Having a blog rocks! And so does Josh of Joshland!

If my daughter reads this blog one day, I hope she takes away the lesson that you can only get rewards in life if you take a first step in one direction or another. When I started writing this blog I had no idea it would return the level of support, intelligence, humor and kindness that it has. I’ve been blown away over the past year by the experience, as I thought I would attract two or three people who had read every page on the Internet and were down to mine. Like love, I find it best not to analyze anyone’s reading choice too deeply, lest the magic fade. I’m grateful for my new friends – I’ll leave it at that.

And then there is Josh from Joshland, a kind soul unlike any other who walks the walk of inner strength and positivity; a person who has experienced more than a reasonable amount of heartache in his life with cystic fibrosis and the death of his sister, Angie, from CF. Mere mortals might give up. Not Josh. He colors this world orange with his  crazy pal Moganko* and almost makes me want to believe in the goodness of humanity (almost, which is a future blog post).

So, what does this crazy friend of mine from the land of Vikings go and do? He creates two amazing graphics for me. The banner at the top of the page and the Unknown Graphic below. I opened my email and there they were – gifts for moi. And I like gifts. Yes, I am the luckiest person alive.

My humble thanks to Josh for the thoughtfulness and generosity. The banner will go into rotation immediately and appear randomly, depending on my mental state. Regarding the other graphic, I like admiring my handsome self in it. The resemblance is uncanny. Well done, Friend of Moganko.

Please raise your nebulizers for Josh tonight. Salute.

I rock in my purple shirt. Fox doesn't like the way he looks.

 

*There is some debate whether Moganko created the character Josh or vice versa. It’s a mystery that remains unsolved.

Shallow thoughts from an idiot

I thought I’d do more. Be more. Help others. Be more successful.

All in all, when I look back on my life, I feel like I failed. I’m not sure I’d use the word failure, but I might be somewhere close to that. It feels like it.

I can think of plenty of excuses. I won’t list them, as I tell my daughter we are responsible for our own actions. I am responsible for mine. Somehow time went by and I didn’t do what I thought I’d do – amount to what I thought I’d amount to. Not only that, I never took the risks I should have taken. I was so afraid of failure, of making mistakes, of what other people thought of me. It paralyzed me. And I think that lack of taking risks didn’t give me the payoff I probably needed to feel like a success – to be someone that mattered.

Over the years, there were successes. I went back to college and graduated with honors. That was my Everest of self-esteem climbed and no one can take it away from me. I married a brave woman with a heart of gold and we have a daughter we love. We’re doing our best not to screw her up, but it’s not easy most days. Where’s the 365-day calendar telling you how do succeed in raising a child?

Though I have had successes, my expectations were high. I wish I could do it again, but there are no do-overs. I wish I could  say things I’ve said differently, but there is no way to take them back. I wish I had had better relationships earlier in my life and maintained them, but that’s a life lesson I learned late. I wish I didn’t do a lot of the things I did, but I can’t undo them, only try to make up for them.

I wish I didn’t feel like a misfit in a world of normal people who get it.

I have lots of wishes. And I wonder what my life would have been like had I not been born with cystic fibrosis. I wish I could watch the movie of what my life would have been without it. And I fantasize that if I had one wish I would pass up my desire to see my life without the disease. I’d use that wish to cure the disease for everyone with it.

And that’s where my pain comes from. I thought I’d have the life where I’d have the chance for heroic acts like that, to affect a great number of people in a positive way. Oh, well, I’m still the luckiest guy in the room and I have no reason to cry about anything. Life is good. I have to admit it would be better without hemoptysis, but this too shall pass one way or another.

In the Cement Mixer

[adult language and anger warning]

It feels like someone, I mean CF, threw me in the back of an empty cement mixer and turned up the rotation speed to high. Then, as if that wasn’t enough, someone, I still mean CF, threw rocks in the mixer with me. The noise alone hurts my ears and the rocks cause bruising and welts. Then, as if that isn’t enough to cause pain, someone, you know who I mean, adds broken glass to the mixer. The glass cuts my skin and I start bleeding.

Life with CF - some days

Meanwhile, the cement mixer keeps turning and turning and the rocks keep banging against me and the sides of the barrel. The glass keeps cutting.

Then someone pours salt into the mixer, which makes my cuts from the glass burn.

All in all, this is what CF has felt like lately. First, the bleeding two months ago, two embolizations and 20 days in solitary. Fuck you, CF. Then more bleeding the day after Thanksgiving to show me who is really in charge – it’s not the doctors who perform embolizations – and eight more days in the hospital. Fuck you, CF. The hospital kicked me around too. A blown IV puffed up my left hand and I now have a two-inch vein made of rock. During the PICC line procedure my heart went nuts and a doctor actually had to come to the room. When someone was drawing blood, they hit a nerve and now I have nerve pain in my forearm. Then, one day out of the hospital I caught a virus and my white cell count shot up and set back my progress with the IVs. That’s the nutshell version.

Do I need to repeat tonight’s mantra? I think I do – Fuck you, CF, fuck you, because I’m still the luckiest guy in the world.

Yesterday’s Clinic Visit

I am so lucky.

Lucky, lucky, lucky. I’m not sure how I’ve lived this long. Better people haven’t.

My clinic appointment went pretty well. It’s funny now my blood pressure goes up during the visit, especially if they take it before I do my PFTs, which make me nervous as I can’t tell which way they’re going to go. They end in happiness or dejection. No in-between for me.

When I was in the hospital for my two embolizations and 20 straight days of partying, my PFTs when down to level unseen since another doctor ruled the clinic years ago. In the span of my hospital stay, I lost over 20% of my lung function. The good news is – and why I am lucky – most of my lung function returned. I worked my ass off trying to get it back over the past weeks, even succumbing to twice a day pulmozyme, a drug has may cause me to bleed and one which my doctor and I discussed for 10 minutes. (Does twice a day make a difference? He says it’s only a 1 to 2% gain twice a day and wants me to take it once a day.) But I was desperate to use any tool in the tool box to get my numbers up. I’ve been doing my treatments three times a day, as always, with more vest time.  Flutter, of course. And I used the big gun of Cayston the minute I got out of the hospital.

Lucky me.

I also had a great visit because the doctor is top notch – outstanding from a medical standpoint – and human, caring and understanding.  It wasn’t a busy day and he listened to me vent about the last hospital stay and we came up with ways that future stays for all CFers can be improved – measured cups for hemoptysis volumes to reduce guessing; faster decisions to embolize. I’ve never met a doctor with a better understanding of what it’s like to stay in the hospital. He’s awesome. Bromance in the air? Kidding.

I’ve avoided a oral glucose test for the past three years. I’ve never had the time to go to the lab for two hours, or I haven’t wanted to take the time to do it. They’ve written me a dozen Rx’s for the test and it’s kind of a joke when I ask them for a new one each time. Tired of that game, they made me do the test at clinic and skip my morning McGriddle, which made me McMad. Not sure how I did, but I know I’ll find out soon. Scary waiting for results for that test, which is why I’ve avoided it.

I hate questionnaires – especially CF-related questionnaires. I’m at the point in my life that if I don’t like a question, I don’t answer it. When they asked me about sexual intercourse and my family history, I said “next, please.” Let’s concentrate on the questions that have some chance of making me well, people. I don’t give a sh** about zoo experiment statistics that you discuss over lunch and have no bearing on my health. Some of what I go through is none of your business. And the less I talk about certain members of my family, the happier I am.

The social worker visit? Hi. Nothing to say. Bye. Don’t take it personally. (They are my dark thoughts. I don’t need to share them with the world. Does a blog count?)

Here’s a mini-story about irony. The clinic visit, which was my “annual” visit even though feel like I live there, went fast. Usually they go slow and I’m there three hours. I could have been out  in 90 minutes if not for the glucose test. ARGH. And I promised to complete a six-minute walking test for a study they were doing, which also included a questionnaire. And I completed that questionnaire while the nurse was asking me questions from another questionnaire. Two birds, baby. I’m the zen master of multitasking questions. Ask away. I won’t answer, but you can ask.

I completed the six-minute walking test, back and forth in the waiting area. 9 complete laps and some extra feet for good measure. A month ago in the hospital my results were not good and I “desatted.” Not this time because I am full of luck to the point it’s falling out of my pants. And I’ll feel that way until the next time I cough up blood on a Saturday afternoon or have to be admitted. But until then, it’s all gravy, baby. Gravy.

Reflections on the ICU and Second Embolization

(I’m continuing the story where I left off a few days ago)

After the doctors performed the first embolization on Friday, I started coughing up blood on Saturday, which was quite a surprise and a mental defeat. In my mind, it labeled the first embolization a failure, as I shouldn’t have bled again. And I must say the second bleed did seem to stump the docs, who thought they had plugged the leak. My most excellent CF doc explained it as a plumbing problem where pipes of different sizes meet and don’t line up correctly and leaks continue. I didn’t understand his more medical explanation but I had full confidence he did. One of the crazy weekend docs thought it might be from damage to my right lung, my bad lung (I have a good and bad lung), and told me I might need  part of my bad lung removed, which didn’t make me feel so optimistic about my future. Luckily, he was wrong and a stupid MF for thinking out loud in front of me, hence the reason he’s on weekend duty and not scaring the shit out of  patients during the week.

Now if I were completely out of it and in the hospital, the ICU would be the place I would want to hang out. The big glass windows and non-stop, obsessive care sounds pretty good when you’re in an unstable state and hanging on to life. However, when I was moved to the ICU for the bleeding, I was coherent and able to move around. That soon changed when they tethered me to the IV pump on the right side of my bed and the 24-hour heart monitor, oxygen and pulseox on the left side. Frankenstein bound.

As I like to hunker down in my hospital room with the door closed during my normal hospitalizations, this fishbowl of a room where I was the star attraction became my nightmare. When I discovered it had no private bathroom and came with a juice bottle for urine and camping toilet that folded out from under the sink, my bowels puckered up and went on strike. The privacy was one step up from a prison cell. And despite the curtains with partial coverage of the room, I hadn’t reached the point of no shame where I would feel comfortable when a nurse discovered me with my boxers around my ankles, iPad in hand and my rear placed firmly on the toilet seat. I may not take a shower in the hospital, and I may resemble a homeless man with my greasy hair standing straight up, but I’m not at the point where I feel comfortable having a conversation with someone while I’m taking care of business.

And to top it off, the first nurse, who had some a-hole laziness in her, handed me a green box of tissues to use when I asked her where the toilet paper was. These cheap hospital tissues are small and see-through and as absorbent as rock. A much kinder nurse gave me toilet paper when the situation became unavoidable. I made it a point to let the first nurse know about the kindness of the other and to give her a look of “I should strangle you with my oxygen hose right now, but I need it to breathe.”

Thanks to other emgergency IR cases, I didn’t get in for my second embolization until Monday afternoon. At this point, all airway clearance was stopped and they put me on steroids for the jaw pain. Adios morphine dreams, hello steroid hallucinations. Yep, hallucinations. Real ones. Good ones. Like the time I was sitting in bed and the wall moved forward at me real fast, back and forth. Or the time I lay there half dazed driving through worlds painted by famous artists. My favorite was the night I had imaginary friends in my room and woke to find they had abandoned me. What a lonely, sad feeling that was.

Monday afternoon rolled around and my lungs felt congested from no airway clearance. I said goodbye to my wife at the waiting room for a second time, deja vu, and heard the same potential complications speech from the doctor. With no bronc this time, I never reached full unconsciousness. I hung in the misty middle earth of reality and feeling drunk on Colt 45‘s. I do remember them cutting into my groin. I almost said something like “should I be feeling you pinching my private area?” but didn’t care thanks to the fifth beer in my veins. And of course the doctor asked me to perform the same task of a holding a deep breath, though I did have to clarify if he wanted me to start inhaling on 1 or 3. Let’s be clear here, Doc, I’m in an altered state and you’re killing my buzz with these reindeer games and their complicated rules. Is it 1 or 3 when I start breathing? Clarity is the key to happiness.

Three hours later, with Monday Night Football playing in the back room of the IR OR, the team seemed more interested in the game than me lying there on my back with a hole in my groin. Luckily, one doctor stayed behind to seal the leak, though I did think for a moment it would be fitting that I, a lifelong football fan, might die because of MNF. Doctor to my wife: “We’re sorry, we got so caught up in the Bears driving for the score, we forgot to close the hole in his groin and he bled out. But he did lay 100 bucks on them to win the game. Here are the winnings, which I’ll apply to my fee.”

During the three hours, the doctors did a lot of looking around. The area where they performed the first embolization looked much better than on Friday, which was good news. They also found another area that didn’t look normal, probably wasn’t bleeding, but fixed it anyway to help me avoid an episode in the future and help themselves feel better about it not being an unnecessary embolization. It’s hard to say if the second round of bleeding would have gone away on its own without the second procedure. It may have. We’ll never know. The plumbing may have worked itself out.  I was just happy to be done with surgeries that start in my groin.

And can I tell you that the next day when they wheeled me out of ICU and back to the CF floor, my mini-fridge of probiotics on a cart next to me, it was the first time in my history of hospitalizations when I broke down and cried. My CF doctor came to see me and I had nothing left. The energy I used to make it through the two embolizations, and four days in the ICU and three hours of sleep a night (the ICU is never quiet or dark), left me drained by that point and I was very happy to see him. It was the point in a spy movie when the spy, captured and tortured, finally reaches his pain threshold and breaks. That was what it was for me. It was the first hospitalization that broke me. I’m not proud of the moment but I am proud it took me dozens of trips there for it to happen. And I hope I never experience it again, though I have a gut feeling I will. At least I’ll be better prepared when it does thanks to the scar tissue from this visit.

Highlights from my recent hospitalization: The 1st embolization

I’m reminiscing about some of my recent adventures in the hole. Here’s the day of the first embolization.

***********************************************************************************************

After six days of coughing up blood in the hospital and playing the “how much blood did I really cough up?” guessing game with the doctors, I won a trip to the IR room for a bronchoscopy and embolization. When I had an embolization in Germany eight years ago, it took the doctors 12 hours to bronc me and 24 hours to embolize me. It was simple and in a foreign language with fewer doctors making the decision. During my recent hospital stay, a lot of doctors were involved in the decision which I can only guess made it easier to delay an actual decision. I knew by day two when the IVs weren’t working their magic that I needed an embolization. But I didn’t have the courage to force the process and expose myself to a procedure where paralysis is a possible complication. But I knew the lung wouldn’t heal without intervention.

By the time I reached the IR room on day six, I still felt in control of my emotions and alert to hospital dangers. My wife was there and I held back the tears when I left her at the waiting room and they wheeled my bed another 100 feet down the hallway, parking me outside the IR while they prepared the room. I signed releases and heard about the risk of paralysis again, thinking that there were benefits to having my first embolization spoken in German. There are no risks when you don’t understand the language and your only goal is to get on a plane and return home. It was annoying when they read the potential complications in English. What choice did I have at that point? Hearing the risks made me wonder how I was going to buy a gun if I ended up paralyzed. How would I pull the trigger? Is that something I could teach my yellow lab to do?

The bronc took five minutes – bleeding from the right lung – and the embolization took almost five hours. They woke me up when they needed me to hold my breath, which seemed like a lot to ask in my drunken state of mind – a sort of breathing sobriety test on my back. Near the end of the procedure, the right side of my jaw started hurting. When I had a chest tube inserted a few years ago, I had referred pain in my back. So I thought the jaw pain was just that, referred pain from the embolization procedure. I didn’t mention it at the time.

The pain got worse when they wheeled me back to my room. They gave me Vicodin, which helped for a little while. That was about when the hospital power went out, including the back up generator at some point. I was in the condition when one shouldn’t operate heavy machinery so it all seemed surreal. The lights went out and the room heated up without the AC. I had to stay flat on my back with my right leg straight to let the insertion point in my groin heal.

Los Angeles roasted that day in the heat when the power grid went out. It happens here in the summer, though I’m surprised it happened at the hospital. It was quite an emergency. One of my friends joked that had I been in the IR at the time, they would have been up my groin without a paddle. Nice. I’m happy I missed out on that experience.

I need to choose my words carefully at this point of the story. Fact: The pain in my jaw went to 10 out of 10. Fact: It took 90 minutes to get pain medicine and only happened at that point because I had to use my loud voice, which shook the windows of the hospital. (Remember, this was Friday afternoon/evening in a hospital when everyone is trying to split for the weekend; charts come first.) A doctor arrived within 15 minutes and there was concern the jaw pain was related to a possible heart attack (thankfully not, the tests showed). They gave me morphine for the pain. And there was concern some of the embolization material broke off and cut off the blood supply to the jaw nerve. I had to smile and make funny faces and demonstrate my facial nerves worked. (Yes, they made me take the bag off my head to do this.)

My wife came back to the hospital and spent the night on the fold-out bed made of rock. I love her for that. It helped having her there. And she was there in the morning when I coughed up blood again (what a terrible surprise that was) and when they moved me to the ICU, a hell of its own I’d never experienced before and hope never to experience again.

To be continued.

Letter to my daughter, 10/14/10

Dearest,

If God had come to me a year before you were born and asked me to design the exact daughter I wanted – that your mother and I wanted – I would have worked on your design day and night. Every waking hour spent thinking of every detail, your hair color, your eyes, the way you speak, your voice, your personality, and anything I could think of that would make you perfect. Would you know how to play every musical instrument, speak every language? Would you be tall, short, medium height? There would be details of details to consider.

And I can tell you this. Had I spent that year dreaming up the ideal daughter, the daughter your mother and I are so lucky to have, I would have missed the mark completely compared to the perfection of the daughter we received. Even if I had spent a lifetime in a cave working every moment of the day, I would never have come close to the marvelous person you are. I would have failed and been so happy that I did. (I’m happy I was not given the task to begin with.)

You are perfectly imperfect and a once in a lifetime combination of spirit and intelligence and Tabasco sauce. And you are brave. You have handled my hospital stays with courage and grace. I know you will continue to do so no matter what happens, and that you understand your search for happiness and love and humor trumps anything bad life might deliver. Tell life what you want it to be – command it like it’s your Labrador. Be patient, kind, and give clear instructions. It will retrieve everything you need when you need it. Trust me. It will.

I love you.

Letter To My Daughter – 6/23/10

[Part two of a two-post blog. Here’s part one: https://unknowncystic.wordpress.com/2010/06/22/switzerland-crumbles-neutral-no-longer/]

Dearest Daughter of the future,

If the moon falls from the sky and pulverizes me, or Fox’s girlfriend accidentally mixes radiator fluid in the punch again, or CF takes its final swipe at me, probably on an airplane, please ask Mom to open the file on the computer named “blog post 062210.”

Please read it with her to make sure you do not live your life with a hole in it because I’m gone. I’ll be ticked if you do. I’m not telling you that you can’t be sad. You can. Just don’t let it go on too long. You have my complete blessing to have fun, enjoy life, be happy with what you have, and not be sad for what you don’t.

You have a life to live and a family who loves you. And, one day, you’ll have a mate who will wait on you hand and foot like you’re a queen, just like we, your parents, did when you were growing up.

There is one more very important point I want you to know: Thanks to you being here, existing, I lived a longer and happier life. And you helped me kick CF hard, right where it counts. That is a fact.

From the minute you were born, which finally happened because I made your mother eat PF Chang’s hot mustard that forced you out of your comfy womb house, I had new energy to do my treatments. I became obsessed with taking care of myself because I wanted to make sure I stayed around to see as much of the movie that is your life.

I blew into the flutter like a mad man, up to an hour at a time. My health insurance paid for a vest that I used every day. I never missed a treatment. I ate pounds of broccoli and cabbage every week. I looked for every advantage I could to outfox CF.

I owe my bonus time to you.

Every day I lived with you and your mother was a dream. I’m not sure your mother will say the same thing because sometimes she failed to see just how charming and funny I was every day. But you know the truth, I was.

Remember, always wear your helmet, honey.

I want to leave you with one last memory tonight that I never want you to forget: the times we rode our scooters around the hospital grounds, especially down the parking-garage floors like we were breaking the law, thinking the security guards would catch us at any moment. And the time you did a flying face plant when you thought you could ride through mud. PICC line in my arm, bacteria in my lungs – none of it mattered on those scooters. We had a blast.

You helped me give the middle finger to CF and the “thumbs up” to life.

For that alone, I will always be grateful to you. The rest was icing.

Take care of Mom.

Love,

Daddy

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

I am the luckiest person alive – Redux

I have new readers and friends; and several wrote excellent comments this week. I’m thankful they did. So, I feel it’s important, after my recent posts “live from the hole,” which sounds like a great name for a concert album, that I restate something important:

Daddy & Daughter t-shirts because we're learning to play guitar together. This will be a great hospital shirt, too.

I am the luckiest person alive.

That is a true statement. Four-leaf clovers fly from my pockets when I walk. McGriddles fall from the sky. And just when I’ve thought this disease has had the upper hand in the past, some lucky solution revealed itself.

I have survived hemoptysis 39,000 feet over the Atlantic Ocean, and a collapsed lung flying to Texas. I’m not a big fan of airplanes anymore. But I am here.

Every day that passes, even my darkest, I remember how lucky I am to be 47 with a disease that has taken so many others younger and brighter. I’m not sure about the grand logic in life that has allowed such a situation to happen; I feel it’s best not to question my luck, just be thankful that I have it.

I visit cysticfibrosis.com and am a proud member of sharktank.org. I read about the pain CF causes everyday.

I have blogging friends I care a great deal about, especially that crazy pink blogger waiting for new lungs. I hope she gets them soon. I’ve boxed up two McGriddles and some extra luck and sent them to her, and hope she remembers her old pals when she’s running marathons and shopping for new Jimmy Choo shoes in Paris.

Here on Father’s Day I sit typing, feeling lucky that I have a wonderful wife, who is stronger than I and who takes a body blow during each of my hospital stays. I’m not sure it’s the life she dreamed of. I have no idea what she was thinking when she signed up for this joy ride 25 years ago, which has been harder on her. She worries more than I do.

They insisted I get new slippers. Our Lab was playing, nipped me in the heel, and ripped the back out of one of them. Yes, they're gross, CG.

I also have a daughter, which never seemed possible for us earlier in life, but who now steals muffins from the kitchen and thinks I don’t notice. I’m a terrible muffin cop. Life is short, eat your muffins, I think. My wife will have a different and very verbal opinion when she gets back from her run.

I am lucky. I just want to make that clear.

And now that I’ve written this post and am happy someone will comment with “cue the sappy music,” I know Fox will have to post next and get this one out of his system, as he is truly in charge here.

Until then, I am taking the day off from worrying about my job, insurance, potential hemoptysis and everything else ahead of me. I’m going to spend a lot of time looking up at the sky today, not looking down.

Stay lucky and well.

(Message from Fox: I don’t believe what I’m reading. He never learns, this asshole Unknown. He never learns.  This lucky bastard – I’m so tired of hearing how Leprechauns hump his leg. I’ll be putting my paw up his . . .  Oh, never mind. ARGH. Hand me a Schlitz and the MacBook, Ginger, I have some unraveling to do.)

Fantastic Mr. Fox didn’t have CF, but if he did . . .

My family and I watched Fantastic Mr. Fox Thursday night.  Great movie.  My daughter and I loved it. My wife fell asleep and would have loved it had she stayed awake (living with me is a tiring experience no doubt).

The movie, or more specifically Mr. Fox, reminded me of what it takes to fight CF successfully – you have to be a fox. You have to be crafty and quick on your feet. You have to have animal instincts that constantly monitor changes in your environment (or your health). If you stop being vigilant, you’re liable to get shot by an angry farmer, or stomped by cystic fibrosis.

Also, always have an escape plan.  Mr. Fox escaped some tight situations.  Each time I get out of the hospital, I feel like I escaped the buckshot to live another day.  And I savor life, sweat the little stuff less, and appreciate my wife and daughter even more after these close calls.

Based on the CF blogs I read, there are a lot of foxes out there fighting CF, using any edge they can get to outfox the disease.  It’s not just CFers who have this skill.  Parents of CFers outwit the disease, too, using clever tricks to keep their children healthy. And, like Mr. Fox, these fellow Vulpes vulpes are doing it with style and class.

Long live the fox.