Autumn stumps me

I’m not sure why autumn doesn’t like me. It’s been a trend for many years for it to kick my ass up and down and back again.

This is not Los Angeles in Autumn, which is palm trees and cement. (SXC license)

All three of my embolizations have been in the fall, including one in Germany thanks to hemoptysis over the Atlantic Ocean. I’ve mentioned this before, but I never get tired of telling it just because I survived to live another day.

Even without bleeding in the fall, it’s the season when I’ve experienced the most hospitalizations. I don’t really understand it and my feeble brain has never been able to decode it. I go into the hospital during autumn and usually stay out until I catch the Flu in March.

This year, I’m doing my best to load up on broccoli, wasabi, vitamin C, which I got out of the habit of using in high doses, and vitamin D. I would start taking curcumin root, but with the Lovenox shots, I read it might increase the chance of bleeding, though I may risk it.

I feel like an ex-con who doesn’t want to go back to prison. The thought of it makes me ill.

I should start a pool with donations going to the CF Foundation and have my friends bet on the day I go in. Just by writing this, I have tempted the CF gods to punish me.

My insider advice to any pool players: take tomorrow, Friday. The CF gods are a vindictive and angry bunch.

How I spent (and didn’t spend) my summer vacation

I didn’t spend summer in the hospital. [Fox applauds, then passes out.]

I feel like I won the lottery by not going in, though the pattern for me has long been one without summer hospital stays. With falling leaves, colds and other viruses on the way, you can bet that I’ll soon be returning to hell.

Ebony and Ivory, living in perfect harmony on the beach

I didn’t spend June, July or August coughing up blood, though summer hasn’t officially ended.

And if you’re a betting man or woman, I’d bet on the blood thanks to the blood thinning shots I’m stabbing into my McGriddle-fattened six-pack twice a day. And I’ve just tempted fate by mentioning it on the blog, which means I’ll probably be in the hospital coughing up blood within the next two or three days.

I did spend June working on what the Donald would call a “super-big, important, super-large” project at work. It was a success and once again I proved it’s better to be lucky than good, and assembling a talented team always makes one look better than they truly are. Go Team Unknown.

We did spend the summer with a new puppy – a goofy, mischievous, shower-squeegee stealing, whining, scared of her own shadow, mystery of a black lab that I wanted to give away, but was outvoted by my wife and daughter, who are both attached to the black shadow-thief. (That’s all I can write about the dog, otherwise my friend @onlyz tunes out at this point and starts to read the back of the vegan muffin package.)

I didn’t spend this summer blogging or watching TV, but I did spend it reading. I read over 8,000 pages and enjoyed every minute, staying up late and making the most of when time takes its mandated-by-law break.

Malibu coastline on a nice summer day.

I did spend the hot months milking every bit of fun I could. I filled every weekend with an activity and dragged my wife and daughter to all kinds of places. From the American Idol concert, to the beach, the circus, a dog agility trial and canyon roads we’d never driven. We didn’t take a summer trip this year thanks to the blood-thinner shots, but we still had a great time and spoiled ourselves by eating dinner at restaurants more often.

The end of a great concert at Theatricum in Topanga. Check out a play here if you're in Los Angeles.

Monday, Labor Day, we ended the “holiday to holiday” summer with the annual benefit concert at Theatricum in Topanga. What an amazing afternoon filled with talented singers singing Burt Bacharach songs. A great way to finish my favorite season of the year watching some of Los Angeles’s most talented musicians, like Inara George and Sara Melson, play music for two hours.

So, I’m happy with the job I did having fun this summer. I cannot guarantee I’ll see another one. I hope I do, but it’s not written in stone that I will.

Now it’s time to focus on autumn and the Denver Broncos winning and me staying out of hell and not catching colds or the flu or coughing up blood. I’m optimistic, but know sometimes there is nothing I can do but ride out ill-timed surprises.

Here’s to a healthy fall and winter to all.

Eating wet dynamite while the universe shoots me in the groin

Gunshot #1: I’ll be saying goodbye to a tooth soon. It’s fractured and needs to come out. Gunshot #2: I have big clot in my neck from my four-month old port. Thank you, universe, for the double tap to my groin. It hurts so good.

A month ago I started having pain in one of my back teeth. I grind a lot and have been too busy to get a fancy nightguard to prevent it. I ate through the last one. Along with the pain, I noticed a lump on the gum that would fill up with blood and pop and repeat the process.

The first dentist called it a fistula, which made me think of Dr. Nanos’s research cows that still cause me nightmares. The third dentist, a periodontist, told me I fractured the tooth and it needed to come out. Oh, and better yet, I have very dense bone and the tooth is quite attached to its current location. No rusty pliers and go-go juice will pull this one out. Bring in the power grinder and drill.

Yet, that wasn’t the best surprise of the week. Tuesday during my treatments I felt pain in the right side of my neck and trap. I had been to the chiropractor the day before and thought the neck adjustment must have injured something. But in the back of my mind I thought that it felt like clot pain.

Wednesday, the pain was still there on and off. When it started throbbing on Thursday, I went to the mirror and looked at my neck and there was a large golf ball bulge behind my collar bone. When I pressed on it, a pulse of fluid shot up my neck.

What hellish medical practical joke is this, Universe?

This is the Urgent Care television. Why do they even have it on the wall? I felt like ripping it down.

The doctor at urgent care took one look at the bulge and told me to go to the emergency room because they had a scanner for clots.

Off to the ER, my favorite place in the entire world. What a joy. And the visit didn’t disappoint.

I was lucky enough to draw the doctor who watched too much of the TV show E.R. and longed for the drama of patients with fence posts through their heads and fifty gunshot wounds to the torso – not patients with bulging necks.

“Urgent Care sent you here?” she asked, letting me know my case wasn’t worthy of a visit and that she’d never seen a clot in the vein that was swollen. Clearly, I was a douche bag to her at that point and an interruption to her day of more interesting patients who needed their heads sewn back on.

She called for the scanner, reluctantly. The scanner scanned me and found nothing, which brought about relief on my part. No clot. Doctor Thrill Seeker hated me even more and couldn’t explain (didn’t care) why I had pain and a pulsating lump in my neck. Go away, uninteresting patient. Come back when a gang banger has put a cap in your ass and your blood is spraying like a Yosemite geyser. Then I’ll be interested in helping you.

Ah, the joys of the random ER doc. Wonderful and delightful. But luckily, I have a good CF doc who agreed to take a look at it the next day at the hospital, even though there was no clinic.

After he looked at it, he ordered another scan. The result: a clot at the point the port enters my vein. The ER didn’t scan low enough by a fraction of an inch. I couldn’t believe it. Instant depression in a cup. This meant more Lovenox shots, of which I’ve done over a 1,000 for past clots. And being prone to coughing up blood, the shots are the equivalent to me eating wet dynamite. It’s not if my lungs are going explode like a dragon spitting fire, it’s when and where

So, that’s where I’m at right now. 5 Lovenex shots down. Who knows how many to go. The banging sound you hear right now is my head hitting the wall.

Or, is it the sound of irony since I got my port to avoid the clots the PICCs gave me?

Stay clot-free.

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.

Shallow thoughts from an idiot purple sheep

[WARNING: Adult language, themes, and childish thoughts – a bad combination. Read at risk to your mental health.]

The big monkey pays a visit

Life disguised as King Kong took its giant monkey hand, paw, whatever it’s called because I’m too lazy to Google it, and picked me up by my ankles and dipped me headfirst into a gas-station toilet. Then it slapped me to the ground like a wet fish and called it a head cold.

I have a bad case of mascot head, big and stuffy. My chest is congested, too. It’s not looking good for staying out of jail. I should know better than to go to the mall in March without a space suit – and one for my daughter, too. The term for “Mall” in my language is “Casa de Virus.”

Read the instructions on the soup can and follow them

Soups don't burn people, people do

I read the instructions to cover the soup bowl and let it sit for a minute before removing it from the microwave. But I didn’t let it sit or stay covered – hence the accurate title of this blog post. Instead I pulled it out and peeled away the plastic covering.

The escaping steam burned my middle finger, bad. Bad enough to override my mental ability to turn pain into pleasure, which makes me sound like I’m calling 900-numbers nightly to speak to dominatrices. It’s not nightly, just once a week, but even this level of pain overrides my amazing ability to withstand pain, which was honed by dozens of hospital visits and the hospital workers who think smoking crack and showing up to work is a good idea.

And, if Lizippy’s brilliant theory of “Google-search-word pervs” is true, I should get some new readers with this post. Welcome, slaves. Now sit down and shut up and beg for your beating.

“Leather-whip to the ass” fans aside, I will be borrowing my wife’s Vicodin, another key search word, so I can once again flip off Walmart when I drive by it. My thanks for selling me $5 rubber-hard pillows that make my head bounce up and down when I’m sleeping. Or, is it my rubber neck? Hmm, I did look at the accident on the freeway the other day.

Making a correct decision doesn’t mean a warm fuzzy feeling in return.

Yes, I made the correct decision not to go to Jersey yesterday. Still, today I stayed away from the knife drawer and was thankful California has a waiting period for handguns. Not a good day. The work team is in NJ and I’m not. Once again CF isolates me from the clan . . . of the cavebear – (more disappointed Googlers). CF has a way of doing that – for my entire life. I’ve always felt apart from others, someone who doesn’t belong, a purple sheep.

So, between my cold getting worse and not being able to travel, I’ve done a fantastic job of feeling sorry for myself today. I want a gold star and a meaty rib from the Woolly Mammoth we killed together, as a work team. We worked together to kill it. Go, Team Cavebear.

Guys, why am I by myself? Hello? Anyone? This cough isn’t contagious, you stupid fucks. Come back here.

Scare the people who knock on your door – if they’re not kids selling cookies or chocolate bars

Someone came to my door today selling steaks. Steaks? Are you f’ing kidding me? Who thinks of something like that? I know who – the guy who passes out on the couch with his hand in the front of his jockeys after drinking the entire 12-pack of Schlitz. Yes, my dad.

A dim Christmas bulb blinks while he’s sleeping it off, and he dreams: “I can sell steaks. I can sell steaks door to door. I’m a fucking genius. No one sells steaks door to door. I’ll be rich just like the person who glued sleeves on a blanket.” No, you won’t, Dad, because they sewed the sleeves on. My apologies to those Googling “selling steaks door to door,” but not to my dad.

The next time someone comes to my door selling shiate I don’t need, I’m going to put on my McDonald’s bag, or better yet, wear a bandanna, western bank-robber style. I’ll say in my happiest of voices, “I have highly contagious TB,” and ask them to feel my forehead to see if I have a fever, just like my mommy did. I’ll ask them if they’d like a whip to the ass, too.

Then I’ll call Mistress Honey with the news that some salesman who looked like my father dropped a box of $2 llama steaks on my porch. She’ll be angry because I’ve been bad again. Yes, I have.

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.

Carry the Load, Crybaby

If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.

So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.

And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)

I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.

This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.

I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.