Bleeding Orange, Blue and Red

The Tower of Terror ride at California Adventure hoists you up, up, up until the ride comes to a sudden stop and double doors open to the outside world and an amazing view of the park and Disneyland in the near distance. Just enough time to take a breath of California air before the bottom drops out of your world and you plunge to the ground, taking away that last breath and leaving your stomach behind. Screams fill the elevator shaft.

That’s what coughing up blood is for me. The bottom falls out of my life in milliseconds. Hope, stability, calm – they leave me in the time it takes to snap my fingers. It’s amazing how so much chemical reaction can take place in the body in such a short period of time, elevated blood pressure, panic, adrenaline and sweat all mixed together in a nice “fight or flight” cocktail – connecting me to my prehistoric brothers. But this ain’t no Woolly Mammoth hunt. The enemy twisting me into knots lives inside and is microscopic. I’d rather face a furry elephant and take my chances with a spear.

When I look at the red blotch on the paper towel, I wonder where this event is going to lead me. Hospital? Cipro Rx? What is the first step I have to take? Email the doctor right after I put the blood through a series of questions.

Is it new or old?

Pure or mixed with mucus?

Volume? Teaspoon or tablespoon? More? These the questions the CF team will ask.

Lesson I’ve learned: get to the Ativan bottle immediately. If it’s a bad bleed, my rising blood pressure becomes a water-filled garden hose left out on a 100-degree day.

One week to go. Enjoying every day until the game. Pissed about having it in NJ. The NFL made a bad decision having it there.

One week to go. Enjoying every day until the game. Pissed about having it in NJ. The NFL made a bad decision having it there.

The scales of my life needed balancing this week. I was too happy thanks to the Broncos returning to the Super Bowl for the first time in 15 years. There’s a lot of orange and blue in our house right now and we’re preparing for the big game. Should I paint my face? Color my hair orange? These were the tough questions being asked before I sprung a leak.

There is good news. The bleeding stopped the next day and has stayed away. However, it creates a mental state of waiting for it to happen again. Every cough is processed carefully before I get the courage to look at what I coughed up. So far so good.

I just have to make it 8 days to see the Broncos in the Super Bowl. Eight days.

Welcome to the Beach House

It was a mad dash getting ready to leave our house for a month during the kitchen remodel. My wife did most of the work emptying the kitchen cabinets, carefully packing at first, followed by filling our living room with food and cooking utensils. We’re ready to be featured in an episode of Cops with viewers at home commenting, “how can people live like that?”

Adios, old kitchen. Goodbye to the mismatched stove and hood, Home Depot cabinets, tile with crumbling grout, and 17-year old microwave. In with the new.

Before leaving for the rented beach house, the Universe punished me for my good fortune. Blood from my lungs. I told the dang doctors in the hospital that I had some blood coming up, but they kept telling me it was from the sinus surgery. Wrong. 15 days in the hospital and I get out for over a week and I have bleeding. Argh. Moments like that test me the most, as just when I think I’m in the clear for a period of time, I find out I’m not.

Hello to two weeks of cipro. Crossing my fingers it does the trick.

I’m writing this post in the house that is close enough to the ocean to hear the waves crashing on the beach. It’s pretty awesome. Today after work the three of us and two dogs walked the couple hundred feet to the sand. Again, awesome.

I did, however, under dress. It’s July, 100 degrees where we normally live, and yet, 45 minutes away here at the beach it’s 65 to 70 – and cold at times. I need to drive home and get some warm clothes, like a jacket to protect me against the wind at the beach, and my Denver Bronco pajamas to keep me warm in the morning. And though it’s overcast most of the time, it’s as good as I dreamed it would be.

Yes, I am still the luckiest guy in the world.

3, 3, 3, 2, 2, 2, 1, 1, 1, blast off to worlds unknown

Well that happened. 9 days of oral steroids tapering to 1/2 a tablet for another 10 more days.

And what a fun time it was riding the prednisone rocket.

If this were a Monty Python film, the line would be, "It's just a harmless little white pill, isn't it?" Photo: Creative Commons

“Please make sure your seatbelt is fastened, your seat is an upright position, and your head is securely attached.” 

My favorite part was the return of coughing up blood. Nothing more fun than that. I’d really missed it.

But there were other exciting parts too, like the headaches, panic attacks, and anger, especially during the return to Earth’s gravity and tapering doses. Or what I like to call, the “leaving the comfort of zero-gravity” stage.

“The USS Prednisone has reached maximum velocity. Please hang onto your drinks and nuts. Or pour your drinks on your nuts.”

And then there was the detour to my local CVS to measure my blood pressure when my face and eyes felt like they were going to explode. They didn’t. But I did take a day trip to the Cardiology planet with my heart lacking a clear and steady beat (Would the meth-head playing the drum kit kindly look up the word “rhythm”)

Oh, yeah, prednisone can increase blood pressure. Another bonus.

Did this medicine help me at all? I have no idea. All I can say is that I’ve felt discombobulated all week while on it, and have spent a great amount of time at doctors and looking up medical information.

Fortunately, the blood is just about gone. After 30 years of coughing it up, I have not yet mastered the skill of dealing with it. When it happens, it’s the scene you see in the movies when the camera zooms right up to the main character’s face – too close in fact, as you can see every pore in his face – and the background starts spinning around.

“When the rocket ship stops free-falling, feel free to throw up at that time. For the comfort of your fellow passengers, please swallow it until landing. Your pilot and those who have to clean it up thank you.” 

That was my trip. I know it’s not finished yet, but the worst is over. Isn’t it?

We’ll see. There’s still this week’s clinic appointment and a possible hospital stay if my PFTs aren’t improved. Let’s hope the prednisone helped and all of this was worth it.

Derailed by autumn bleeding

I’ve felt off this week, not 100%. The weather flipped from hot to cold in one day and with it my equilibrium. Today the autumn bleeding arrived.

The good news is the bleeding isn’t bad – yet. But it’s there and I’m now I’m on cipro. And I get to skip a Lovenox shot tonight.

Creative Commons: Lucretious

The bad news is that I took 5 mg of vitamin K when I meant to take 1 mg and the clot in my neck bubbled. I need to get another scan this week. After two months of shots, a little vitamin K shouldn’t rock my clot. My gut tells me the port-line is out of position and won’t let the clot go away. It needs a doctor’s attention, me thinks.

I did force myself to go out in public tonight, but it is an odd feeling to be in a crowd when you have hemoptysis. It’s surreal, like I’m watching life through a movie lens instead of my own eyes. I feel jealously when I see other fathers and their families and think how nice it would be not to be thinking about my lungs and the hospital. I’m sure they have their worries too.

An extra punch to the gut came when my supervisor told me he was changing positions Monday. I had a good relationship with him and he knew my situation. Now I get to explain it to someone else. It would be nice not to have conversations like the one I’m going to have. It’s embarrassing.

That’s it for tonight. Post a day 2011 checked off but not with the post I had planned.

No one lives forever

Par-a-noia strikes deep
into your life it will creep
it starts when you’re always afraid
step out of line the man come and take you away
Buffalo Springfield

I look better in black and white

I have a plane reservation for Monday. I don’t remember how long it’s been since I’ve flown. A year? Over a year?

Travel with cystic fibrosis hasn’t always been kind to me – hemoptysis over the Atlantic Ocean, German hospital; collapsed lung over Texas, chest tube and chest tube redux; and half-a-dozen or so travel episodes of coughing up blood, even in Hawaii – how screwed up is that?

And recently, I’ve had two embolizations and unpredictable moments of bleeding, sometimes due to exertion.

So, the thought of getting on a plane Monday scares me. It’s fear, pure, simple.

It bothers me to realize I’m afraid of something – deeply afraid.

Bad things happen when I travel.

If my lung bleeds on the plane, how much will it bleed? Will I be able to walk off the plane? Or, will I be carted through the airport to a waiting ambulance, my shirt Rorschach-red, people staring?

My crows fly wild, agitated, noisy.

The icing on the cake of indecision is the head cold I’ve been fighting with nasel irrigation, tea, vitamin D and M&Ms. The decision may not be mine to make after all. The cold may force me to stay home in what I like to call a “career-limiting move,” as if I had a career. But I have job, with health insurance. I’d like to keep it.

There is also the voice inside I like to call the “Train-wreck Watcher.” It gives me courage to go, to get on the plane, and see what madness might play out – to witness a possible derailment: a hospital in NJ; coughing up blood in front of my co-workers; or dealing with breath-taking stress and feeling trapped.

Train-wreck Watcher says: Is there anything the disease can throw at you that you cannot manage?

I don’t know. Is there? Roll the dice, sissy boy. No one lives forever.

BREAKING NEWS: Blogger derails in midnight crash

Mar 10, 7:32 PM EST

Associated Press

LOS ANGELES (AP) – An obscure blogger was injured in a mental derailment in a northern suburb of Los Angeles early this morning. The incident happened at approximately 12:30 a.m. Many details are still unconfirmed at this time. However, KCBS reported on its 9:00 a.m. news broadcast that the blogger was high on M&Ms while blogging late into the evening.

In confirmed witness reports from LAPD, the blogger experienced unusual pains like those of indigestion or heart-related troubles. He also felt anxiety over an upcoming trip to the state of New Jersey and a general sense of worthlessness. Mild hemoptysis is also suspected in adding to the feeling of dread experienced by the blogger.

The mental breakdown comes after weeks of staying up late writing blog posts while running on fumes and anxiety.

Rumors also persist there was constant pain in his back, which may have led to the heightened anxiety throughout the day and leading up to the episode in question.

Two witnesses, a large furry mutt and a lazy yellow Labrador, were on the scene and witnessed some of the events.

“I thought it was odd when he pushed my hindquarters off the couch. But then left within . . . what’s Time again? Well, he walked away soon after whenever,” said the yellow lab, clearly shaken by the behavior of the blogger. “I’m still upset. He does that to me every night. I have the spot. It’s mine. He just takes it like he owns it. Sometimes he grabs me by the collar. I feel bullied. It’s awful. But I still love him. I can’t explain it. He has it. Do I earn a treat for this interview?”

Family members who slept through the nightmarish agony and drama had no comment at this time. However, the furry mutt did provide additional details. “I saw him with his head in his hands for a long time. I was worried. Then he ate something small and round and drank some water,” added the mutt. “Later he went back to his couch and fell asleep. But he didn’t look so good this morning. Maybe it was bad kibble? It can happen. Eat some grass, that’s what I tried to tell him. He never listens.”

Though the blogger himself had no comment when the AP contacted him by phone, it was reported by KABC that he fell asleep at his desk several times today and felt lousy.

Unconfirmed reports indicate he stood on his front lawn at approximately noon today waiting for a meteor to fall on his head and crush him. However, AP sources have yet to confirm whether his wish was granted. No meteor sightings were reported in Los Angeles today.

According to both dogs, he ingested at least 200 M&Ms of various colors this afternoon in an effort to recapture his work “mojo.” A source who asked not to be identified confirmed the plan failed.

AP will continue to monitor the situation and bring you live updates should events warrant.

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When my mind goes south

[Adult language and themes]

I’ve been trying to figure out what happens when I have bad days and feel like ending it. I wrote the camel story the other day because it described that it’s not the single straw but the load that breaks my back. My doctor once described CF as carrying a full bucket each day and it only takes one or two added drops to cause it to overflow. Overflowing is bad. That’s when I end up in the ER because I think I’m having a heart attack.

My thought process can be positive six days of the week and “bam,” day seven arrives and everything goes south in a hurry when a couple curve balls come my way. I realize I’m not thinking straight, but I feel trapped. And only one solution sounds reasonable as an escape. I know I’m screwed up, but I can’t do anything about it.

Here’s a sample from the other day.

Blood streaks. Fuck me. Not good. Where will this lead? Hospital? No. I don’t want to go in again. I can’t go in again. I can’t do it. I can’t take another trip there. I have a ton of work right now and important deadlines to meet. I don’t want to talk to HR again or call my bosses and explain.

I should end it.

I have to fly to New Jersey at the end of March. I haven’t flown in almost a year. When I walk through the airport, I’ll be carrying heavy bags and exerting. Exertion equals blood. I don’t want to cough up blood in the terminal. I don’t want to cough up blood on an airplane again. What hospital will I go to in New Jersey? I can’t spend two weeks there on IVs. What if I need another embolization?

I should put an end to all of this.

An email saying I have to go to Detroit for training later this year. De-fucking-troit. No. Another plane trip. I can’t fly. I don’t know that city or anyone in it. What if I cough up blood there and have to go to the hospital? Two weeks in Detroit. I don’t want to go on that trip. How can I get out of it? How many special favors do I require at work compared to every one else. Fuck CF.

I’m not sure it’s worth going on.

I have a growth near my ass. How funny is that. I won’t mention this on my blog. Too embarrassing. Great. What doctor do I see about this? I’ll start with the skin doctor. Seems like a fatty tissue. Gross. I think it’s been there awhile. It it was cancer, I’d be dead by now wouldn’t I? Have it checked out. I hope it’s not serious, but I’ll ask the nurse to leave the room when the doctor looks at it. I’ll have to put one leg up on the chair. Embarrassing.

I can’t do this anymore.

My wife is going on a business trip for three days. I told her to go, but I wish she wasn’t. I have to take care of our daughter. That’s a lot of work. How will I do it? It’s the week before my deadlines. What if I cough up blood while my wife is gone? How fast can she fly back? Who will my daughter stay with? Probably one of our friends. How many days could I make it coughing up blood and not going in? The hair brushing and homework and all the stuff my wife does. I don’t know if I can do it.

I should just end it now. That’s the best solution. I can’t do all of this. I just can’t do it anymore. I’m embarrassed. It’s just not worth it anymore. I don’t want to fail.

So, that’s how it goes. At the time it happens, it’s serious, a wave that comes over me as the load becomes too heavy to carry. And I can’t break away from the thought process. It is a feeling of being trapped, and I have to escape. Then, later that day, I feel okay. Sometimes it takes a Xanax or two. And it’s ironic because every other day I’m worried about losing my life. This, however, I do know: It’s hard to be this screwed up and know you are.

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.