Articles on the Fly

I am thinking about making my blogging experience a little less formal and a bit more agile. Meaning, I intend to write more shorter, off-the-top-of-my-head posts. A couple of ways for me to do this is to spend less time posting on twitter and facebook and post more articles here. I can still continue to flood twitter and facebook by enabling an autofeed from this site directly into my other accounts. One problem is the matter of redundancy. Who likes seeing the same stuff spammed everywhere? Not me. The good thing is though, if it doesn’t work out, I can always change back to how things were before.

Another way to improve my blogging agility is for me to post while on the fly. This post was drafted from my Outlook email client; future posts may come from my Blackberry using a WordPress app.

I still intend to post longer, more formal articles from time to time, but I’m going to try this way as well to lighten things up a bit and so I don’t have to be bouncing around from account to account so much.

We’ll see how it works out.

Wishful Thinking

Kurt at "work"

There have been many o’ mornings throughout my life that I have laid in bed, fighting with the snooze button on the alarm clock, wishing that something would happen in my life that would make work go away forever.

We all know the old saw: Be careful what you wish for because you just might get it.

Well, I got my wish.

I just didn’t expect it to be answered in the form of a debilitating lung disease.

I was hoping more for…oh, I don’t…newfound riches…being elected king for life on a small tropical island…alien abduction…just about anything other than what I actually got.

But as the new saw goes: It is what it is.

So now what?

Before the lung disease, I was messing around with that leukemia thingy for the past year and it had kept me and my family plenty busy. I was back and forth to the hospital so much and feeling so crappy I didn’t have the time or effort to do much more than sit around, take my meds, and feel sorry for myself.

But just when I was starting to feel somewhat like what I used to feel like before all that leukemia thingy…just when I was beginning to ponder what it was going to be like returning to a normal life (normal meaning back to the daily morning battles with the alarm clock, the cursed commutes, and, of course, work)…just then…without any warning…BOOM…the doctor dropped the bomb on me.

Lung disease.

A lifetime with the constant feeling of slow suffocation.

A lifetime of high, daily doses of steroids.

A lifetime with the constant threat of diabetes and of osteoporosis.

A lifetime with a degraded immune system.

And, by the way, a lifetime of no more work.

I didn’t see that coming.

So much for my dream of helping to build a small company into a megarich, international conglomerated corporation and becoming rich enough to buy a professional sports franchise.

I guess I’ll just have to stash that dream away with my other unrealized dream of becoming an international rock star.

It all still hasn’t really sunk in yet.

I’m only forty-five years old. Regardless of my disease, I plan on hanging around for a very long time.

What the heck is a guy who has reluctantly been holding some form of drudgery…er, I mean, a job…since he first started delivering newspapers sometime around the time our nation celebrated its bicentennial birthday supposed to do with all of his newly “free” time?

What the heck am I supposed to do with myself for the next however many years I have left on this rock?

Well, I do have other yet unrealized dreams.

One of them is to write.

Not just bloggery writing like I am doing right now.

I mean to really write.

To write books.

And not just to write them.

To have them published.

And not just to publish them but to write them in a way that people want to read them.

I want to write in such a way that enables me to be able to proudly call myself a writer…An Author!…and not feel like a creepy, amateurish dork when I do.

So that’s what I’m doing.

I’m writing.

I’ve written.

I’ve written a novel called THE SEA TRIALS OF AN UNFORTUNATE SAILOR.

I’ve written a collection of poetry called POEMS FROM THE RIVER.

They will be available via e-book and pdf on (fingers crossed) February 19, 2011.

You can read a synopsis and first chapter of the book at bojiki.com/book.

But you know what? I wrote most of the novel and the poetry collection before I had all this free time that I now have. I wrote them slowly, sporadically, painfully, over a fifteen-year or so period when I was a working class stiff.

Now that I can fully devote myself to writing I should be able to blissfully write for hour after hour every day, right?

I should be able to crank out a novel every six months, or so, right?

Well, maybe…but, I have quickly discovered that writing fulltime is hard.

I am finding it hard to be disciplined enough to write every day.

It’s hard to sit down with laptop in hand…er, I mean on lap…and to think of stuff that other people might want to read.

I am finding that writing is like…

work!

Back when I was writing while I was still working out in the real world, writing was more like a hobby. I didn’t have to do it. I did it because it was fun…or at least cathartic.

It was fun writing crappy poems and crappy short stories and a crappy novel because I didn’t have to worry about feeding my children from the proceeds of their sales. I could pretend I was a writer without actually having to make the commitment of calling myself a writer.

Sure it stung a bit every time I received a rejection slip from publishers, but who cared. I still had a day job.

But now I have no cover. I have found that writing full time is hard work and I have no fallback position.

Well, I’m on disability so I guess I could always fall back onto the position of doing nothing. Do nothing but sit around, collect my monthly payments, and…

wait…

for…

something…

to…

happen.

Zzzz…

Who the hell wants to do nothing for the rest of your life when you have a once-in-a-lifetime opportunity to recreate yourself into whatever you want to be (provided that whatever you want to be can mostly be accomplished within the confines of your home…and the internet)?

I have declared that I want to be a writer.

And I find that’s it’s hard work.

And now I feel a little exposed.

And a little vulnerable.

And a lot like a creepy, amateurish dork.

But I don’t wish for it to be any other way.

Because we all know to be careful what we wish for, right?

Lung GVHD by Any Other Name

As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.

Say it: Bronchiolitis Obliterans.

Wasn’t that fun?

I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.

I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.

Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.

Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.

I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.

Bronchiolitis Obliterans.

At least it’s still fun to say.