I am Jenga Man

This is me years ago. I have a six pack and a block missing upstairs.

After 15 days of the greatest fun I could ever imagine, I’m home from my vacation in the hospital. I have the deepest Tobra tan ever on my kidneys. Too bad they don’t show.

I’m surprised I survived this jaunt. I am, really. When my multi-resistant bacteria fire up, they do a number on me. And my bonus of premature appendix surgery, puppet hands, two blood clots and medium-well-done kidneys made the stay memorable.

And then there’s the prize I won behind door number 3: a big piece of plastic implanted in my chest and jugular.

Is it too late to trade it in for the cash? Why do they bother to color it? Am I supposed to feel better about it because I know it’s purple? Why can’t I have one in Home Depot orange?

I can’t say I’m in great shape today, or that we knocked the bugs down like we’ve done in the past. I feel discombobulated and am still coughing up more than I normally do after two weeks of go-go juice. I’m doing my best to stay optimistic but I wouldn’t be surprised if I make a return visit soon.

Work today ≠ Fun.

This is me now. Hey, somebody give me a hand here. I am missing blocks thanks to my crazy pal, CF.

Back in the day, hospitalizations were mellow events. The Doctor popped in for five minutes to make sure I was alive, and eventually kicked me loose to finish IVs on my own. We didn’t take blood or worry about my kidney function. I lifted weights and went about life.

When I needed to remove my PICC, I tied it to my dog’s tail, took a deep breath, and tossed a ball. Out with the line; back with the ball. Thanks, Nurse Chocolate Labrador. She was wired to assist.

Now hospitalizations are advanced Mensa-level problems straight from an episode of Star Trek. At some point, even Capt. Kirk would give up on me – too complex to solve.

The day the hospital doctor discharged me, he said he told his team that as long as he started his day with me, it was a good day.

Is that because I’m such a joy at 9 in morning – doubtful – or because I am so screwed up, he felt better about his day ahead and life? I didn’t ask. I was happy he released me.

Thank you for all of the comments and best wishes. As always, they made a difference, and I read each one twice – because I’m dimwitted and must.

Stay simple to solve.

The view from the floor

Days like this make me miss shag carpet

I spent quality time on the floor with my Thumper yesterday, trying to beat my lungs into submission. At least it spared me from searching more “flu or cold” web sites. I’m voting flu, which doesn’t make sense, as I got my flu shot. It must wear off by March because this has happened before.

Either March hates me, or, flu shots don’t work for me.

It’s an odd virus too. I felt well enough to work in the morning and early afternoon. When I had finished, I felt like the elephant minding his own business when a tranquilizer dart zipped out of nowhere and tapped my ass. Timber, down I went for the afternoon. Nausea joined the party last night, limiting dinner to chicken soup and Tylenol.

Worst of all, my wife has it now. She’s still in the bedroom knocked out. I feel terrible I gave it to her.

I did get a burst of energy at midnight and wrote a different blog post, which I didn’t post. Not sure if I will. I always worry when they come too easily.

Battle royale, day six, begins.

DEFCON 2

Hipstamatic makes everything look cool, even a sign at a hospital

The virus, flu, whatever it is, took a big swipe at me last night. I rarely get fevers, but it was 101.6 on the radio dial, not that there are radio dials anymore.

Why does bad stuff always happen in the dark of night?

The fever came with chills and an elevated heart rate, SOB, and pulseox of 90, 91. Tylenol knocked down the chills, but not the temperature, and I got as close as you can get to going to the ER. The temperature settled down when I cooled off, letting me sleep for three or four hours. I woke up in a wet sweat. And nauseous, which is sometimes a sign of a collapsed lung for me.

I emailed the doctor and he ordered an x-ray. Three hours of my day burned going to, at, from the hospital. No pneumonia, no pneumothorax, no hospital stay – yet. Then home for a weekday nap, something I take every 5 years. Work got cancelled, too, which made me uncomfortable and behind on my projects.

It hurts to cough, which amazes me, as I cough all the time. Virus-aftermath coughing is different, more painful.

The question now is . . . will I move to DEFCON 1 and go to the hospital, or will I escape? I cannot think of any examples of escaping this strong of a virus in a long time. But who knows, maybe I’ll get lucky. I’m on oral cipro, Cayston, and inhaled Tobra. This trio of heavyweights better keep me out of jail, or I’ll be pissed.

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.

Broccoli, Wasabi. Wasabi, Broccoli. Cabbage, Wasabi. Wasabi, Cabbage.

[This is not a medical advice site. But webmd.com is, and where you should go for medical information, please. This is a “guy wearing a bag on his head thinking McGriddles cure everything” site. Can you say “nutty biscuit buns”?  I knew you could. And you liked saying those words, didn’t you?]

I’ve written about my love of broccoli and cabbage and how they’ve benefited my digestion. Gots to have my daily dose of Isothiocyanates or papa turns into a grouchy bathroom bear. But is it the Isothiocyanates or just the benefit of eating more vegetables that helps my gut?

Here’s what I do know: I used to have stomach problems, or the mystery ailment known as Irritable Bowel Syndrome, which is a terrible name and one doctors use for stomach problems they can’t’ figure out. (In a Foghorn Leghorn voice: Yes, sir, yes, sir, that there’s something irritating and in your bowels. That’s right. And it’s a Syndrome. I am, I say, I am gonna call it Irritable Bowel Syndrome. Catchy sounding, ain’t it?)

Then, I started eating broccoli and cabbage and voila, much better and stable. And fewer visits to the stomach doctor. So, I’ve continued to this day. Sometimes,  I’ll eat something different like bad deli meat and things go sideways, but I recover much faster with the power of my gut pals, Mr. Broccoli and Mr. Cabbage, which were the original names of the characters in Reservoir Dogs by Quinton Tarantino, but got changed after the Vegetable Growers of America complained it showed broccoli and cabbage as ruthless killers and no one would want to eat them anymore.

Cough, cough. Bullshit.

Boys, give her some space before she gives you an ass-kicking you'll never forget

And now the boys have a new pal: Ms. Wasabi. Yep, I’ve added her to the mix and she packs a punch like Uma Thurman’s character in Kill Bill. I eat it to the point my eyes water and my nose burns. Occasionally,  I can’t breathe for a second and have to grab the table. Oh, Ms. Wasabi, why do you hurt me so?

Today, I dipped peanut-butter pretzel crackers in it. I’ve also mixed it in tea, which I don’t recommend, as it gets lumpy and doesn’t taste very good and just plain looks bad in the teacup.Think layer of barf.

The strange part is that my breathing seems pretty good this week. Really good. Wasabi? It does have horseradish in it, which is in the Isothiocyanate family. Very interesting. It makes for quite the ITC cocktail with Mr. B and Mr. C. Or, it could be my imagination. And, as many of us know, sometimes that’s all it takes to make a positive difference.

Stay healthy.

[Note: The original title of this post was “Isothiocyanate Threesome.” But after reading Lizi’s excellent post about search engines and key words, I thought it best to change it.]

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.

Free healthcare – in prison

Medical parole: Hospitalized prisoners costing California taxpayers millions – latimes.com.

I got excited when I read the above LA Times article about healthcare in prison. Here I thought that one day I’d have to kill myself when my insurance runs out, but now there’s a possible light at the end of the tunnel – free healthcare in prison.

Of course, I’ll have to commit some kind of crime to get there, and the healthcare in prison doesn’t sound top-notch. However, that seems inconsequential when it comes to staying alive and getting to see my daughter grow up, though it will be on scheduled and supervised visits at the prison. Will I get to keep my iPad? Probably not.

I think I’ll rob a bank. I can pretend to have a gun in my jacket and ask the teller for unmarked bills and no dye packs. See, I’ve watched enough movies to nail it. Then, I’ll just stand outside the bank and wait for the police to arrest me. Life is simple after all. There’s always a silver lining.

Then I think of the honest, hardworking, taxpaying CF individuals and families on GHPP here in California who are barely holding on to it with the state budget cuts. California will provide medical care to people who have committed the most horrific crimes but cut other programs to the bone. Hmm, something about that bothers me – a lot.

Maybe my idea isn’t so hot. I might get tired of having to file my nebulizer mouthpieces into “shanks” or “shivs” – or whatever prisoners call them – to protect myself. Clearly, there’s a downside. Forget I posted this. Thanks.

Next idea?

Use the Force next time an anxiety attack happens

After two visits, my new heart doctor suggested I should go on Prozac. “Forget you” very much, doctor. At what point did you not notice my extensive list of medications? The one that comes on a scroll and unrolls onto the floor.

Sure, let’s add another med to the list. Genius idea. Especially a drug like Prozac, which can do all kinds of strange things to your head. May I have a prescription for a .44 Magnum handgun, too? Pretty please with mustard and my brains on it?

How did I get here?

My fantastic regular heart doctor is getting up there in years and is a 60-minute drive each way, plus the two-hour visit. So, every time my heart does its samba, giving up four hours of my day is a real drag just to be told I’m alive. So, I spun the doctor wheel of fortune and picked a new one close by. The five-minute drive rocks. But the new doctor ain’t my old one.

During the first visit he was complaining about his older patients and how slow they moved and how long the visits take. During the second visit, he mentioned how the children of dying patients don’t accept the fact their parents are dying and nothing can be done. He wasn’t making a big production of his frustration, but was whining. And, as I’m the king of whining, I can spot when someone else is stealing my stage time.

I was also thinking he has life pretty good. He’s a doctor, married with kids and doesn’t have cystic fibrosis. Right there he’s ahead of the game. No whining allowed, Doc. What the hell are you complaining about? Where’s the genie that gives you CF for a month to teach you what you should already know? You’re living the high life.

Back to the five-minute Prozac diagnosis.

Along with the suggestion for Prozac came a few suggestions that showed he hadn’t listened closely to why I was anxious, and ended with the simple advice “don’t worry so much.” Oh, doctor, it’s that easy? Why didn’t I think of that? I’m so lucky. You cured me with your brilliant wisdom. May I kiss your stethoscope to show my eternal gratitude? I promise to name my next boa constrictor after you. The one I’ll let wrap me up and squeeze me to death while I’m high on Prozac.

Prozac this. I’m insane, not depressed.

[“Cranky tonight, I am,” as Yoda would say – if he were not on Prozac, though we all know he is.]

Another winning day, another dog

I’m a lifelong football fan – lifelong Denver Broncos fan. So, Super Bowl Sunday is a holiday in my house. When I tell my daughter that it’s my favorite day of the year, she gets upset, telling me I should choose her birthday. “That day is also in my top five,” I say, which makes her crazy.

I buy this calendar every year because I am afraid that if I don't bad things will happen

I mention the Super Bowl because days like this make me feel like a winner. I didn’t bet on the Packers. However, I did get to watch the game at home with my wife, daughter, and closest friend, who has watched the last 16 Super Bowls with me. That is a winning day, my friends, because I didn’t cough up blood and I wasn’t in the hospital.

I also got to watch another Super Bowl. Though that may seem like a given for some, I can’t be sure that I’ll be around to watch next year’s – I’m not taking anything for granted. Milestones matter.

My daughter turns 9 soon, and I’ll cherish the fact that I’m here to see her ninth birthday, though I don’t want to jinx myself. There is always the chance I’ll have to celebrate the actual day while I’m in the hospital.

Here’s how superstitious and strange I am. I have a 365 Dogs calendar. Each day, I rip one page off of it (except weekends with two days on one page). I do not tear a page off until the actual day arrives. I am afraid to remove the page the night before lest it causes me not to live through the night to see the day – punishment for my overconfidence of looking ahead.

Yes, it’s not easy being me.

Even now I worry about waking up healthy tomorrow, as every time I blog about a good day, I get punished by CF. If I’m lucky, CF will skip this post and I’ll escape its curse of sharing good days. We’ll see. I have a bag packed just in case.

Stay healthy.

Letter To My Daughter – 02/04/11

Dearest Munchkin,

One year ago today I started writing this blog – for you, I thought. But I’m not sure now. I’m just not sure at all.

I hope you read this post one day, and other posts, or some of them, the ones your mom allows you to read. I’ve pushed the limits a few times and have had second thoughts about some of the things I’ve written. It is what it is. I’ve done my best to be frank and present the truth as I see it. Though, as I hope you know, truth does not equal fact. (T≠F). There are a few sentences/posts I should probably take back, though Fox would disagree. [Fox here, I ain’t taking back anything, yellow Labrador. There are no do-overs.]

I’m not sure how interested you’ll be in what’s here. I haven’t spoken to my father in 30 years and don’t regret it, and I don’t really have much to say to my mother. So, I’m not the best judge of what would be interesting to read when it comes to parents. I don’t think I could get past the first paragraph of anything they wrote. So, no guilt if you’d rather be playing your guitar or enjoying life. My gut tells me your mother will be more interested and surprised, as she didn’t know I wrote this blog, or at least to this point. She’s also been more aware of the events I’ve written about, especially the hospital stays.

If there’s anything interesting to read, I say it’s the comments. And though I’ve written close to 200 posts in the last 365 days, nothing I’ve said is as interesting or as touching as the comments I’ve received. Perhaps, that’s the true and best story of this blog – the people behind those comments and their lives and the fact that during 2010 and 2011 I was lucky enough to connect with them through this blog. And somehow despite this awful disease, something special and hopeful can rise from the darkness of living with cystic fibrosis. It feels good to get something back from a disease with the sole purpose to destroy you piece by piece.

And if I look at blogging as a whole, I’d say it feels like white-water rafting, which I’ve done a couple of times. It’s thrilling, scary, tiring, and when I’ve wanted off the raft, my friends have motivated me to hunker down and keep rowing. Sometimes the raft just rows itself and sometimes it takes great effort. But always, it’s rewarding to know you got someplace, flexed your creativity, experienced something new and unexpected, and pushed yourself beyond your comfort zone.

I hope when and if you read this, you are happy – or working your way to becoming happy. I hope you’re not caught up in the material things in life and you understand cash is king and freedom. I hope you’re doing what you want to do and haven’t become chained down with things that don’t matter.

I hope you love your mother and are making sure she is happy and you’re saying things to her filled with love and happiness. Your mother is special and unique and has only love and kindness in her. I’ve never met anyone like her who was so pure of thought, though the world and a corporate job have done their best to try to change that. But they haven’t. I hope you don’t either with the parts of you that are more me than her.

Lastly, I hope your dreams come true. Be patient and work hard. They will. I hope you take risks when it comes to doing what you are most passionate about in life. I didn’t and have regretted it every day. I was so afraid of failure, which caused failure, or didn’t allow me to achieve the success I had hoped for. It’s my wish that you’ll have more courage.

Remember: I love you; your mother loves you; everything is temporary. It’s that simple. Sometimes.

Hugs and kisses,

Daddy