What does the future hold?

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On Friday afternoon I led a conference call with some members of the department. They were upset because the senior management of the department is bringing in consultants to do the job they’re doing. So, naturally they feel threatened and discombobulated about the tactic and they worry about their jobs. I had to listen to 30 minutes of them imagining every possible negative scenario that might happen. Then after the maple tree of discontent and fear had been tapped dry and its sticky syrup rubbed to a nice protective lather, I asked: Is there anything positive that might come from this situation?

Silence on the phone. More silence. I refused to break it.

“Well, maybe,” one of the fearful said. “Perhaps management will get a better idea of the scope of our jobs.” Bingo. There is a possible positive outcome. And more of them came up in the conversation and the negative outcomes fell by the wayside. I’m not sure which will come true for the team when we bring in hired guns. I do know from experience it will never be as bad as some of them predicted. The sky won’t fall and lightning won’t kill them.

And I wonder how I’ve modeled this negative outlook over the years and now with cystic fibrosis. The belief that one can predict the future must come with the disease. And I’ve made the mistake that I can prognosticate all of CF’s negative outcomes. When I was young I predicted that no one would ever love me and I would never get married, and a child was impossible. Yes, one mother of a girlfriend didn’t want her daughter dating me because I had CF and no future. Yet somehow I met someone else who was brave, a fighter, and believed in a future with positive outcomes.

I also predicted I would never make it to 30. Wrong again.

I have a long list of predictions I’ve blown over the years.

So, today I wonder: What does the future hold for me now? My answer: I have no clue, and I’m not going to spend my precious time worrying about it today. I’d probably guess wrong anyway. History shows I have that talent.

Letter to my daughter, 10/14/10

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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.

The Cost of Battle

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If I can compare the 20 days in the hospital to anything, it would be 20 days in enemy territory getting shot at and dodging explosions. In the movies, when the lead actor escapes the battlefield there is a moment of personal inventory. What’s bleeding? What’s broken? It’s just good to be alive. That’s the point. To survive no matter what. In the movies everything heals over time.

I’ve been taking inventory the last few days.

Hearing – more lost thanks to the 20 days of tobra. I can’t hear some high pitch sounds in our house like the alarm. The sound is gone to me. My ears play Jingle Bells 24/7. I left for battle and the explosions took their toll. When I returned, some of my hearing stayed at the hospital. Hasta la vista, high pitched sounds.

Lung function down over 20 percent according to the PFT in the hospital. Will it come back? Let’s hope.

O2 levels normal. That’s good news. So far so good.

Low grade fevers and chills. Still hanging on me. 5:00 p.m. rolls around and it’s time for a nap and baby bottle for me. I’m gone. The CF center seems content to let me suffer through them each day. It’s probably my anger talking. I’m still irritated about some of the decisions or delayed decisions of the stay. The CF team is solid though. I know they care. They just have a lot of patients to deal with.

Over 10 pounds shredded thanks to sitting on my ass doing endless IVs and a lack of an appetite for the same bland food every day. The endless fluids they gave me in the hospital masked the weight loss. At least I’m not peeing 20 times a day anymore.

No blood. That’s a good thing. It hasn’t returned yet. If it does, I can’t decide if I’ll go back in the hospital or just hunt down the people who couldn’t get it right after two embolizations. I’ll throw them on a table and cut into their groin and see how much they like it and educate them on the importance of getting it correct the first time.

Aches and pains. I could use a little time on a medieval torture rack being stretched right now. Or tie me between two horses and pull my limbs until my back pops and I get back the two inches in height I probably lost in the hospital. Tell me again why they don’t offer massage therapy in the hospital? I can get all the morphine I want while I’m there, but a little quality time face down with a certified member of the massage community digging her knuckles into my backside is verboten.  That makes no sense.

All in all, I got my ass beat. And that makes me angry because it’s embarrassing to get beat up. Worst of all, CF didn’t do all of the beating. The doctors helped and I did my part with mistakes I made. Hindsight again. I wonder if I can have it removed? Life would be easier if I weren’t tortured by my errors. I should have seen the landmines, been more aggressive about getting the embolization done quickly instead of waiting six days. There were plenty of other errors I made. Where did my courage go while I was there?

Not feeling so hot

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Though it’s good that I’m out of the hospital, the bad news is that I don’t feel well. During the hospitalization, I suffered from chills, low-grade fevers and sweats that would leave me soaked like I’d stood in a downpour for 20 minutes. In the afternoons, early evenings I would crash hard, which explains the lack of blog posts during the stay as it’s hard to write when you’re curled up in a ball hoping a bolt of lightning will strike you and end your misery. No such luck.

All of this mystified the doctors and they never really came up with an explanation. When I went off the Tylenol a few days before they kicked me loose, they looked at that as a positive sign. So did I. But they never really asked me how I was feeling when they surprised me Friday and sent me home. They made an executive decision that 20 days of IVs was enough. They must have entered it into their mental program and processed it – Send him home, he should feel better by now. I guess I should, but I don’t.

I brought the low-grade fevers, chills and body temperature swings home with me. What a bonus. Now the question is whether I have to go back to the hospital or not. I lived with them over the weekend hoping they would magically go away. Finally, I emailed my doctor this morning and he replied with a few questions about my stomach, which is fine. Then I didn’t hear back. He must be hoping this will pass, go away without explanation, which is what they all must have been thinking while I was in the hospital. Well, it didn’t go away tonight. And tomorrow I go back to work and I feel tired and 50 percent. It’s going to take everything I can muster to get through the day.

This is the first hospitalization where I feel the decision-making system during my stay failed me. It took them six days to embolize me. I wish I had had the courage to force the decision sooner. I didn’t. But I knew I needed to be embolized from day one. They kept throwing the possible dangers of the procedure at me. Yet, my lungs decayed by not doing treatments. I may never get that lung function back. It’s one thing to be hosed by cystic fibrosis; it’s another to be hosed by the medical process. The latter makes me angrier.

I’ll be tortured about this visit for the rest of my life.

Home at last

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After 20 days in the hospital, I returned home Friday night. But not in great shape. You’d think after that period of time in the hole and amount of IV antibiotics, I’d be walking in, refreshed, strong and ready to get back to life as normal. Instead, it felt like I’d run some kind of endurance race or Ironman and barely had the strength to cross the finish line or threshold of my front door. I fell over the line exhausted and disoriented.

Three weeks ago, cystic fibrosis picked me up in its monster hands like I was a rag doll and tossed me hard to the ground. I didn’t see it coming. And after 20 days of sitting in a room the size of some walk-in closets, my body and muscle mass have deteriorated and my mind feels twisted and tired. The physical bruises of blood draws, the PICC area and embolizations will heal over time, but the rebuilding of everything else will take longer. But still I feel lucky. I survived. And that has to be enough for now.

Thank you for all of the comments and well wishes. They made a difference each day. A big difference. My apologies for not replying yet. As the stay lengthened, it turned into both a physical and psychological battle that sapped my energy. Most of the time I escaped into episodes of Dexter and Californication, movies or reading, when I had the energy. Anything that took my mind off of cystic fibrosis and the situation helped and became my mental Band-aid. Now it’s one day at a time as I come back to life.

Despite everything that happened, I still stand by my claim: I am the luckiest guy in the world. CF hasn’t beaten that mantra out of me yet. It’s my F.U. to the disease. CF can choke on it.

The Scarlet Letters: CF

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I feel like I’ve been running from a monster most of my life. It’s the type of running you see in the movies when zombies are closing in on the humans or when Dustin Hoffman sprints away from the bad guys in Marathon Man. It’s called running for your life. And on day 18 of this hospital stay, half my ass is missing from where cystic fibrosis took its most recent bite.

Today is also the day when I had to let the company I work for know about CF. No more hiding it. I have certain protections now under the ADA, which is nice, but I’d rather not have to deal with it and be CF-free. My denial is over – I have CF. The HR department was very nice about the situation. However, as of today, I’m not allowed to work in the hospital until my doctor provides a letter stating it’s okay. In a way, I feel like a weight has been lifted off of my shoulders. I’ve been hiding CF and my hospitalization for over 10 years now. How many conference calls have I held in hospital bathrooms? It might be nice in the future not to have to do a dance every time I go in for IVs.

So, here I sit, wings clipped, and I can actually take the time to write a post. It’s such an odd feeling not to be working, not to be thinking about work. I don’t like it, but I don’t have a choice. And I may find a way around it. (Fox has many tricks he can share.) I have another call with HR tomorrow and I’ll know more about what I can do and I can’t do. And I realize that from this point forward I’ll be linked to CF at work. That bothers me. I might as well sew a big CF on my chest. It’s not about me anymore. It’s about us – me and my zombie pal CF. Someone send me a sawed-off shotgun, please. I need to blast its head off.

Please ignore my previous post

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I spent most of Saturday playing the world’s greatest indoor sport – feeling sorry for myself. Today is looking much better. Not sure why the wheels came off for a day. My apologies. I thought about deleting the post, as I’m embarrassed, but it is what it is and part of a much longer record for my family. Even I have a breaking point.

Part of the problem may have been a virus. I’ve had chills and low-grade fevers and sweating like I’m detoxing from years of substance abuse – not that I know what that’s like but I have seen it in the movies. 🙂 At least one of the doctors believes I have a virus. That’s the easiest diagnosis for doctors to make. I didn’t have the heart to argue. She looked so happy making the diagnosis. Who am I to spoil her buzz? And in this case, I may have to agree. When I entered the ICU on Saturday, I remember the arrogant doctor there being sick. And there was one other staff member sick, though he denied it when I asked if he was sick. Liar, liar, hospital pants on fire. It was obvious.

Thank you for reading. Life is looking better from my knees today than from my back yesterday morning. Tomorrow will be even better.

Dark Thoughts Slither Back

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Two weeks ago today I sat at my computer. With my airway clearance completed and a stomach full of McGriddle, I had the entire weekend ahead of me. Would we spend it at the beach? Any local events? What to do. Then I coughed and it was blood. Not a lot, but a surprise. I wasn’t exercising or doing anything that might create that result. But there it was in all of its glory. And I knew the weekend was gone and I needed to bother my doctor for some cipro on a weekend.

Today, I sit at the computer, an iPad, and my location is a hospital room. Day 14 of this unbelievable odyssey continues. And though I’ve done a good job up to now holding back certain thoughts I’ve fought with for 30 plus years, I feel like giving up, ending it. It’s all so overwhelming – the past two weeks and the future. I’m not sure how I am going to do it, balance everything, work, life and possibly oxygen for the first time. The O2 feels like the least of my worries. Just trying to keep my life as I know it presents the most fear. Do I have the energy to live it?

I used up all of my fighting-stress reserves the past two weeks. I have nothing left. I feel like a piece of safety glass fully cracked and splintered. One tap to it with a hammer is all it will take to shatter the glass into a thousand pieces, never to be put back together again.

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