“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.

Highlights from my recent hospitalization: The 1st embolization

I’m reminiscing about some of my recent adventures in the hole. Here’s the day of the first embolization.

***********************************************************************************************

After six days of coughing up blood in the hospital and playing the “how much blood did I really cough up?” guessing game with the doctors, I won a trip to the IR room for a bronchoscopy and embolization. When I had an embolization in Germany eight years ago, it took the doctors 12 hours to bronc me and 24 hours to embolize me. It was simple and in a foreign language with fewer doctors making the decision. During my recent hospital stay, a lot of doctors were involved in the decision which I can only guess made it easier to delay an actual decision. I knew by day two when the IVs weren’t working their magic that I needed an embolization. But I didn’t have the courage to force the process and expose myself to a procedure where paralysis is a possible complication. But I knew the lung wouldn’t heal without intervention.

By the time I reached the IR room on day six, I still felt in control of my emotions and alert to hospital dangers. My wife was there and I held back the tears when I left her at the waiting room and they wheeled my bed another 100 feet down the hallway, parking me outside the IR while they prepared the room. I signed releases and heard about the risk of paralysis again, thinking that there were benefits to having my first embolization spoken in German. There are no risks when you don’t understand the language and your only goal is to get on a plane and return home. It was annoying when they read the potential complications in English. What choice did I have at that point? Hearing the risks made me wonder how I was going to buy a gun if I ended up paralyzed. How would I pull the trigger? Is that something I could teach my yellow lab to do?

The bronc took five minutes – bleeding from the right lung – and the embolization took almost five hours. They woke me up when they needed me to hold my breath, which seemed like a lot to ask in my drunken state of mind – a sort of breathing sobriety test on my back. Near the end of the procedure, the right side of my jaw started hurting. When I had a chest tube inserted a few years ago, I had referred pain in my back. So I thought the jaw pain was just that, referred pain from the embolization procedure. I didn’t mention it at the time.

The pain got worse when they wheeled me back to my room. They gave me Vicodin, which helped for a little while. That was about when the hospital power went out, including the back up generator at some point. I was in the condition when one shouldn’t operate heavy machinery so it all seemed surreal. The lights went out and the room heated up without the AC. I had to stay flat on my back with my right leg straight to let the insertion point in my groin heal.

Los Angeles roasted that day in the heat when the power grid went out. It happens here in the summer, though I’m surprised it happened at the hospital. It was quite an emergency. One of my friends joked that had I been in the IR at the time, they would have been up my groin without a paddle. Nice. I’m happy I missed out on that experience.

I need to choose my words carefully at this point of the story. Fact: The pain in my jaw went to 10 out of 10. Fact: It took 90 minutes to get pain medicine and only happened at that point because I had to use my loud voice, which shook the windows of the hospital. (Remember, this was Friday afternoon/evening in a hospital when everyone is trying to split for the weekend; charts come first.) A doctor arrived within 15 minutes and there was concern the jaw pain was related to a possible heart attack (thankfully not, the tests showed). They gave me morphine for the pain. And there was concern some of the embolization material broke off and cut off the blood supply to the jaw nerve. I had to smile and make funny faces and demonstrate my facial nerves worked. (Yes, they made me take the bag off my head to do this.)

My wife came back to the hospital and spent the night on the fold-out bed made of rock. I love her for that. It helped having her there. And she was there in the morning when I coughed up blood again (what a terrible surprise that was) and when they moved me to the ICU, a hell of its own I’d never experienced before and hope never to experience again.

To be continued.

Yesterday, all my troubles seemed not so far away

(typed on my iPad. Please excuse typos)

It’s embolization time. Game time. Operation “Find and plug the leak.” The medical version of Where’s Waldo?

Last night, when I sat down to write my blog post, “pop” went my lung. 60 cc of the stuff vampires dig. Fresh from the source. Hot, red and tasty – if you’re dead with fangs. Another fifteen cc and I would have been send to the ICU. Fortunately, I didn’t cross that line. I’ve been able to enjoy the day in my room working. But I’m tired because I had to maximize the folding bed to its most upright position, which is the same as sleeping against the wall with your ass on the floor. Comfortable it is not.

Medicine is funny. I always thought it was science. I’m not so sure anymore. I don’t think it’s progressed much father from the days of witch doctors. There are just more potions to choose from and the witch doctors don’t fight to the death when they disagree. Still, perhaps, one day the phrase “get a second opinion” will change to “get a fourth opinion.”

Do doctors agree on anything?

I’m not sure, as there has been much debate about whether to embolize me or not. First, one doctor told me that I needed to cross the magic mark of 200 cc of blood to make the cut and get the magic lung glue. Then, today another opinion arrived and the 200 cc barrier disappeared. “It’s a judgement call,” he told me. Oh, how the story changes from day to day.

The attending, who I like a lot, opened the door today and told me from the hallway that tomorrow was my lucky day – I’d won an embolization and a bronc as a topper, the icing on my lung-shaped cake. OH, YEAH, baby. Jackpot. Mama needs some new shoes. Let it ride on red while I load up on Jack and Cokes and fill my pockets with coins from the slot machine. Hold it, this machine pays off in enzymes. Oh, it’s the Wheel of Fortune – the CF Life version. Damn, I played the wrong one.

All week I was told IR probably wouldn’t notice my case because of that 200 cc minimum. The funny part is that they always had to guess at how much I coughed up. Is this science? Really? If 200 cc is such an important number, why don’t they give me a measured cup to cough the blood into? The doctors acted like carnival employees guessing someone’s weight. I asked for a couple of measured cups last night so I could get a precise measurement and stop the lottery guessing game. And my plan worked. Almost.

The doctor came in this morning and looked at the 60 cc in a cup and said, “what is that about 75 cc?” “No, 60,” I said. “Let’s just call it 75,” he said. “I want you to get an embolization.” I sat there staring with my mouth wide open. Science? I have a precise measurement in front of me and it’s circumvented by the doctor. I give up. There must be some advantage to making up your own measurements.

So, tomorrow’s the big day. Several months ago, my CF doctor told me the possible complications of an embolization. I can’t repeat them here because I’ll need to wear diapers if I do. I liked the one I had in Germany much better, as the instructions and complications were spoken in German. I just nodded and said, “sounds great, can I have the lung glue now, Herr Doctor?”

Oh, and though my idea to cough up blood into a measured cup worked, I need a bigger opening. Some of the blood missed, hitting my tennis shoes and floor. How much would you say missed the cup? What would you guess? My expert opinion on guessing blood on the floor? I’d say about 15 cc. 🙂

(to be continued, I hope)

Ex-Celebrities, Anger, Perfect Genes, and Feeling Neutered by CF

Photo courtesy of NASA

I was at my nephew’s little league game yesterday. Perfect day. But I was feeling a little off.

An ex-celebrity coached the opposing team. He was being a d**k and overly competitive and it bothered me.

I don’t think of myself as an angry person, but down deep there’s a ball of rage that bubbles to the surface for special occasions. And it’s not easy to control.

Here was this ex-celeb, the picture of perfect genes, tall, model good looks, who once kissed some of the top leading ladies in Hollywood, with his ex-celebrity wife, herself of perfect genes, making a fool of himself. Perhaps, it was jealously pure and simple that threatened to unleash my little sun of rage.

I wanted to confront this guy and get in a fight, or at least join the fray.

I wanted some magic CF power, almost Vulcan-like, to grab both sides of his face, hard, and show him how lucky he was to be who he is and have what he has. And to show him how infinitesimal in the scope of life a missed little league call is. A punch to the face would have felt good, too, followed by one to his stomach.

Had that happened, hemoptysis would have been everywhere, scaring the children and their parents. Imagine the mass chaos on the field with parents pouring from the stands to get their children out of harm’s way – the crazy celeb-hater spewing blood on the manicured sand and grass.

Cut to the last image of me on my knees on the pitcher’s mound alone with the invisible disease exposed and a Rorschach of blood in front of me.

Perhaps that is why I hate CF so much – the feeling of being a neutered male, different from the rest of the herd, a mutant. Or that CF has kept me from reaching my full potential as a man. Yes, I feel lucky to be here, to have lived this long. But some days it’s just not enough. I want to be normal, to stare at the face of another man, nose to nose, and have the other guy back down.

I want to be the one with perfectly formed bones, square jaw and cool hair.

Without the CF, would my anger still be there? Or, is CF the only thing that has kept me out of prison all of these years? I’m not sure. But I’d like to find out.

___________________________________________________________________________

PFTs, Body Blows and Advice from the Fox

Sometimes a CF punch doesn’t knock me down.  Sometimes its a good punch to the body and takes my breath away,  but I regroup.

That’s why I hate PFTs.

Today, at my post hemoptysis appointment, I took a punch. Not a terrible punch, but I felt it.  PFTs were down a bit but not terrible. Not enough to warrant a jail sentence.

The psychology is tough though: Can I regain the lost lung function?

What would the fox do?  I ask.  “Benzyl Isothiocyanates,” says the fox.

Oh, well. I’m still in the fight. That’s the good news. Not sure what I’m going to do about the hemoptysis in the long run. Got the “1% chance embolization can cut off blood supply to your spinal cord” speech.

Wet my pants and went home. Ate my broccoli and slaw and strategized my next punch.

The blood volcano blows

My daughter had a track meet today, which is 7 hours of sitting for us to see less than three minutes of competing by her. I don’t want to know what the ratio of sitting to action is.  Regardless, it was worth it. She did well. We were very proud.

While the other parents sat and waited for their children to compete, I wondered how many of them were sitting there wondering if their lung was going to spit blood without warning. Everyone who was, please raise your hand (my hand is raised).

After the special gift CF delivered last night when I coughed up blood in our friends’ bathroom sink – a joy cleaning up the splatter – I wondered when the volcano would go off again.

In order not to wake the angry giant, I walked up the hill to the track meet very slowly.  Then, when walking up stairs, I pretended to look at my video camera. This way no one wondered why it took me five minutes to walk up 20 stairs. One pause. Two pause. Three pause and look intently at the camera. Step.

Nothing like sitting there for hours swallowing bloody mucus.  Oh, well, it can always be worse; I just wish it was better and I didn’t have to think about things like this. I’d much rather be showing my daughter how to get a good start out of the blocks or fly in the long jump. Ah, CF, the gift that keeps on giving.

Today, sitting there in the hot sun, I thought about a quote from one of my favorite movies, “The Hustler,” with Paul Newman and George C. Scott. In one scene, Scott  says to Newman’s character, Fast Eddie, (I’m paraphrasing here) “World’s greatest indoor sport, kid, feeling sorry for yourself.”

I discovered today that it’s a sport you can play outdoors, too.

The fear of hemoptysis

I can’t say that I’d choose hemoptysis over the fear of it – coughing up blood rocks my world and I hate it.  The fear of hemoptysis, however, is starting to impact my life.  The last two times I sprung a leak were related to walking up a hill and stairs.  In fact, the latter happened walking to clinic, which allowed me to pass “GO” and move directly to “x-ray” on the CF Clinic Monopoly board.

Both recent episodes have come as a surprise, as always, but during events that in the past didn’t cause bleeding.

Now I adjust my activities due to a fear of bleeding.  I haven’t done cardio for months; I avoid stairs or walk up them slowly. Disneyland last week caused me great fits of stress when I walked up hills (not as flat I remember when I didn’t worry about drenching Mickey with blood, which would ruin a few photos but end up a hit on Youtube.com).  The thought of bleeding in the Magic Kingdom and disrupting my family trip was a heavy weight to carry around.

I know I’m lucky and have no reason to complain, but isn’t it human to always want more? Or at least to want to be normal and not worry about coughing up blood  in public places?