Monthly Archives: September 2010

Hospital Update

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(Written on my iPad in my hospital bed; please excuse typos)

Day 12 of the endurance test continues. After 9 days of fountain-worthy bleeds, one bronchoscopy, two separate embolizations, morphine dreams, four days in a hell called ICU, and steroid hallucinations, the demon known as Hemoptysis has withdrawn. No traces today. Just unfriendly memories. But I’m not out of the woods yet. The 11 days of vacation from airway clearway may have felt nice, but did a number on my lungs. The bacteria have fled to their bunkers and it’s taking the big bombs and hypertonic saline to loosen their hold.

Afternoons are still tough. I do a header into bed like a drunk Olympic diver who hit his head on the edge of the board – I get zero points for my bellyflop entry. I’m still on O2, which is thanks to the lack of airway clearance, inflammation and the party juice they gave me during eight hours of procedures. I’m proud it took them a ton of drug to knock me out. I remember cracking bad jokes right before the bronch and hearing someone say “how much have you given him?” Then I heard about the amount before the second procedure because they were surprised how much it took to shut me up (my wife asked for some to go). We’re not talking about Michael Jackson status here, but the King of Pop and I could have partied together, IVs in tow to see who who could stay awake the longest. Unfortunately, my lungs are still paying the price for my endurance and there’s no “hair of the dog” cure sitting around ready to be mixed.

Embolization hangovers are the worst.

I’m making light of a serious situation again. I hate when I do that. Shit, I’m alive. And I can tell you that this experience made me realize I got everything I wanted in life. I have two California girls who love me and who I’m going to hug like stuffed animals when I get out of here. That’s more than enough to get me through life. More than enough. I am the luckiest guy in the world. Believe it. I do.

Juli’s McGriddle Post

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My warped friend, Juli, wrote a fabulous McGriddle post for moi. I thought she was perfect before she penned it. What’s above perfection? Well, I would say that’s “goddess in the clouds” status. So, Juli, I herby give you the title of McGriddle Goddess and thank you from the bottom of my heart for making it worthwhile to peel myself off the heat-reflecting hospital bed this afternoon.

Here is Juli’s tasty post: http://lifeloveand65roses.blogspot.com/2010/09/my-apologies-to-mcgriddle-sort-of.html

Yesterday, all my troubles seemed not so far away

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(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)

Embolization watch and the TV show Dexter

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(Please excuse typos. Written on my iPad while I have a raging headache from non-stop IVs.)

Well, I can’t say that days two and three in the hole have been a real joy. With the exception of coughing up blood, I felt better before I came in on Sunday. Now I feel crappy from sitting in this room all day trying not to bleed, wondering what guy has to do to get a little glue in his lung.

Last night I came about as close as you can to moving to the ICU and then an embolization. I stood up to walk across the room and felt the pop in my lung and the blood followed. Luckily, one of the nurses had the vision to leave a pink kidney shaped basin in my room, but not all of the blood made it there. Some of it landed on my UCLA shirt that I wear to mess with the Trojan fans here, and my sheets have dried blood on them today. If you took a CSI light to the room I’m sure it’s in places I can’t see. It’s amazing where blood goes when it splatters. It’s not like coughing up Gatorade.

Speaking of blood, I’ve been watching Dexter episodes. Great show. I’m up to season three. What hits me about the show is how much I relate to Dexter himself. I’m not talking about the serial killer part so don’t call the police, though I would love to take out bad guys, but not by chopping them up. A sniper’s rifle would do. Rather, I relate to Dexter keeping a secret from those he works with and his life with blood.

Yesterday, to avoid the RTs who burst in and yell “ready for your treatment,” I spent 30 minutes in the bathroom on a conference call with the heads of the department I work in. Then there are other times I’m on the phone and someone will come in and I have to do a dance of signaling the person to keep quiet while I get off the phone. I am doing my best to keep the CF secret. But it’s getting harder to do so. I feel like I live in this hospital.

And I can tell you my single greatest source of stress in maintaining a job while I do this dance of having CF and working. Is that similar to Dexter maintaining his “normal life” while leading the life of a killer? It would be much easier if I could kick back and read and watch videos all day. But I don’t want to give up the job.

Still, it’s so embarrassing to tell my boss that once again I’m in the hospital. And working in the hospital is getting harder when I don’t feel as well. There were times today I stared at the screen for a half hour fighting to stay awake. It was easier to be in the hospital when I was younger because I had the power of youth on my side.

So, like Dexter, I hide my big secret and do my best not to get discovered. I know it’s only a matter of time before I can’t do it anymore – when I run out of tricks. When that day comes I know I’ll feel a great sense of relief but sadness, too. And I hope that one day I don’t live my life in fear of blood. If only Dexter could be a serial killer of bacteria – Cystic fibrosis would be history.

The potato that bleeds

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(Written on my iPad. Please excuse typos)

Ah, the joys of hemoptysis. It started yesterday and the doctor agreed with my suggestion of cipro to nip it in the bud. Unfortunately, the hemoptysis didn’t go along with the program and woke me up at six this morning to let me know it was hungry and needed to be let out. It’s been so many years that I’ve lived with it that I believe it to be a demon or something evil inside me. What’s fascinating is that its season seems to be Autumn. Last week I wondered if it would return once more this time of year and it didn’t disappoint me.

So I’ve spent the day here in jail. They put me on three IV antibiotics which is a first for me and makes me wonder what they haven’t told me yet. It’s Sunday so their only job is to keep me alive until the weekday team gets here on Monday. I’m hoping they succeed in doing that. I’d like to see Monday.

I’ve spent the day playing the role of a potato quite well watching videos and not doing much else – other than bleeding every time I get up from the chair. I have lacked motivation to work or read or do much of anything.

I had to reject the first nurse who tried to put in an IV today. It’s strange how after hundreds of IVs I can tell if the person is going to succeed or not. I knew she wouldn’t by the way she was looking at my arm like it was the first time she’d ever seen one, asking me where I thought she should place it – a sure sign of trouble to come. Then she went for the hand and missed, of course. I love when they miss and have to go through the motion of moving the needle around, in and out, side to side, hoping to hit a vein as if they were spearing a tiny sausage that rolls every time the toothpick touches it. I had to ask for another nurse, which is always a bit uncomfortable. I asked nicely. The second nurse came in and placed it without issues. There is a god.

When my daughter woke up before my wife this morning, I had to tell her I’d won another free trip to the hospital of my choice. She cried. I didn’t, which surprised me. When these CF situations happen, I go into business mode. I can’t take time out for emotions. I have to get ready. It’s never an easy decision to put yourself in the hospital. Emotion only clouds the analysis of the situation. But the conversation with my daughter has stuck with me all day. Block it out. Block it out.

Ah, the joys of cystic fibrosis.

The Labrador Print

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I have this hanging on my wall. It reminds me of the lab I used to have.

I heart labs. Yes, I admit it. I do. And I’m not embarrassed to share my deepest feelings about them here on my blog.

I’ve had labs most of my life. A couple of black ones when I grew up. And a chocolate lab who lived 15 years and survived a rattlesnake bite, the eating of several pounds of Hawaiian chocolate (the fact she swallowed them whole with wrappers on saved her life), a bad reaction to a medication for arthritis, and the first shot the vet gave her to end her life. She fought to the last possible moment when the vet, red-faced, had to inject a second dose.

Now we have a yellow lab, which was supposed to be a black lab, but my wife and daughter used mind control on me when we visited the breeder looking at puppies. Somehow we left with a deposit on a yellow. To this day, I’m not sure how that happened, how I gave in to them on that decision. But when I look at the four-year-old yellow lab sleeping at my feet, I’m glad I did. She’s perfect.

But that’s not why I’m writing this post.

Why I’m writing it is because I have three framed prints of Labradors in my office. Two of them are paintings of hunting labs, manly dogs. But then there’s a third poster – one slightly off-kilter. There are no shotguns in the painting, no testosterone-laced hunting scene in the background to make me feel better. I look at it and wonder: What was I thinking when I picked out that one? I thought it was a good use of my money? Really? I fear digging too deep in my memories to dredge up any deep thoughts about its purchase. I understand the simple theme of it: Lab pups dreaming about growing up into adult labs.

Ebony and Ivory - can't you just hear that song playing in your head all it the time. I do.

But most of all I wonder about myself and who I was when I saw it in a catalog and felt the overwhelming need to use what money I had at the time and order it. I look back on my life now and thing of the all the cash I’m spent on stuff I had to have, much of it discarded or something you’d sell at a garage sale for a couple of dollars. I struggle with the question of value and consumerism all the time.

But now I look at the print of the two labs again and I can feel the testosterone draining from my pores.  I like the print. It makes me feel warm inside like when I drink hot chocolate and wrap myself up in a quilt and read the latest trashy romance novel. Hmm, that sounds good. Ooh, I have goosey bumps just thinking about it. How sweet it is.

I HAVE LOST MY MIND. WHAT IS WRONG WITH ME. DAMN, THIS BAG OVER MY HEAD GETS HOT.

Sorry, I plead momentary insanity. That is the power the print has over people. Question it not.

Here’s something more embarrassing. I used to own a Labrador t-shirt with an image of a large chocolate lab head on it and “Chocolate Labrador” printed under it, as if one wouldn’t recognize the disembodied head of a lab. I think it went to Goodwill several years ago. I won’t be surprised if sometime in the future when I’m homeless and pushing my shopping cart down Ventura Blvd, black lab on a rope next to my side, I’ll see a fellow man of the streets pushing his cart toward me. He’ll be wearing my old lab T-shirt. And we’ll give each other a nod like only dudes do. No words will leave our lips, but we’ll know. Yeah, we love labs. Yes, yes we do.

Letter to my daughter 09/14/10

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Dear Daughter of the Future,

You’re a big 3rd grader now. Where did those eight years go? In another eight you’ll be operating a motor vehicle on the streets of Los Angeles, which scares me considering the idiots who drive here (wait till the first rain falls and watch the automotive equivalent of a “slip and slide” play out in front of you). I need to buy you a vehicle covered in spikes, a porcupine of a car, guaranteed to keep other vehicles at bay. Perhaps, I could get you a matching jumper to wear?

You’ve become quite the funny prankster and your personality reveals itself more each day. I’m concerned that I might be rubbing off on you and I hope you follow your mother’s path in life. She is kind and loving and smells good. What are the antonyms for those words? That’s me. You’re in good, lotioned hands with your mom. Be like her.

I have noticed something interesting about you – you are a missile. Yes, a missile on a course all its own. We have little control over you. Yep, you blasted off and we’re sitting on the deck eating popcorn watching you fly through the sky, missing planes and birds by inches. At best, we can hope to nudge you in a slightly different direction, help you avoid tall, unforgiving skyscrapers in your path. Like any parent, I wish I could download all of the mistakes I’ve made and you’d have a roadmap. But your “missileness” won’t allow that, will it?  The good news is you’re much smarter than I. But so is everyone else. Lukewarm news might be more accurate.

Here’s one thing I cannot tell you right now – the amount of 3rd grade homework sucks. I have to be a parent and go with the program for the sake of your future, but holy moly they give you a lot to do after school. I feel bad almost to the point that I want to do it for you. I could knock off those math sheets for you pretty quick. Sorry, not allowed. Against the rules. However, when you read this one day, yes, I agree, it’s a lot. Not only that, is math really necessary anymore? Shouldn’t they have classes like “Repairing the damage the generations ahead of us did to the planet” and “101 ways to cook with leftover plastic”?

Once again, my apologies for messing up your blog. Your mother will have some serious censoring to do (sorry, honey. What did you expect?).

Love to you and your mom.  xoxoxoxox

Firing doctors

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I wish I could fire my stomach doctor like Donald Trump does rejects on The Apprentice. “You’re fired,” I’d yell, my hair combed over in a giant wave of spun gold, imperious to all but the fiercest of hurricane winds. “You’re fired for not practicing medicine the way I want you to.  When I ask for the good stuff, I want the same medicine celebrities get with fake ID’s and by using five or six different doctors. That’s right. I want the stuff that makes my troubles fall away and the paparazzi feel like a minor annoyance, a piece of yellow tail stuck between my gapped front teeth.”

Unfortunately, I’ve reached the point where my stomach doctor sees the world his way and not mine. Time to toss him. Time to move on. Not to the point that I’d visit him in his office and say exactly what I think, which would go something like this: “how hard would it be for you to order a **&@$& H. pylori test? I’m the one who has to do all the work one morning collecting the sample – the one I eventually have to drive over to the lab where the tech behind the counter will open the bag and gag, then walk it with outstretched hands to the poor tech in back who drew the short straw of work assignments that day. Yes, people in the waiting area, I’m the only one not here for a blood test. And I’ll leave in shame as everyone stares at me like I just delivered a strain of bacteria only found on a planet in our solar system that will go unnamed.”

“You, crappy doctor, only have to lift the pen, and fill in a circle on a lab test like you did your questionable MCAT, as there were rumors you paid the smart kid in your class to take it. That’s all you have to do, then tell your nurse to give me the paraphernalia I need to make this act happen the next day. But no. You can’t do it as you don’t see the need. Well, good sir, I’ve had it with you. I’m not asking for a 10K test here. Or, is it because I might be correct? That might make you feel bad or inferior, as I only have a medical degree from the College of the Internet signed by a man in a country that used to be part of the USSR. I feel it reflects my skills in self diagnosis quite well. Yes I do. Jealousy on your part, no doubt, because I made a correct call.”

Then I’d fire him. And when he started looking at me like “big deal, crazy hypochondriac,” I’d throw him out the window to watch him land on his new Porsche. Perhaps, the soft-top would have been a better choice after all, Doc, I’d yell.

Now if only the Donald threw contestants out of the window after he fired them. That’s a show I’d watch, but only if the Donald fired himself first.

iPad and Kindle live together in perfect harmony

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Lightweight and more kid-resistant than the iPad

Our new Kindle 3 arrived yesterday, which raises the cost of my iPad to over $1,000, including the price of the iPad itself, the apps, the accessories and now the Kindle. That’s right, the Kindle. I’m counting it in the total cost because I had to buy the Kindle thanks to the iPad.

I’ll explain.

My daughter loves to read. I blame my wife who read to her every day from birth. “Park the crib in front of the TV,” I said. Six hours a day of soap operas and game shows won’t hurt her. Otherwise we’ll be paying for books for the rest of our lives.” My wife ignored my sage advice and now my daughter devours books whole and in bunches. She’s a reading machine and it’s all we can do to keep her stocked in appropriate reading material. (My wife saves the day by screening books. Otherwise our daughter might be reading Valley of the Dolls thanks to me. How is that book not for kids? I said. It has “dolls” in the title.)

Over the years, we’ve accumulated, and paid for, hundreds of books. We have books everywhere. On tables, stuck in the couch, on the bed, under the bed, falling out of the car when the door opens. Everywhere. But I grew tired of the clutter and bought the iPad to help reduce it, and to save money and reduce our carbon footprint.

My idea worked out great, but it led to my daughter hogging the iPad for hours at a time. Not only did I not get to use it, each evening I would open my email to discover individual Amazon receipts for the books she purchased, rubbing in the fact she was enjoying it while I stared at my 6-year-old Dell desktop. Not fun; I wasn’t happy. But a solution fell in my lap – or on my credit card.

Not appropriate for the child, but good for the adult reader

The new lower-priced Kindle 3 launched. I ordered it with the intention that my daughter would use it and my iPad would return to me like a long-lost dog finding its way home. And sometimes plans do go as planned. I am happy to report that I have been reunited with Sparky again (my dog name for my iPad) and my young bibliophile loves her new Kindle (which could be a dog’s name).

However, the only cloud in the sky of my cleverness is that I realize we’re about to witness the death of brick and mortar bookstores – just like we watched the end of Tower Records and other record stores. I have a bad case of deja vu. Why drive to a store to buy music when you can download it? Doesn’t the same apply to books? It does in my house.

Barnes & Noble and Borders stores are toast, done, finished, kaput. They’ll be closing in a few years, or less, I predict. They may still have a virtual store on the web, but the physical locations will join Tower Records in our memories.

This doesn’t mean paper books will go away. Independents may sell them, or Best Buy where CDs went to hang out waiting to die. Or we’ll just order paper books for our coffee tables from Amazon (free shipping and no tax). Or bookstores will reinvent themselves. But they can’t exist as is. Here’s why.

Last week, my daughter and I visited the children’s section at Borders, where I connected to their complimentary Wi Fi. Each time she found a book she liked, I checked for the Kindle version on Amazon. If it was available, I downloaded it on the spot. Yes, standing in Borders I shopped Amazon. That is a retailing model that cannot sustain itself. Well, not for Borders at least. Amazon on the other hand, well, their model looks golden, as does the future of e-books.