling on 1 or 3. Let’s be clear here, Doc, I’m in an altered state and you’re killing my buzz with these reindeer games and their complicated rules. Is it 1 or 3 when I start breathing? Clarity is the key to happiness.

Three hours later, with Monday Night Football playing in the back room of the IR OR, the team seemed more interested in the game than me lying there on my back with a hole in my groin. Luckily, one doctor stayed behind to seal the leak, though I did think for a moment it would be fitting that I, a lifelong football fan, might die because of MNF. Doctor to my wife: “We’re sorry, we got so caught up in the Bears driving for the score, we forgot to close the hole in his groin and he bled out. But he did lay 100 bucks on them to win the game. Here are the winnings, which I’ll apply to my fee.”

During the three hours, the doctors did a lot of looking around. The area where they performed the first embolization looked much better than on Friday, which was good news. They also found another area that didn’t look normal, probably wasn’t bleeding, but fixed it anyway to help me avoid an episode in the future and help themselves feel better about it not being an unnecessary embolization. It’s hard to say if the second round of bleeding would have gone away on its own without the second procedure. It may have. We’ll never know. The plumbing may have worked itself out.  I was just happy to be done with surgeries that start in my groin.

And can I tell you that the next day when they wheeled me out of ICU and back to the CF floor, my mini-fridge of probiotics on a cart next to me, it was the first time in my history of hospitalizations when I broke down and cried. My CF doctor came to see me and I had nothing left. The energy I used to make it through the two embolizations, and four days in the ICU and three hours of sleep a night (the ICU is never quiet or dark), left me drained by that point and I was very happy to see him. It was the point in a spy movie when the spy, captured and tortured, finally reaches his pain threshold and breaks. That was what it was for me. It was the first hospitalization that broke me. I’m not proud of the moment but I am proud it took me dozens of trips there for it to happen. And I hope I never experience it again, though I have a gut feeling I will. At least I’ll be better prepared when it does thanks to the scar tissue from this visit.