Letter To God, 042411

Bubble in the sky, 2011

Dear God,

I don’t believe in you. But I believe in the right for others to believe in you. But I don’t. Believe in you.

My wife and daughter do, however, believe in you. So, for their sake, I’m hoping I’m wrong and you do exist. I want happiness for them more than anything else I can think of. So, shoot a lighting bolt down from an empty sky and turn me to dust. And for them – protect, embrace, hug.

When I realized what this disease was about, and the lives and suffering it has caused, I knew I could not believe in a god that created cystic fibrosis.

I must have done something wrong in a previous life. I understand.

I am lucky. I understand.

I have everything I need. I understand.

I am so close to the perfect life. I understand the asterisk.

What I don’t understand is how you could design a disease that harms children. That takes them away from their parents. That makes them suffer so much. You are no god of mine.

You owe us a cure, or a remedy. A lifespan “increaser.” A stress and exacerbation reducer. And you owe it to us now. I have a feeling I won’t be on the list for it after this blog post, but I can live with your decision, or maybe I won’t. But if you give it to everyone else, good.

I suggest you send a spark to a scientist or doctor or mother or father or brother or sister, or anyone who will take that spark and put in a pill or nebulizer and make magic happen. Magic, magic, magic – it’s the least you can do.

If I read another blog post where an innocent baby, child or young adult has spent a night in the hospital because of this disease, I’m going to transform into a Phoenix and scorch the heavens until they are clean of anyone at your dinner table who thought CF was a good idea. It wasn’t. It’s not. Take it back.

It’s your turn to make it right for those still here. It’s too late to help the others. You’ll have to answer to them in person one day. And I hope you have a good excuse. You’re going to need it.

Please protect those who fight this disease, and the ones who love them. They demonstrate true courage and bravery every minute of every day, and never make the papers with “Hero” next to their names. They should. I hope you have a good reward for them in the end.

I expect mine will be a pile of coal, a shovel, and a furnace.

UC

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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.

Tasty dishes and my day as a racehorse

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I need two turkey thermometers, please. Send to my attention at 666 Hospital Hell Dr. Hades, CA 90000.

Oh, and I need someone to jab one in each of my kidneys, if you don’t mind. I don’t. I need to see if the hospital has completely cooked them or not. They’re not sure.

And nothing makes for better eats than kidney, mashed potatoes and gravy. Yum. It’s a classic dish in hell, eating your own kidneys.

When I was shy of 216 pounds Thursday night, which meant a weight gain of over 5 pounds in one day, I should have known something was up. But when I went out for my late night joy ride of the nurse’s station, or how to walk in circles and like it, I knew I was hosed. I couldn’t make it to the end of the hallway without being short of breath.

I had transformed into the Puffy Water Boy, a cartoon character that never made it big because he fought crime and fires by peeing on both, making him a bad role model and one parents hated when they had to clean up after their kids.

I was full of water. My feet, my ankles, my calves, my chest. Is my creatinine high, Doctor? Oops, they forget to measure this week. Patient oversight – I forgot to tell them what to do.

Time for emergency measures. Who has a spigot? Stick it in my butt cheek and let’s flood the hospital gardens. We must be green at all times and I am a valuable source of H2O. Love me, hold me, tap me.

I spent Friday peeing in a measuring bottle. And pee I did. Almost 7 liters, or approximately 14 of the small Arrowhead bottles. How do I know this? Because the doctors on Saturday couldn’t hold back their admiration of my day as a racehorse. I promised to fill the trash can for them as my next trick. Get your tickets now. Standing room only. Puffy Water Boy promises to put on the urinary extravaganza of a lifetime.

They scanned my kidneys today, and I’m supposed to go home tomorrow. But the hospital, she’s crying and doesn’t want me to leave. And she’s doing everything to keep me here. Who knows what the latest test will reveal? So, I’ll believe it when I’m in my car and driving home. I wouldn’t be surprised if a piece of parking garage concrete breaks off and crushes me to death.

Would I be upset if it did? Not really. Make it quick, please. I don’t want to spend another day of my life in this place.

Power Port Rangers Unite!

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I am upset with the Women of CF who have ports. Yes, yes I am. After reading their wonderful blogs over the past year and their posts about ports and how fantastic they are and all of that, I had mine installed yesterday.

And I expected the same experience. There is only one problem. I am not a woman. I am a big cry baby. Ladies, couldn’t you have just pretended it was hard? Please, for those of us in the weaker sex?

F**k me, this thing hurts.

It feels like they shoved a big jagged piece of amethyst under my chest. It burns. It itches. It aches. And when we infuse, it feels like it’s spraying fire into my chest.

I have the nervous system of a Labrador. I feel everything. Ouch, boo boo to my chest. Someone give me a garden trowel to dig it out.

The doctor’s reaction to why it hurts when it infuses: “Odd.”

“My picture is next to that word in the medical dictionary,” I told him. He didn’t argue with me.

So, to the Women of CF, respect. You are tough. I never hear you complain. And it will be all I can do not to write a post a day on how much this piece of medical plastic hurts and bothers me.

If there is a plus of my new Power Port, it has full Bluetooth capabilities and I can stream music directly into my body without anyone else hearing. And it has a purple light that glows under my skin like ET. I use it as a nightlight.

But why can’t I beam back to the Enterprise? Scotty? Are you there? Major Tom?

When I went to have this piece of shit inserted, I was calm. Then one of the young doctors told me what they were about to do. It sounded like they were going to bury a large spider in my chest. And I had a panic attack. One shot. No good. Two shots. Nothing. Three shots. No buzz. Shot four. Okay, maybe the spider won’t eat me from the inside today.

When they wheeled me out of recovery, I passed a doctor and she gave me a big, long grin, like she knew me. I half smiled back, feeling uncomfortable from her huge smile. It’s hard to describe it – kind of like she was in on the joke, but I wasn’t.

Then it hit me: she must have been the doctor who operated on me. And I remember her telling me to shut up and not move. And I remember rambling and babbling. I wonder what I said? Whatever it was, she couldn’t help the huge grin, which is better than me getting a slap to the face.

When a nurse comes in my cell, I raise my left fist to the port, salute with the right hand, and say “Power Port Rangers unite.” Now you know why they draw straws each shift and the nurse with the short one gets stuck with me.

Power Port Ranger Zero out.

Prisoner Zero? No, Puppet Zero

Hospitals are like ships in the middle of the ocean turning in circles, unable to choose a direction. This way, doctor. No that way, doctor. Read the map, doctor. I did, doctor. You read it incorrectly, doctor. Can we get a consensus here? Who is Captain today?

Port, starboard, all engines stop. We are dead in the water.

The decision was made to start IV heparin. And when did they start it? 11:30 at night. Brilliant. That is the best hour because there are so many doctors around to help should something go wrong. And thanks to the spirit of the hospital, nothing did. She showed me some mercy.

I did my night of heparin and woke to discover we had changed course. No to heparin. Yes, to letting the clots go away on their own, which means no Lovenox shots. Another win.

I feel like I am improving but I have had a small relapse tonight. A slight back slide. I hope tomorrow is better.

Work is tough. I went on short-term disability today. But I have so much work, I am working in the background. This flu hit at the end of a major project and I made some mistakes. It was hard to get stuff done last week face down. Any time at work now is bonus time. I am going to go as long as I can, but I know everything comes to an end. It is more difficult by the day to keep it up.

My wife and daughter surprised me with a visit this afternoon. My wife must have been worried about me and the beating I took this weekend. Usually, they stay home during the week. It was nice and I got outside the prison walls for 30 minutes. The building watched me.

Oh, the title of the post. I almost forgot. I have IVs in each hand now. I am tethered to the machine much of the day and feel like a puppet. I reach for objects and whoa, stop. I cannot reach them with my puppet hands. If only they could add them to my feet. Then they could really make me dance.

Puppet One out.

The monkey sits on the dryer

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I walk to the industrial clothes dryer, open the door and crawl into it. Then, the monkey sitting on top pushes the buttons. On and off. Hot, warm, cool. He mixes it up. And I tumble round and round in the metal bin, bruising, trying to catch my breath. The monkey likes to mess with me. He enjoys it. It’s fun.

Friday night, I stepped off the bed and slipped in a puddle. Water? No. Zosyn. The nurse punctured the bag and it leaked out onto the floor.

Welcome to my weekend in the dryer.

Saturday gave me a CT scan of the gut. I was surprised I have any left.

My wife and daughter visited. I forget how I have to keep my head down to survive the week until they arrive on weekends. I felt better.

Sunday arrived with the news my appendix was dilated and ready to give birth to three stones. Time to come out, as that was why I had the flank pain, they thought. No food or liquids Sunday. And I went outside for the first time in six days.

My wife told me my daughter had cried last night and said, “daddy, doesn’t ever complain. I have such special parents.” She will be in for a surprise when she reads this blog years from now and says, “all my dad ever did was complain.” At least, I didn’t complain to her.

It’s funny our little nine year old noticed. And though I am convinced the experience of having a dad with CF will make her a stronger person with unique insight into life and its fragile, sandy nature, it will still have its pain for her. But in the end, she will be special for it, and appreciate every minute. That is the gift we will give her.

Sunday also gave me a defective mid-line. The nurse flushed it hard three times in the morning. I did not know you can flush a line that fast. But you can. And he did. Then the Meds started leaking out the bottom onto my dressing. A new cover and it started holding, until the night when it drained again. Out of order. No PICC line nurse on call. Time for a new shiny IV line to the hand.

Press tumble dry, on and off, 50 times, please, monkey.

If there was a highlight, the benadryl injection blasted my rocket into space and I am convinced they gave me some narcotic out of sympathy. 45 minutes of super buzz. I thanked the nurse over and over, and she couldn’t stop laughing at the stuff I said but don’t remember today.

My captive stand-up audience of one. The monkey clapped, too, then pressed “on.”

So, today was “exorcise the appendix” day. The surgeon came in, rubbed a chicken claw down my chest, and made love to my belly with his hands. He told me I didn’t need the surgery and left for Tahiti.

Stop the cycle. Bang, my head hits the metal ridge and the monkey snickers.

Jackpot, no surgery. Bummer, because I had watched the surgery on YouTube the night before and was looking forward to it. I could have done it myself.

Cut, cauterize, cut, snip, snag and bag. Extract the evil spirit.

Now comes the best part of my four-day dryer romp. Rejected for surgery with a dilated, three stone appendix, the monkey needed to inflict more pain. Making his monkey sounds, he spit into the dryer and voila, two blood clots in my right arm, one svt and one dvt. Damn, good one.

Now last week, when I received the midline, I asked them to use heparin to flush the lines. They do for a PICC, but balked at the midline for reasons I am still unclear about. Something about bleeding, which makes no sense, as I flushed it with heparin in November six or seven times a day. No bleeding.

But there is debate about the DVT and its age. Of course there is.

Does the monkey just make up its own story as needed?

I met with vascular surgery. Too risky to extract. Hello, heparin. Then back to the Lovenox shots to the gut, which I did a year of, and sent me to the sink coughing up huge amounts of blood. Looking forward to that joy again.

I wish I had a happy ending to this post – something special if you’ve read this far. But I don’t.

I do, however, know this: the hospital is a living breathing life form. A spirit. I can feel its presence. It moves, expands, contracts. I have spoken to it at night, in the quiet dark. I understand its language, its innocence.

It loves me, and says, “you will never leave me again. We were meant to be together, forever.”

What a drag it is getting old

20110408-095120.jpgThe Rolling Stones were wrong. It’s not a drag getting old. It is a drag getting old and being sick. It’s not a drag getting old when you’re Mick Jagger and you spend your days selling your songs to companies for money you’ll never have time to spend before your hourglass runs empty of sand. Perhaps, for Mick, it’s a drag getting old and being a sell-out. Probably not.

So, last night, in the hospital, I thought, just thought for a moment, that I should peel myself off the sheeted rubber mattress and drive to the ER. I hit 9.5 on the pain scale, with sun face and lower back pain and a general feeling that I might not make it through the night. That is never a pleasant thought, especially when you’re already in a hospital.

Would the nurse enter the room later in the night to discover my exploded remains covering the newly painted walls? I hope they have more Behr Sand Cream and Cape Cod Millionaire Blue paint sitting around.

After the doctors disappear when the sun goes, it’s keeping you alive time. Despite me catching on fire last night, did I see a doctor? Luckily, I had a great nurse.

This is a hard disease and there are a lot of moving pieces.

Today, my creatinine was higher and the doctor said he would lower the Tobra dose. Was the dose changed when it showed up? Of course not. Sometimes, I feel like it is best not to be proactive and to just succumb to medical system and it’s slowness and possible mistakes. But I can’t give up control – yet. That scares me more than death.