living

It’s FTW! Because We Love to Win! – part 1

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First off, for all of you losers out there, it’s FTW!, not FSP!

And for all you dinosaurs out there who have no clue, FTW! is not a dyslexic acronym for WTF?, it stands for “For the Win!”

We winners tend to use it often.

And if you do not know what WTF? stands for my response to you is “W! T! F! Over!”

Come on man! or woman! Get with it. WTF? stands for What The…ah forget it. I’m not even gonna try. Heck, I’m not even gonna recommend that you try to “google it” or, in your out-of-date-case, that you try to “Ask Jeeves it” or try to “Dogpile it.” Because if you don’t know what WTF? stands for by now then you are such an outdated dinosaur that you had just better wait until one of the three people left working on your dismal local print newspaper gets around to writing a profile on it in the “What’s New!” section.

Then you’ll know for sure what it means.

But first you just hang on and around and wait for it.

Wow. Print newspapers.

Now there is a real winner of an industry.

It used to be, perhaps.

But not anymore.

Minus all you dinosaurs out there, when was the last time the rest of you read a print newspaper?

For more than a few of you, I’m sure, the answer is never.

Because as soon as this internet thing came along, which, in the grand scheme of things, really isn’t too long ago, the print newspaper industry began to fold like an origami crane.

I bet you thought I was gonna say fold like a newspaper, right?

You’re so predictable.

But back to winners.

I like the internet. It’s a winner.

And since the newspaper is no longer a winner, then I no longer like it and I will no longer associate myself with it.

Because I only like winners.

So what about FSP!, you ask.

Any guesses?

Don’t worry, I don’t expect you to know what that one stands for because as far as I know it is a Kurt original.

But hey, aren’t they all?

All of the good ones, at least.

I’ll blame all the bad ones on some loser.

FSP! is a good one, though, and it stands for “For Second Place!”

Told ya it was good.

So, if I were to unacronymize what I said in the first sentence of this article and write it all out it would be:

“First off, for all you losers out there, it’s For the Win!, not For Second Place!”

It’s FTW! and not FSP! because Americans only love winners, don’t they?

I mean, we!

Americans only love winners, don’t we?!

That’s what I meant to say.

Honest.

Too late. I am sure one or two of my three regular readers, one of whom is me, is saying right about now, “See! There he goes again! There. He. Goes., talking about America as if he isn’t proud of it and of Americans as if he, himself (I never really understood why we do all that “I, myself” and “you, yourself” and you, yourselves” and “he, himself” and “she, sheself” (huh?) and “we, ourselves” over pronoun-cification of stuff. Who else would this one or two of my three regular readers be redundantly referring to when she (For some reason, in my mind I imagine (Duh, where else would one imagine if not in his or her mind?) that this one or two of my three regular readers I am referring to is a she. You can imagine this one or two of my three regular readers I am referring to to be whomever you want him or her to be, but to me, I imagine this one or two of my three regular readers, one of whom is me let us not forget, who I am referring to to be a stereotypically white, coming-to-us-(at us?)-live-from-smack-dab-in-the-middle-Middle-America, more-or-less-than-middle-class, less-or-more-than-middle-aged, and significantly-more-than-average-(Since I am getting ready to say the word “weighted” next, and since the words “middle” and “average” mean about the same thing, at least in this instance anyway, I guess I could have used the word “middle” again instead of the word “average” so that I could have continued with the annoying parallelism that I had going on; but, to me, “middle-weighted” sounds a bit too forced, even for such a forced parallelism such as the one I had going on. “Average-weighted” just sounds a bit more natural, don’t you think? Do you think? Besides, if I had used “middle” instead of “average,” then I wouldn’t have had the opportunity to include this, yet another, annoying parenthetical expression that I intentionally, yet ever so smoothly, included for you to stumble over just so I can keep you confused and uncertain as to exactly what my stance on anything really is, because, let’s face it, it is much safer for me to straddle the proverbial fence than it is to actually declare forthright and for sure what I truly believe in. Accountability can be such a bitch. Oh, and I also do it, all these blasted parenthetical expressions, that is, so I can see exactly just how far I can go with this shtick of mine before you finally tell me once and for all to take this shtick and shtick it up my logistical shoot for shooting waste and other matters such as BS like this blog post. But that’s all it is, right? All this BS is nothing more than a shtick, which I am sure most of you are all ready aware. But, shtick or no shtick, I bet some of you out there, at least those of you who think of yourselves as Winners!, will, in your over-compulsive effort to Win!, probably read and re-read this section in an over-compulsive effort to find a forgotten or misplaced or out of character closing parentheses or dash (not hyphen, no no, not hyphen) or hyphen or missing comma or dangling participle or some other kind of point-keeping whatnot method so that you can say while pointing your finger like a jack hammer right at the spot on your monitor where you found the error(s) of my way(s), so to speak, that you are referring to, “Ha! Looky here, Brindley! Looky right exactly here at your mistake(s), you pompous dumbass!” and then proudly declare yourself a Winner! and properly declare me a Loser! (As implausible as it may sound, it is plausible, though highly unlikely, that there is at least one little bastard-of-an-error in here that even I may have overlooked. So all of you annoying pain in the ass nitpickers, do your thing and find it for me; and if you do find it, and I know you will, let me know, and I know you will. Because the Lord of lords and even you knows, and soon so will you if you don’t all ready, the only thing that I hate more than an annoying nitpicker constantly hounding for and finding and resolutely declaring over and over again the error(s) of my way(s), is knowing that my ways are errored and not knowing how to fix them.) Well, I’m pretty sure someone might do that. I know I would. Heck, I do that even when reading cereal boxes or pill prescriptions or condolence cards so why wouldn’t I do it when reading someone’s blog? And if you are one of those losers who are too nice to go around trying to nitpick other people’s writing mistakes, let alone their many other misfortunes besides their miserable writing, then let me tell you you really should try it because it feels sooo good whenever I do find someone else’s mistake, even if they only happen to be anonymous ones found on cereal boxes or pill prescriptions. But oh, if I were to find a mistake on something I can identify the mistakee with, like on a condolence card, say, then, without any doubt in my former military mind, whoever that mistaken mistakee is, he…sigh…or she…will surely hear from a surly me about it. The pure joy and bliss I feel when finding someone else’s mistake must certainly mean that my endless pursuit to help others less fortunate than me—i.e., (or is it e.g.?) losers—achieve perfection are ordained by God, Himself… Damn it! I did it again! Strike that useless and redundant goddamn Himself, regardless of how High and Mighty It might be, and just leave it at plain and simple God!) weighted—and I imagine (and by imagine, here, strangely enough, I don’t mean imagine at all but instead I mean “I believe,” even though all the while I am talking about a make believe, imaginary person (English is sooo confusing)) that America’s average weight must all ready start out much heavier than most countries’ above-average weights do, especially all those rice-eatin’ Asian ones that have not yet been attacked by us. And by us I mean McDonalds, which is, of course, the same thing as saying America. So, for all of my foreign readers, that means that even the average, or middle, take your pick, American weight is really frikkin unaveragely high by your standards, I imagine (And yes, by imagine I once again mean “I really believe it to be so.”).—she.) says “he?” Don’t we understand who the “he” is that she is referring to? Does she really also need to include the “himself?” Are we really that confused (to put it politely) as readers? It’s not as if there are an overwhelming amount of potential antecedents in this blather to choose from to begin with. By my count there is only YOU (and I sincerely do thank you for being here, BTW (Don’t you even dare ask what BTW means.)), an occasional WE, our one or two of three regular readers who I refer to as my IMAGINARY SHE (She, at least in my mind. Like I said, you have the freedom to chose any gender or trans-gender or sex or trans-sex (And just what the heck is the difference anyway between gender and sex?) or whatever or whomever you choose to use in your own imagination.), and ME, AKA KURT, AKA BRINDLEY, AKA KURT BRINDLEY. That’s it! …Sheesh! Keep it simple lady, will ya. Why make things more difficult than they have to be? Right?), isn’t one of them.”

Well…in my defense, I did all ready say that I do I only like winners, didn’t I?

And right now, the outlook for America is a little iffy, at best.

So, maybe deep down I do mean to say they instead of we.

And if I did mean to say it deep down, would you like to know why I meant to say it?

That’s right, you got it.

Because I am American and as an American, I love to win.

Nothing wrong with that.

Winning, that is.

But depending on how things turn out, there just may be end up being something wrong with America; specifically, that it is no longer a winner, or even considered a winner, which may make it hard for us winners to continue to align ourselves with it.

But as far as winning in general is concerned, I’m all for it.

If you ask me, and even if you don’t I’m gonna tell you anyway…

‘Cause I am certainly here to tell ya…

That second place blows!

To me, if you come in second place then you ain’t nothing but a First Place Loser!

You can take all of your Second Place Trophies, and your Silver Medals, and any other award that is not plated in anything but pure, honest to goodness—because being first and being a winner feels so good and honest—Gold and shove them all up your lame, loser-of-a-logistical-shoot-for-shooting-waste and keep them there!

And right along with them, you can also shove right up in your lame, loser-of-a-logistical-shoot-for-shooting-waste-and-other-matters-and-by-other-matters-I-mean-BS, all of the loser enablers who, because they are such losers themselves, want to convince everyone, especially our youth, that it’s okay to come in second place (and by coming in second place you now know I really mean losing), and that it’s okay that not everyone can be a winner so don’t worry if you aren’t one either, okay. Because everything is just A-OK!, okay?

Ugh!

No! It’s not okay!

It’s okay to want to win.

And it’s okay to know that everyone cannot win at everything.

Those are okay things to know.

But it is not okay to think it’s okay to accept losing just because everyone cannot possibly win at everything.

Okay?

You know what?

Show me a good loser and I’ll show you…

A LOSER!

So, while you are shoving all of that other loser stuff up your lame, loser-of-a-logistical-shoot-for-shooting-waste-and-other-matters-and-by-other-matters-I-mean-BS, make sure you especially shove up there, and shove them especially high and especially hard up there, all of those god damn demoralizing and anti-American “Thank you for Participating Even Though You Lost” trophies that are so ubiquitously and harmfully handed out to every kid, and his brother, and his sister, and uncle’s cousin to boot, who we parents who only want to see that little sparkle in our eye just have fun and just be happy no matter what just so we slap them with each and every over-sized sporting and scouting uniform there is to slap on that little sparkle in that blurry eye of ours.

Big sigh…

God I hate to lose.

And I especially hate it when my sports teams lose.

If you have read my blog’s About page, you may remember that, since I am from the Cleveland, Ohio area, being a sports fan has always been very, very frustrating for me all throughout my entire, and by entire I mean from the very second I was born until now. And we can keep repeating that “now” from now until the day that a professional Cleveland sports team finally, and I mean FINALLY, wins the title of champion, which is an even better way of saying winner, in their respective sport.

Yup. I’m a frustrated sports fan, that I am.

And, unfortunately for me and all of the other nutjobs like me who refuse to realign themselves with any professional sports teams (teams that more than likely have won at least one championship in my lifetime) other than a Cleveland professional sports team (You might just be surprised just how many of us nutjobs there are like that.), we will probably remain frustrated for a long while to come.

And it is all because of all the losing that I had to suffer through the other day (Both my professional baseball team AND the TEAM USA women’s soccer team lost yesterday. Usually I could really care less about either one of them because I am not all that much into baseball, but Cleveland happened to be playing Baltimore yesterday and ever since Baltimore stole the professional football (Unlike baseball, I really do like watching football, even if it is not post-season play.) team from Cleveland, I despise all things that relate to Baltimore as far as sports are concerned. In fact, I even refer to the fans who root for Baltimore teams, regardless of where they are from (Just ask my buddy not-from-Baltimore-but-one-of-the-biggest -Baltimorons-there-is-Bob.) as Baltimorons, that’s how much I despise Baltimore sports teams. So, that’s why I was especially interested in the outcome of yesterday’s baseball game. And that is why it hurt so much when I found out via tweet from another “friend,” who is from the loser Detroit area and who is a fan of loser Detroit teams but at least he hasn’t yet sold out on them to become a Baltimoron as far as I know but regardless of what team he is backing I am quite certain he enjoyed telling me, that Cleveland had lost to the Baltimorons. And as for women’s soccer, I apologize women, but, overall, I am a nominal men’s sports fan at best so you can probably imagine how I feel about any sport that has the classifier of women in front of it. Nope. Doesn’t have much of a chance with me. (Nothing against Title 9, but it just doesn’t quite do it for me like a sexy Title 10 or Title 50 does. And it’s not that Title 9 reminds of all those damn Participation Trophies, or anything like that. No, it’s not at all like it’s a let’s-Divide-and-Conquer-our-limited-and-dwindlingrightbeforeoureyes-tax-dollars-so-that-everyone-can-play-but-we-all-end-up-losing-instead kinda thing. No, it’s not like that one bit, either. Nope, nothing wrong with Title 9 by me, that’s for sure…but I may have overheard some other men complain about it once or twice at the local sports bar. Maybe.) Unless, of course, they are a women’s sport team that represents America and especially if they are a women’s sports team that is going for the ultimate win in the sport they are playing, ala the other day when TEAM USA women’s soccer team was competing again TEAM JAPAN (Their women’s team, as well, I suppose, but I cannot confirm but I didn’t even watch the game.) (And I apologize, Japan, if that is not how you refer to your team, but that’s how we Americans do it over here.) to become the World Cup Champions (Wow! Is there any better way to say winner than that?), then, and possibly only then, will I be really and truly interested in women’s sports. And of course, with all of my interest highly engaged in the hopes that both of my teams would win the other day, they both ultimately, and without a doubt, lost. Frikkin’ losers!) that brings us both here, bathing uncomfortably together in this overflowing rabid froth of a blog post of mine.

Big sigh…

My New Anthem for Life

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David Grohl
David Grohl

The Foo Fighter’s new song “Walk” friggin’ rocks and, like most inspirational works of art do, it motivates me into action, particularly because some of the lyrics really speak to how I feel about what I have been dealing with this past year and a half and will continue to have to deal with for the rest of my life.

“Learning to walk again…,” lyrics from the song’s chorus, speaks specifically to what I have gone through while dealing with my neuropathy, the side effect from all of the chemo I got juiced up with before and after my bone marrow transplant. Because of the nerve damage, I literally have been learning to walk again, this time with numb, unresponsive lower legs and feet. Not having complete mobility has definitely given me a new perspective on the basic physical dynamics of living and it has taught me to not take anything for granted.

And as I think about it, “Wasting Light,” the title of album that “Walk” is on, also speaks directly to me. To paraphrase what David Grohl, the lead singer of the Foo Fighters, says at the end of “Back and Forth,” the recently released documentary about the history of the band: Grohl wanted to name the album “Wasting Light” because the older he gets the more he appreciates how short our time on earth is and how important it is to live his life as fully as he can within the limited time he is given.

True, so very true.

The Bliss of Ignorance

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One nice thing about visiting or living in a foreign country: not understanding the language.

When visiting or living in a foreign country where I don’t understand the language, public chatter becomes white noise that I can very easily tune out whenever I want. The beauty of that is, unlike when living in the States or visiting other English-speaking countries, I don’t have to listen to all of the stupid, idiotic, moronic, and embarrassing BS that people think it is necessary to say in public.

Ignorance truly can be a blissfully beautiful thing, indeed.

And why does it seems that those who do feel it necessary to say such stupid, idiotic, moronic, and embarrassing BS in public also seem to feel it necessary to do so in such an excessively loud and abrasive way?

Denial

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Even now, nearly a year and a half later, it still seems that my whole experience with leukemia isn’t real, that it just could not have possibly have happened to me.

Something of this magnitude only happens to other people.

I know what I am experiencing is real, but it is just so hard to accept because the consequences are so big, so out of this world. My mind just cannot get itself all the way around it.

How I feel about it is how I imagine one would feel during an out-of-body experience.

And I feel the same way about my lung disease, perhaps even more so because the data is so sobering.

And I feel exactly the same way about the disaster in Japan.

If you have spent any time at all on this blog, you know that Japan is just as much a part of me as is my arm, or kneecap, or heart, or any other part of me.

Just as with the leukemia and the lung disease, or as it would if I were for some reason to lose an arm, my mind is just not accepting the fact that so much tragedy has fallen on Japan.

The horror that I am witnessing on the television and the internet cannot possibly be happening to the country I know so well and love so much.

Something of this magnitude only happens to other countries.

Wishful Thinking

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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 of what we wish for, right?

My Cancer Class, 2011

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At the beginning of any new journey, maybe it’s starting with a new company, going back to college, or signing up for fitness classes at the local gym, it seems that you can easily identify those who are just starting out. Like you, they are the ones who are just learning the ropes of the new system. They don’t know exactly what to do, where to go, or how to get there. Like you, they just look new. Over time, whether intended or not, a bond will form between you and the group of new travelers and you will begin to identify yourselves as a sort of class. Maybe you will become friends with some of the people from your class or maybe you won’t, but the chances are you will always feel a special kinship with those who traveled on your journey with you.

My cancer journey was no different. Practically from the moment of my diagnosis, I began to notice others who had also just begun on their cancer journey. New cancer patients are especially easy to identify: they are the ones who have a constant stunned look of disbelief on their faces; they are the ones who are irritable, stressed, and anxious, not just from recently having learned about their disease, but mostly from the side effects of the steroids and other new drugs they had just started taking; and they are the ones who still have their hair.

After diagnosis, I was immediately admitted to the hospital for the first two weeks to begin my initial phase of chemotherapy and medications. From time to time I would see other new cancer patients as either I or they walked laps around the ward; or, I would see them pass by my door on their way to the little kitchenette for the always available ice cream or cup of noodles. Sometimes we would wave or nod our masked heads at each other. Oftentimes, we would just simply shuffle by each other without any acknowledgement.

After I was discharged from the cancer ward, I was admitted to the Inpatient/Outpatient Clinic. At IPOP, new cancer patients usually have appointments every day. Every day, my wife—my caregiver, my inspiration, and my guiding light—would pack me up and drive me to the hospital. The drive could take anywhere from 45 minutes to an hour and a half, depending on Baltimore traffic. When I got to the hospital, I would reluctantly don my mask, reluctantly disinfect my hands, reluctantly enter the clinic, sit down, pull my ball cap down tight over my freshly shaved head, and glumly wait to be called by the nurse. Meanwhile, my wife, always positive, always cheerful, would sign in for me in the registry, make herself a cup of coffee, grab a magazine, and then sit beside me and try to cheer me up. Other familiar masked faces would also be there waiting with their caregivers.

Soon my wife became friends with several of the other caregivers and, through her reports, I would be able to track the progress of the other cancer patients from my class. It helped me to hear about them from my wife. Knowing that others are on a similar journey as yours, that others are just as confused, just as sick, just as scared as you are, provides a certain level of comfort and a sort of release. I was able to let go many of my fears and better accept my condition because I learned that nothing that I was going through was unique just to me.

Unfortunately, there are many, too many, cancer patients in my class. And even though I was familiar with all of them and drew strength from their silent encouragement and solidarity, I only came to personally know a few of them by name. And of those, I only know the current fate of two, which is too bad because I often think about all of those faces who I had come to know so well and wonder how they are doing now. I try not to wonder who didn’t make it.

Next year my cancer class will graduate. Sometime next year, we will meet with our oncologist and we will be released from his or her care. Our disability insurance will stop and we will hesitantly and apprehensively return to work. After graduation, we will be free and encouraged to begin other new and exciting journeys, which is why graduations are often called commencement ceremonies. And when our new journeys do commence, we will look around and see that there are others who are also just starting the journey, too. And, while we will hope that we never have to travel down the same road as we did on the journey we just ended, we will know that we will all be better travelers for it.

After the Transplant

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Thinking back, the amount and potency of the chemotherapy that I received during phase one and phase two of my treatment were a pittance compared to what I received for my bone marrow transplant. During the first two phases I thought to myself, ha, this chemo stuff ain’t living up to all the hype. Sure, I lost my hair but it started growing back not too long after the end of each phase. And I never got so sick to where I had to become intimate with the toilet. Not so during the two weeks of chemo treatment before and after the transplant. The doctors really laid it on me with a vengeance then. I got pretty darn sick, especially in the mornings. It’s almost three months later and I would even say that I may still be suffering somewhat from the effects of the chemo I received prior to and after the transplant. And it doesn’t help any that I’m still getting a small dose of it shot into my spine every two weeks.

While I don’t get sick to where I have to pay homage to the toilet anymore, I do get some bad heartburn for a couple of days after the spinal taps. I also still get light-headed when I stand up and, because of my low energy levels, I can only contribute minimally to chores around the house. My counts are steadily rising to normal but they are all not there yet. My platelets are still low which makes it very easy for my skin to cut and bruise and very hard for the injuries to heal. I’m still anemic. It seems that I have a symptom of Graft Versus Host Disease (GVHD) in my mouth: it is almost completely dry all the time, which makes it hard to eat and sleep, and there are tiny bumps all over my cheeks and gums, which feel gross. I have poor circulation and swelling in my legs, especially my left leg. This is probably because the blood clots that I had at the beginning of all this were in my left calf and have left the veins and arteries a little worse for wear. The toes on my left foot are numb. My vision frequently blurs. And, I’m still mostly hairless which is really starting to annoy me; although some peach fuzz is starting to sprout about the chin.

Considering how bad I felt immediately after the transplant, all that I described above is almost irrelevant. I actually feel pretty darn good and I am very thankful for how well I am progressing and all of the support I am receiving. My days are always light and relaxing. I mostly divide my time between reading (my reading list is found at the bottom of this blog), cruising the Internet, taking naps, sitting by the pool, and watching the boob tube. I try to take long walks every other day or so. Fortunately I live out in the country so when I walk I get to experience the beauty of nature. I get to see wildflowers and woods and ponds and creeks and cows and horses and sheep and goats and all kinds of birds (if I’m lucky I’ll get to see majestic cranes either walking the creeks or flying above the tree line) and friendly folks along the way. My dog Shikibu, the best and cutest dog in the world, often joins me on my walks and she always makes them even more interesting and enjoyable. But probably the best part of my day is when, after the sun begins to set and the temperature cools down, my wife and I hop in the hot tub and spend quality time soaking, reflecting on our good fortune, and planning for our long future together.

Test Results

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Email from Kurt’s doctor:

The bone marrow biopsy report is not back. However, all the news thus far is excellent. His bone marrow flow cytometry shows no leukemia cells. The most sensitive test for detecting leukemia is the BCR-ABL PCR. This result came back as undetectable (meaning no leukemia). These are excellent results.

Sincerely,

[Kurt’s Doctor]

UPDATE: In a subsequent email, Kurt’s doctor said that the preliminary result from the bone marrow biopsy also shows no leukemia. The final report won’t be available until next week but everything is looking good. Additionally, the BCR-ABL PCR test is more authoritative than the bone marrow biopsy.

One Night

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dilantin-induced hallucinations
busulfan and fludarabine-laced dreams
black outs and cold sweats

It’s 2:00 a.m. There is a blue glow to the room as I lie on my back trying to sleep. I’ve been trying to sleep for a long time. My toes burn and my back is hot. My skin itches. The black motion of sleep hovers right above my eyes, slowly rolling back and forth, and up and down, and in and out, like lava in a lonely lamp. I pray for it to come down and put me under. Occasionally I feel its numbing tingles of unconsciousness seductively pulling me down. But just when I think to myself that I’m finally falling asleep, it pulls back and continues its slow dance right beyond my reach. After each tease, I am more awake than before. I want to change positions but I know that if I do the black motion of sleep will disappear completely. I don’t want to lose it so I will not move. No matter how hot it gets between the mattress and the back of my body, I will not move. No matter how much my skin itches, I will not move. My hand pulls to try to scratch at the itching, but I will not let it go. As I continue to watch the black motion of sleep and feel myself not moving, my head becomes heavy, much too heavy for the pillow. It is so heavy I no longer have the strength to hold it atop of the pillow and it begins to sink as if it were lying in quicksand. I must finally be sleeping I think and I feel relieved. But the black motion of sleep is still there, hovering out of reach. I am still awake. My toes still burn. My back is sweating. My body itches more than ever. I am still awake and yet my head continues to slowly sink within the pillow. My ears disappear and all of the low, humming hospital sounds are muffled out. I only hear my nervous breathing. My head continues to sink and I can’t lift it up to stop it. Soon my mouth will go under, then my nose, and then I won’t be able to breath. I know I have to force myself to lift my head out of the pillow before I suffocate but I can’t move. I try with all my might but it just continues to sink. If I can move something, open an eye, wiggle a toe, cough, anything, my head will stop sinking and I will be okay. But I can’t. I can’t move anything. Nothing moves. I am in a moving car, standing where front seat passengers normally sit. My head, upper body, and most of my legs extend through the top of the car. I look down to see who is driving but it is too far down and all I see is a shadowed figure behind the wheel. The night wind is cold on my face and I enjoy the sensation of standing while the car moves. I feel as if I am flying. We are on a familiar road, Campbell Road, and I see that the cows are not in the field. Their barn is dark. There are so many stars out the night sky appears as bright streams of light. I’ve driven down this road many times. It’s the way home. The Susquehanna Trail is up ahead and I instinctively feel my body trying to slow itself down in preparation for the stop. I see the stop sign in the distance but it doesn’t seem as if we are slowing down as we should. I try to communicate with the driver but the wind will not let any sound escape from my mouth. I try to squeeze myself down into the car but I am too big. The car begins drifting to the right. The right side tires bounce off the road and onto the shoulder. Gravel kicks up. Up ahead, parked on the side of the road, is a State Highway Patrol car. We head directly for it. I panic. I bend over at the waist and lean over the outside of the front window to look into the car so I can see who is driving. My wife is asleep behind the wheel. I stand up to cover my face from the crash but at the last second our car swerves away from the cruiser and makes the left turn without stopping, barely missing the oncoming cars. I scream. I look back, expecting to see the flashing lights of the cruiser in pursuit of us but the car remains parked on the side of the road. We have a right turn coming up quickly but our car drifts across the center line into the path of another oncoming car. The car swerves into the other lane and misses us. We continue drifting more into the left lane until we are once again driving with half of the car on the shoulder. Cars continue to miss us. We drift all the way off the road and into the grass and head directly toward a large tree. I hold my hands out in front of me to try to prevent the crash. As the front of the car crashes into the trunk of the tree, branches whip my face and my fingers grab for them. It’s 3:00 a.m. I have to pee. I lift my head and I feel woozy but I have to pee so I rush out of bed. Standing, I really feel woozy, drugged up even. I unplug my IV pump and wheel it with me. The bathroom lights hurt my eyes. My vision is blurry. I reach down for my urine decanter and the blood rushes to my head. I stand up feeling dizzy and unstable. I begin filling the decanter. The dizziness doesn’t go away and my legs begin to feel weak. My mouth begins to water. I feel a tingling sensation moving up my body and tiny black spots begin appearing before my eyes. I’m going to black out. I have to get back to bed before I do. But I haven’t finished peeing. I feel bile rising up my throat. The black spots get bigger. I can’t pass out yet. If I fall and hurt myself it may jeopardize my transplant. I feel sick. I have to puke. I finish going to the bathroom. I fumble with the lid as I try to snap the decanter shut. The floor spins as I bend down toward it. I set the decanter down and stand up. My head spins and I totally black out. Blind, I grab for my IV pump for stability. I push the pump in front of me for protection as I head back to bed. I make it. I sit down and feel my body rushing in every different direction. I see nothing but complete, pulsing black. It’s hard to breathe but I force deep breaths. Cold sweat emerges from every pour of my body. The cool dampness is relieving and calming. My stomach settles. I lie back down in the bed and watch the black spots slowly disappear as the blue glow of the room returns.

Feeling Pretty Darn Good!

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It seems the better I feel the harder it is to keep folks updated on how I’m doing. Now that I am feeling better I have more options to do other things other than to sit and think about how bad I feel. Now, mostly I sit around and read and write and take walks with the wife and eat all of the delicious, healthy, cancer destroying foods that she prepares for me. So that’s why I haven’t been blogging or tweeting as much. Besides, it’s redundant for me to keep posting: feeling good again today day after day. But since I’ve stopped getting the regular doses of chemo and I’ve been taken off of most of my meds, that’s exactly how I feel. In fact, I feel better than I have in a long time, even since before my diagnosis.

Yesterday I met with my longitudinal doctor, that is, the doctor who has been my consultant and adviser since I was first diagnosed and who will be with me until the end. I have been seen by a boatload of other doctors for a boatload of different reasons, but it is my longitudinal doctor who I depend on most. I met with him and his boss. The purpose of this visit was merely a formality to give me one last checkup and their final diagnosis and authorization for me to proceed with my transplant. Everything is good. My counts are perfect and based upon all the tests I’ve had…spinal taps and bone marrow biopsies…the amount of cancer in my body is less than 0.04% or something like that. Pretty good, indeed.

I have only one more consult with a doctor between now and when I get admitted back into the hospital on 3/23/10. The consult is for the heart and as far as I’m concerned its just a waste of time…an evil plot to make sure I don’t stay away from the hospital too long.

Like I said, on the 23rd, a week before my transplant, I get re-admitted to the hospital so I can begin getting juiced up with some new kind of chemo. This kind will completely kill my bone marrow in preparation for the transplant. I’m definitely not looking forward to the chemo crud again, but it will mean I am one step closer to getting to the transplant and beyond. Again…pretty good, indeed.

So, as far as my blogging and tweeting go, no news is good news. I reckon once I get juiced up again I’ll be back to complaining on a regular basis as to how bad I feel. Misery loves company.