Happy Fatherless Day: For Those of Us Who Have Lost Ours

Yeah, that title’s probably a little emo.  Cut me some slack.  It’s late, I’m sleepy, and any time I think about my dad I get a little mopey.

But it’s true.  Yet another Father’s Day has passed without Dad.

Billy Edward Owens, Jr. died unexpectedly on a Thursday in December 2006.  My wife Lacy, who was my fiance at the time, had to come find me at work to tell me.  It was probably the single most emotionally crippling moment of my life.

My parents had been divorced most of my life.  I don’t care to air the family’s dirty laundry in public, but suffice it to say Dad struggled with mental illness–not the least of which was anger management.  This created an unsafe environment for my mother, and after a particularly unpleasant series of events in 1984, she took us and left.

I was three years old, but I still remember bits and pieces of those events.  Dad’s side of the family doesn’t talk about it much, and Ma only has her side, so I have an iffy account at best.  But I feel like it’s not information I need to have.  And here’s why:

I loved my dad.  I was very close to him, even when 800 miles separated us.  We spoke frequently on the phone.  I know his life, every day, was a struggle.  He battled demons he never wanted me to know about.  But despite all that he carried, he was a sensitive, loving dad.

Sure, his temper had a bit of a hair trigger.  But he didn’t hit his kids.  I think he spanked me once when I was probably about six, and it broke his heart.  I don’t remember why.  Probably for fighting with my sister.  That was something he absolutely would not tolerate.  He told me many times to never hit a girl.  Again, at risk of airing the dirty laundry, he once said he never wanted me to make his mistakes.

Dad was an amazing singer and he idolized Elvis Presley.  I haven’t heard him sing in easily 20 years, but I remember his voice being pure sonic gold when I was kid.  He would sing to my sister an me, play his guitar, just for us.  He would perform at family events.  He was kind of a ham.  My grandma gave me one of his old reel-to-reel rigs and a bunch of tapes.  He’d recorded himself singing on some of them apparently.  I can’t bear to try listening to them.

And he was a clever bastard.  He could fix almost anything.  Sure, it was a bit redneck, but it worked when he was done, leftover parts and all.

I learned to play guitar because of him.  I wish I had inherited his voice, but I didn’t.  I FINALLY learned to ride a motorcycle because I rode so many places on the back of his.

I wanted to be like him in so many ways.  I ended up like him in more than a few.  As I get older, I look more like him, only everything is in a lighter hue.  He was ruddy skinned and dark haired, where I’m fair.  But as the aunts and Grandma say…the eyes.  The eyes are exactly the same.  As time carves the wrinkles into my brow and erodes the hair from the crown of my head, I tend to see me when I look at pictures of him.

I don’t really express much emotion outwardly.  I tend to live in a haze of annoyance or indifference.  But Dad…he was a storm of life.  He laughed and grinned and cried and roared his fury out loud.

I saw him last in June of 2006, right after Lacy and I got engaged.  He .was having a hard time.  Emphysema was tearing him down, and the prednisone (goddamn devil drug) he was taking to function was wrecking his body.  But he was so happy.  He loved Lacy right away.  I was excited for him to be at our wedding the following May.

But he wouldn’t be there.

No one knows for sure what took him.  His heart and lungs had never been good.  Between the COPD and the prednisone, it’s assumed his heart finally gave up.  He tried to call me a few days before he died.  I was home, playing video games, and I screened him.  I thought I’d call him back later.  Later became tomorrow, tomorrow became the next day.

Then he was gone.

On this day, this invented holiday devised to sell greeting cards, I have a hard time.  After a decade, the pain is just as sharp.  Time only teaches you how to ignore it.

I have rarely regretted my own decisions.  Not calling him back is definitely one.

I regret that he wasn’t able to be right there while I grew up.  When my first love came to a remarkably unpleasant end.  When I met the woman who would become my wife.  Those were not things over which I had any control.  But he always made sure to have as much presence in my life as he was able.

Another man would help raise me, someone else taken far too soon.  But today is for Billy Edward Owens, Jr.

I miss you Dad.

 

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Happy Fatherless Day: For Those of Us Who Have Lost Ours

Please Don’t Run Over Me

For those of you who aren’t aware, May is Motorcycle Awareness Month.

So, I think “awareness” months, days, whatever are pretty stupid. A lot of them cover perfectly legitimate topics of which people should be aware, but aren’t.  Which is why we have some celebration of awareness for them: people are dumb and don’t pay attention.

This is doubly concerning to motorcyclists (including myself, my wife, and several close friends), as many people are not aware of us when it matters most: ON THE GOD DAMN ROAD.

I will say this doesn’t even apply solely to the small, fast moving minority of traffic that is motorcycles.  People don’t even pay attention to the other cars on the road anymore.  But that is a different story.  Today we do motorcycles.

We’re small, quick, have crappy lighting, only take up part of the lane.  We can be lollygaggers or adrenaline junkies or anything in between.  But I want to take this opportunity to shed some light on motorcyclists as a whole community.

I’m sort of an ass, though, so I’ll mock the stereotypes when I get a chance.  Because it’s funny.

We’re not all “bikers.”  And I’m not talking about those Power Rangers tank-humping their crotch rockets, either.  Forget the Sons of Anarchy  horsecrap.  Black leather and a noisy V-twin do not equal 1%er.  Many of us are regular folks with regular jobs with regular lives who just like to ride.  I wear black leather.  But hey, you can’t do better for abrasion resistance.  Dress for the slide, not the ride, they say.  I’m not in a club and feel no need to announce my independence either.  It’s not a social experience for me.  It’s a ride.  It’s me and the road.  If I’m in a group I’m at the mercy of the weakest rider, the slowest bike, the smallest fuel tank, and the twitchiest bladder.  If it’s just me and wife and a friend or two, it’s nothing but highway until the fuel tank is empty and the peepee tank is full.

Not that there’s anything wrong with being a “biker.”  I know a lot of cool cats in clubs.  Met a couple pretty cool 1%ers a time or two as well.  But it’s not my scene or my label.  I’m just a motorcycle enthusiast.  And regardless, most of us are decent people, so don’t treat us like lepers.  In fact, the label “biker” is unfairly stigmatized in general.  And it sure is a lot easier to say that “motorcycle enthusiast.”

Sportbike guys aren’t all squids, either.  Yeah, you can laugh at the moron in shorts, tank top, flip-flops who somehow remembered to drop that $600 Shoei on his head.  Especially if his manner of greeting you is a wheelie (fucking goon).  You can laugh at the accountant cruising around town in his khaki shorts and the freebie shirt he got at the Harley dealer, cranking out mile 2500 in four years of ownership.  But some of us spend all winter pining for the day we get our knees in the breeze, till we can ride out the old fuel, wash off the garage dust, and get out to see the world.

Motorcycles accelerate quickly and handle well. Even my bike, a beast by any standard, has like a 5.5-second 0-60.  That’s fair by cruiser standards but slow if stacked up against many other bikes.

How many common cars can make that claim?  Not your Subaru Outback.  Now quit trying to cut me off so you get to the Walmart parking lot first.

In addition, unless you’re in possession of a combination of talent, bravery and equipment, even an indifferent rider will outpace you in the corners.  So please, for the love of all you hold dear, STOP TAILGATING ME THROUGH THE STRAIGHTS AFTER I DUST YOU IN THE TWISTIES.

Motorcycles stop REALLY fast.  No, seriously.  Really fast.  And if we’re forced to stop really fast, our stability can be badly compromised, resulting in a spill or slide.  So get off my damn back fender, or I swear to whatever power you worship that I will punch you in the throat.

Probably not.  I don’t need my ass kicked.

Motorcycles, and their riders, are often hard to see. Now, we all know we should wear high-viz gear.  I’m not good about it.  But my bike is big and red and should be obvious.  However, a lot of riders have dark gear and dark bikes are just sort blend in. As a driver, you can avoid parking on our heads by looking both ways and carefully checking your blind spots before changing lanes.  A good rider will stay the hell out of your blind spot.  You should probably also GET THE FUCK OFF FACEBOOK while you’re driving.

Occasionally, I hear gripes from the more ignorant cagers grousing us for not being careful.  Listen here, we’re ALWAYS careful.  Every ride is an exercise in risk management.  I’m not scared of weather or dark or any condition short of sloppy gravel.  But a soccer mom in a Tahoe?  Terrifying.  She’s looking at Pinterest, yelling at the kids, drinking coconut water, and complaining about one of the other soccer moms to her soccer mom friend on the phone.  Basically, operating a 5000-pound SUV is fifth on her list of priorities.  We see that.  We do our best to avoid.  We assume EVERY SINGLE ONE OF YOU BECOMES PROFOUNDLY STUPID the second you climb behind a steering wheel.

So…look twice.  Save a life.

 

Please Don’t Run Over Me

What Am I Gonna Do With Myself Now?

Today I finally made my decision.  In typical Billy fashion, I pretty much waited until the last possible minute.

I tendered my resignation as Service Manager at work.

For 5 years I have managed a local tire and lube shop.  Before that, I had been a service technician since 2004, and a sales associate since 2002. Basically, automotive service has been my whole adult life.  I’ve worked in the same place for the same people, more or less, for 13 years.  And now I’m going to break one of my cardinal rules of internet usage: share details about my work.

Truth be told, management could’ve replaced me two weeks ago. But I’ve known the store manager and one of the shift managers for over a decade.  In the last 4 years these men have offered me their support and understanding, and kept me in my position when they would not have been required to.  They accommodated my need to miss work for chemotherapy and doctors’ appointments and trips to Phoenix for Mayo Clinic visits.  Some of my time was protected by the Family and Medical Leave Act; much of it was not.

Moreover, despite my neediness, they’ve always made me feel valued.  They’ve commended my ability and knowledge over the years, and I appreciate them both for that.  I won’t name names–that’s bad form–but they know who they are, though I doubt they’ll ever read this.

To speak of my own merits I must admit I took my job very seriously.  Sure, it never really fulfilled me; I merely saw working as a way to pay bills and have fun toys.  But I was good at it.  I took pride in my work and ownership in my department.  How well it performed was reflected on me.  I cared so much it was going to give me anxiety disorder, and I was constantly frustrated no one cared as much as I did.  We’ve always suffered from high turnover (good ones move on and bad ones get bounced), and once upon a time I could take on the roles of service manager, merch supervisor, tech, and sales associate with little more than a spike in blood pressure.  But I can’t do that anymore.

I have to admit in the last year or so I have had to shift priority from putting my energy toward my job.  Sadly, my failing health has demanded it.  i had to miss quite a lot of work in the last 2 and half years from the transplants and the graft-versus-host disease.  And chemo, despite my resilience, eventually wears me down.  It takes weeks, but it makes me pay its price eventually.

I just can’t do the job anymore, physically or emotionally.

Physically, I can’t stand on my feed all day.  I can’t lift 50 pounds over my head.  I can’t manhandle rim and tire assemblies.  My shakes are often bad enough I wouldn’t be able to properly thread a lugnut onto a wheel stud or a drainplug into an oil pan.  I’m up and down more than a little from my steroids.  Some days I’m so tired and sore I just sleep.

Emotionally, the idea of returning as service manager, even if I were physically able, fills me with dread.  The job’s always been stressful.  Stuff gets broken, people call in, customers yell in your face, management busts your chops about stuff you can’t control.  Thats life; that’s work.  But each time I have to leave, the place is a little worse when I come back.  Each time, more people have quit, business has suffered, and standards have not been maintained.  This I blame on the weak leadership in which I had to place my trust.

And yes, it is entirely likely the people to whom I refer–who’ve since moved on–may read this.  And be pissed at me.  But seriously guys, you both had one foot out the door for a long time.  You didn’t have to put in the effort to do me a favor, but couldn’t you have done it for your own sakes?

When I returned to work last August after my liver failure scare, things were in a shambles.  By the end of October, I knew I’d reached my breaking point.  I no longer had the strength to carry the place, or the energy to bully or persuade compliance from my subordinates.  I was buried in new associate training and playing catchup on all variety of things, as well as being understaffed, while still being the only person who could do my job.  Add to this my medications being a bit unbalanced, and there often days when I couldn’t even drag myself off the couch.

And so, after much deliberation, I’m hanging up that hat.

It is possible I will not return to work.  Only time will tell.  Logically I shouldn’t, with my heavily suppressed immune system and lack of immunity against childhood illnesses.  A retail environment is not really a safe place for me and how I’ve avoided becoming seriously ill over the last couple years is anyone’s guess.  I hope that my health improves in the next few months and I can be re-immunized to mitigate some of the danger, and possibly return to work part-time.  I’ve always worked.  I struggle to fill my days without that 9-hour block of time already accounted for.

I struggle with this decision as I hate to consider myself “disabled.”  But I have to acknowledge that my body can’t do what it used to, regardless of what my wise-ass mind thinks.  Also, I’ve been in the same line of work for 13 years.  It’s a tough row to hoe when I consider that I just can’t do it anymore.  I mean, sure, my knees and back woulda been shot before I was 50 anyway, but damn…this is a bit early for my taste.  In the meantime, I hope to write more, play more music, read more, learn more.  I want to spend time with my wife, travel, maybe talk to my friends every once in a while.  Perhaps I’ll learn a new skill.  I guess I’ll just have to see where things go from here.

What Am I Gonna Do With Myself Now?

Risky Business

Initially I was thinking I’d use this blog to post my gripes about the world in general.  I thought, “Well, let’s get the cancer bit done because that’s gotten to be a stupid long story that I’m tired of telling people.  Get the whole thing out at once. Then we’ll do some fun stuff.”

By no means did I intend for any of it to be lighthearted fluff.  I’m not lighthearted.  No fluff here.  But maybe some observations of the things I find confusing or ridiculous interjected with my sardonic and often dark humor.

Well, I’m not sure I have much of that in me.  I spent a few hours last week dinking around with an article of such a nature and after a few paragraphs (Billy-paragraphs) it felt contrived.  I was having trouble caring about the topic I’d chosen.  I had a flashback to college and my English instructor hassling me about supporting my thesis.  Newp.  I ain’t gonna trudge my way through anything here.  This is for me, not a college term paper.

So today I’m going to do something that should come more naturally.  Write what you know, as they say.  I know me, so I’ll share something about myself that reasonably few people actually know.  Many might suspect, but the people who actually know I can probably count on one had.

I am atheist.

I don’t intend for this to be a “HEY LOOK I’M ATHEIST” sort of thing.  I’m not announcing it for attention or to be inflammatory.  If I’d wanted that this article would be pointless because everyone would know.  As per the joke, “An atheist, a vegan, and a crossfitter walk into a bar.  I only know because they told everyone when they got there.”  Nah, that ain’t how I roll.

Now, some people who didn’t already know this fact, which I have quietly kept to myself, are probably wondering why I’m atheist from the spiritual or religious point of a view.  Perhaps a few who suspected are wondering this as well.  Not surprising since one thing I have noticed is that if you look and act like the people around you, they will assume you believe what they believe.  I don’t know if that’s an American conceit, since living in southern Idaho has giving relatively little interaction with other cultures.  However, I suspect it might be a trait common to many humans.

I have what has become–barring some rapid progress in cancer research–an incurable illness.  Facing mortality is frightening on a level that cannot be understood by anyone who has not experienced it.  Many turn to religious or spiritual beliefs to guide and comfort them.  I always found the trappings of religion or anything resembling a belief system to feel incredibly alien.  I felt as if I were putting myself in a box where the only things I can believe are in that box and to question them is an offense.

As technology and our understanding of the universe and how it works grows, the box begins to feel very, very small.  I don’t know how anyone can choose the box and still peek out into the universe and not wonder.  I don’t begrudge those who do; I was raised in a home that could be categorized as “passively Christian.”  I was never forced to go to church.  We didn’t say blessings over our meals.  I was never led to believe any particular thing, for which I am grateful as it allowed me to look wherever I wanted for meaning and strength.

I begrudge no one their own beliefs.  I don’t need to share them or even understand them, but as long as those beliefs don’t hurt others or discriminate against anyone.  If those beliefs give you a feeling of fulfillment and purpose, that’s great.  Power to ya.  I’m not bothered by religious iconography.  Have a nativity scene in your yard or put a cross on the top of your house at Christmas.  You can’t put one in my yard, but it’s my yard.  I actually appreciate it when people say they they’ll pray for me, or use phrases like “God bless.”  No, I don’t believe it will make any difference, but to me it indicates those people want good things for me, and maybe they lack the power to help me themselves.  You wish me whatever happy holiday pokes your monkey.  Short of wearing a sign, there is no way to know my religion–or lack thereof–and I don’t expect strangers to know anyway.  Besides, I celebrate Christmas.  Why not? There’s a lot of good stuff about the holiday that’s not specifically Christian.  Also, presents and food.

I will not pretend my journey was easy.  It took some time.  I even tried to find religion once…but it was because I wanted a girl to love me and that is a terrible reason to do such a thing.  Also, it didn’t work and it took me a while to accept the fact that it was something wrong with her, not me.  And that is a story for another time.

While I have been decidedly atheist for some time (and sort of a shifty apathetic agnostic before that), I read a quote from Epicurus a couple years ago that sums up how I feel in the simplest of terms: “Why should I fear Death? When I am, Death is not. When Death is, I am not.  How can I fear something that only exists when I do not?”

I believe death is the ultimate end.  I believe only oblivion waits at the end of life.  But that in itself is not frightening; no, there is no sensation, no consciousness.  How can anyone be afraid of that?  And because I believe there is nothing after, well, that brings us to the very core of my beliefs.  We only get one chance.  There is no forgiveness.  No punishment.  No reward.  Everything we do in this life is all the difference we will make.  How we treated people, how we acted, how we spent our years.  And not because it will be tallied into our entry to one afterlife or another, but because it is how we will be remembered.

And I agree that’s sort of a tricky thing, since sometimes the trauma of loss causes us to paint our loved ones in a more forgiving light.  And I’d like to think that’s because the good they did outweighed the bad.  Also I believe you don’t have to be some sort of saint, rescuing babies and puppies from fiery plane crashes in the ocean while under attack by terrorists.  I think it’s all the little things people do that really make them good.  Giving some dude bus fare.  Rescuing a homeless animal. Not spraying that toddler in the face with a squirt bottle even though he won’t shut up.

Okay, so that last might be specific to me.

Overall, I feel I have not done a great job.  I have been cruel, dishonest, selfish.  If I believed in the Seven Deadly Sins I’d get dinged for Wrath and Sloth for sure.  During my teen years I often parroted what I heard from people around me, resulting in foolish prejudices (they’re all foolish).  I could have done better.  And now, even though most folks would never guess I’m even a cancer patient, I can feel the ol’ timeclock ticking.  I don’t know how long I have–I guess no one does–and no one’s willing to give me an estimate.  It depends on how much more abuse my body can take.  And this old vessel is starting to feel a bit frayed on the edges.  I think that lit a fire under me to just in general let go of most of my old, stupid hatreds and just be a decent person.  But I wish I could do more most of the time.

I guess it all boils down to doing good things because they are good.  But there’s no need to be perfect.  Just be decent.  Do right not because an ancient, hard-to-understand book, or a man in a robe, or a group of people tell you it’s right; do it because it is right.  Treat people with respect and remember that everyone has the same right to exist, to live, to worship however they see fit as long as it doesn’t hurt anyone else.  I want to be happy, and I don’t want to rob anyone of their happiness.  I expect the same.

So then…in what do I believe?  A girl I once dated, a Christian (a different girl than the one for whom I attempted a conversion), asked me that question.  I was in my early twenties, as apathetic an agnostic as one could be.  I answered, “gravity.”

That was a remarkably stupid answer.

Now that I’ve had some time to consider the question–more than a decade–I realize that even though that’s a stupid answer, it’s sort of true.

I don’t believe in a god or a grand plan, intelligent design, fate.  I instead marvel at this universe believing that it is a product of pure happenstance.  Somehow it all came to be through the random collisions of molecules in the void.  The swirled and collected and condensed, formed stars and planets and galaxies.  Formed life.  Which evolved into us.  Sapient life.

And to me, that is the grandest miracle that could ever be.  Here we all are, and we can look out at the universe and wonder.  And it was all an accident.

But as a person in a constant state of self-evaluation, I could be wrong.  I don’t know for sure, and I don’t think anyone can.  I think humanity will be a distant memory before it ever unlocks the secrets of the universe, and likely our destruction will be at our own hands.  I don’t have the answers.  Just the best we can do with our limited understanding based on what can observe.

There are times when I hope I’m wrong. Times when I want to reach out to a higher power and beg he/she/they/it takes my wonky-ass life and just fuckin’ straightens it out.  Times when I hope there’s an afterlife.  My dad died 9 years ago and I miss him.  Someday far too soon I will leave behind my wife, and it would be nice to know that my last day on Earth would would not be the last time I see her. Unfortunately, it seems no one gets to report back.  And I just can’t hold to these beliefs.  I want to believe in Santa Claus too, but I hung that up when I was 8 or so.  So instead I will work to make my last years count.

So here’s the rundown: atheist, existentialist, fatalist.  Yup.  Recipe for confusion right there.  Toss in the occasional foray into moral relativism, and it’s a wonder I’m not an alcoholic.

Now on your bikes everyone, and decide whether you’ll unfollow/unfriend me.  I don’t want that to happen (actually I unfollow people all the time), but I respect your decision to do so.  Till next time.

Risky Business

Disclaimer: Writer is NSFW (Not Safe for Wussies)

I’m sitting in the chemo suite getting an immunoglobulin infusion (my wrecked immune system tends to start whimpering after a while under the punishment of 3 immunosuppresants) and I’ve got 5 hours to kill.  Thankfully these chairs are comfortable.

I want to use this opportunity to warn anyone potentially reading my brain noise that I will say offensive things.  I will make jokes and use words and phrases that are considered racist, misogynist, intolerant, or callous.  I’m none of these things really, but I’m sort of awful and I think awful things are funny.  There is not a single card in Cards Against Humanity that puts me off.  If you don’t know what that game is, you probably shouldn’t play it.

It is possible I will say some things with which you do not agree.  I promise I will ever point at a single person I know and say, “You are wrong.  Your beliefs are wrong.”  That is not my purpose here.  I don’t seek to single out anyone, or make anyone feel bad.  This is not personal.  I am merely sharing my thoughts.  It’s okay if you don’t agree.  It’s okay if you think I’m wrong.

I’m not though >.>

On the whole, I’m basically a “live-and-let live” sort of person.  I don’t really care much what anyone does as long as what they’re doing doesn’t hurt anybody.  I really don’t care who, what, why, or how other people worship.  I don’t care who’s having sex with whom or who they want to marry.  Ain’t my business unless I’m one of the parties involved.  I think people should have the freedom to be happy and do the things they want to do.

But I also reserve the right to be a judgmental prick.  I have strong opinions about things, and I’m gonna share a few of them in a sort of general manner now, so anyone reading might get an idea of what’s in store for them.

I make the effort to be open-minded, but sometimes I fall prey to old prejudices and use stereotypes to make decisions about people.  I think this is a normal thing.  I have spent some time being a bit counter-culture, being “non-conformist” (a description I actually hate).  In my teens and early twenties, i was your stereotypical “metal head.”  Ripped jeans, boots, band shirts, long hair.  Leather wristbands, chains, iron crosses, black motorcycle jacket.  I’d wear that damn jacket when it was 90 degrees because I thought it was cool.  I sort of grew out of it; just took too damn long to get ready to leave the house.

In spite of that, I always understood that breaking from the herd would single me out.  If I had trouble finding a job or getting people to take me seriously, I had no one to blame but myself.  I didn’t look “normal.” I looked like a hooligan.  It was my battle, and it was one I chose.  No whining from me.

In light of that, I become very frustrated with anyone who complains they’re victims of discrimination because of how they choose to look. Be it because of their dress, their piercings, their tattoos, their hair style…listen dingus, you picked those things.  You want to look like this.  You don’t get to bitch if you choose to not fit in and then don’t fit in.  Suck it up.  If you cover your face in job-stoppers, you better be ready for two career choices: tattoo parlor or fast food. And if you have no artistic talent, well, yes, I would like to make that a large.

I hate bipartisan politics with every fiber of my being.  I think it undermines the will of the people.  We are compelled to choose a side and the other opinions be damned.  People will toe the party line even if their candidate is completely insane.  We climb into the box and listen to the propaganda and stop thinking for ourselves.  It becomes an “us and them” situation. I would urge people to shirk being a Repubican or Democrat, a liberal or a conservative, and just have an opinion.  Think. Learn. Research if you don’t know.  But ignore the rhetoric and hate-mongering.

Of course, I’m not sure it matters anyway since corporate interests and the joke we call the electoral college more or less neuter the populace when it comes to choosing leadership.  But that’s a story for another time.

I distrust organized religion.  I’m confused by the contents of the internet.  I don’t like things that are popular, which sometimes means I don’t give them a fair shake.  These are all topics for other articles because I’d rather this not end  up running 20,000 words. I don’t even know what to think about this whole hipster thing.  Technology frightens me.  The list goes on.

I hope to share all these thoughts and opinions and more, and I hope everyone remembers that this is all they are.  I don’t want to alienate my friends or loved ones, or damage anyone’s feel-bads, but these are the prices we must pay if we choose to express ourselves freely.  If you got squishy feel-bads, just unfollow. The rest of you, shut up and like it.

Disclaimer: Writer is NSFW (Not Safe for Wussies)

Maiden Voyage

Here it is.  The pilot run.  I have hesitated at the idea of blogging as I am, in general, opposed to the concept.  With few exceptions that actually border on fiction, I find personal blogs to be ego-fueled nonsense, much the same as the YouTube videos people post of themselves.

I confess this blog is no less an example of ego-fueled nonsense, but I will try my best to refrain from pointing out my own greatness.  Please disregard my URL.  And I’d also like to state future entries will not all be this…heavy.  This one is clearing out some crap.

At any rate, this first entry is to get everyone up to speed.  I have been remiss in posting updates on Facebook, since I loathe Facebook and still find myself checking it every hour or so out of boredom.  I can no longer recall what I did before smartphones, but I suspect it involved other humans in the same room.  But I digress, that is a discussion for another time.

This is a public blog, but I’ll begin sharing it amongst my Facebook friends, as they might actually care what I have to say.  In light of that, most of you are aware to some degree of the events of the last four years of my life.  But here’s the rundown from 2012 to 2015:

March 2012, I was sitting at this very computer (yes, it’s quite obsolete), at this desk (though in a different room) idly running in circles and chatting with my online friends while playing Star Wars: The Old Republic.  I was about at the end of my rope with the game, but honestly my group and I were just killing time until GuildWars 2 came out, which we played to kill time until Final Fantasy XIV didn’t suck anymore.  I leaned back in my chair, and stretched my left arm across the right side of my neck.  I stopped as I noticed what appeared to be a tennis-ball-sized knot right above my clavicle.

WHAT THE FUCKING FUCK?!  I had just shaved the night before! How could I have missed something like this?

I checked the other side for consistency, as if this might be some unusual but normal part of my anatomy.  A smaller lump above my left clavicle, about the size of a golf ball.  In a panic, I very quickly consulted Google.

Never consult Google for medical advice.  Terrible bedside manner.  A search thread of “swollen lymph nodes above collarbone” immediately returned a result of “Hodgkin lymphoma.”

Doing my best to not take the internet seriously, I paced the house while I waited for my wife to get home.  When she walked in the door, she could tell I was wound up.  I made her feel the knot in my neck, asked her what we should do, and her suggestion was the ER.  I talked her down to a local urgent care clinic, which was probably not that great of an idea in hindsight.

At the clinic, a young PA-C came in to examine me.  After palpating the extra head growing out of my collarbone, all he could say was, “Dude….whoa.”

Yeah, Google won the bedside manner contest that day.

However, he made no bones about the fact that, while this could be infection, it was far more likely they lumps were tumors.  He referred me to the internal medicine clinic at the local hospital.

Next came a battery of blood tests to eliminate other possibilities.  A CT scan showed a number of other growths throughout my upper chest.  I was then referred to radiology for a core-needle biopsy of the large tumor on the right.  This was a bit of a fiasco as the PA to whom I was referred at the internal medicine clinic apparently ordered a thyroid biopsy (whoops).  We headed that off when I showed the radiologist the monster on my neck.  However, the results proved inconclusive as they showed only necrotic tissue since the growth had outgrown its blood supply.

I was then referred to a surgeon to have an excision performed.  This was my first experience with surgery and general anesthesia.  Let me tell you, the stuff they give you before they wheel you back to the OR is freakin’ awesome.

The surgery went well (obviously), but it took some time to get back results.  Local pathology couldn’t agree on what they saw, and my samples were sent to the University of Utah.  On April 10 2012, I was finally given a diagnosis: nodular sclerosis Hodgkin’s lymphoma.  God dammit, Google.

It was my surgeon who called me with the results, for which I was grateful.  He’s a kind man, with a good bedside manner.  He encouraged me that this cancer would not be a death sentence.  Cure rates run above 80%.  Most patients tolerate treatment well, and since I was asymptomatic, the treatment would be harder on me than the disease.  He felt it didn’t look bad at all for me..  I took his words to heart, but the news was hard to hear all the same.

I had cancer.  I would need chemotherapy.  I would feel sick.  My hair would fall out.

I had cancer.

He sent me along to the local cancer center, in the hospital, where I would meet the hematologist/medical oncologist who would put in a very respectable amount of effort to keep me alive.  I have grown to like and respect this woman greatly, and am happy to be her patient, even when she growls at me for doing stupid crap.  Between her and my wife Lacy, I actually can’t get away with anything.

The doc was also very positive after seeing the results of my PET-CT, and on May 21 2012, I started first line treatment: ABVD chemotherapy.  Most chemo regimen names are in odd acronyms or combined words to make them easy to remember; in this case ABVD stands for adriamycin, bleomycin, vinblastine, and dacarbazine.  At the orientation class I was warned my hair, which was past my shoulder blades at the time, would fall out a couple weeks after my first treatment.  I might feel nauseous, but there was medicine for that that worked very well.  I might feel tired.  But a big deal was not made of it.  It seemed cancer treatment was not as nasty as the Lifetime movies would have us believe.

And it sort of wasn’t.  For a day or two after treatment, I would feel a bit urky or tired.  But it was months before it ground me down.  Months before my hair fell out, much to the surprise of all the oncology nurses  in the chemo suite.  In all honesty, it was really rather uneventful.  I kept working.  I kept going on motorcycle rides.  I did all the things I liked to do.  I never really felt like a cancer patient.  And best of all, it seemed the treatment was working.  The tumors seemed to be melting away.  I became hopeful.  Stupid man.

But…”nothing gold,” as the poem goes.  In November 2012, I noticed by accident one day the knots on the right side of my neck seemed to have gotten bigger.  Again dread gripped me.  Could it be?  Could the treatment have stopped working?  We hadn’t discussed that possibility at all.  Were then even other treatments?  Would I die?

I saw the doctor a couple days later.  She was hesitant to discontinue ABVD before the sixth and final cycle she’d planned.  But she quickly set in motion a consult with a stem-cell transplant program at the Boise branch of the hospital.  As I finished the final cycle of therapy, I learned my insurance would not cover a transplants at the Boise hospital.

The hell?

Well, it turns out that’s because my insurance requires transplant patients (besides kidney and cornea) to be sent to what they call a “center of excellence.” In my case, this would be the Mayo Clinic in Phoenix, Arizona.  And not only do they cover 100% of transplant-related expenses, they also pay for travel, lodging, and issue a per diem for expenses.

I guess that’s acceptable.

In December, Lacy and I traveled to Phoenix to meet my transplant hematologist for the first time.  She was a pleasant lady, and listened to my concerns, and explained the process of an autologous stem cell transplant to me very carefully.  She didn’t sugar-coat anything; while this was my best chance for cure, it could still be dangerous.  The conditioning treatment would eradicate my existing immune system, leaving my defenseless against infection.  I would be brought in and my own stem cells would be harvested from my blood via a process called apheresis, which is a little like dialysis.  I would receive a “mop-up” regimen to reduce or eliminate the tumors I had.  She made certain to explain that I could not rely on this regimen for curative potential.  Once the cancer was acceptably controlled, I would be sent to the 4th floor of the hospital for conditioning treatment and transplant.  I would likely be home in a couple months, but the possibility existed it could be as long as 4 1/2 or 5 months.  I was not put at ease by this news, but I was being assured by two oncologists now that this was my best hope for cure.  And I wanted to be cured.

I went home and started the mop-up treatment.  It was called ICE (ifosfamide, carboplatin, and etoposide).  Each treatment took three damn days, two of which were spent as an inpatient while the ifosfamide ran its 24-hour drip.  The carboplatin knocked out my hair–which had just grown back–in about a week.  The whole process generally left me rather exhausted, but I soldiered on.

In February 2013, I returned to Phoenix for apheresis.  We were there a couple weeks while I was pumped full of stuff to stimulate bone marrow growth.  They stuck a venous catheter in my neck…that was interesting.  A friend got me the hookup on a motorcycle trailer, and we towed my Cross Roads to Arizona to enjoy what was some serious off-season riding for us Idaho folks.  Then it was back north for some more ICE.

Phoenix again in late March, this time for the serious business.  One year after my diagnosis, I was admitted to the hospital for my autologous bone marrow transplant.  It would be a week of high-dose chemotherapy.  I barely remember that week.  There were three drugs, but I only remember undiluted etoposide and carmustine.  The carmustine flat fucked me up.  I had fevers, chills, uncontrollable body-wide tremors, nausea, vomiting…it was hard.  I was sick.  I was trapped in a little room that had a window looking into the hospital foyer; I couldn’t even see outside.  I couldn’t see the sun.  I was absolutely miserable, and for the first time I could feel my will eroding.  I was hating, really hating, every single minute.

But once I got past the conditioning, things calmed down.  A room that looked east across north Phoenix became available, and I was moved.  The effects of the chemo dissipated.  I was monitored closely as my blood counts plummeted; when they bottomed out, I’d be infused with my previously harvested stem cells.  Mostly I was bored.  I read.  I watched crappy cable.  I spent some time perusing my favorite internet forums.  On Day 10 (post-transplant), I was given my stem cell infusion.  Really an unremarkable process.  The most interesting thing was the minor allergic reaction I had to the preservative they mixed in, which was just an itchy throat.  Makes your breath smell like creamed corn though.

10 days later, I was bounced out.  I recovered quickly, engraftment of my stem cells went very nicely, and the only complication was a failed root canal that gave me a sinus infection.  Which gave me stroke face and knot under my cheekbone and hurt like hell, but otherwise didn’t cause any serious issues.  I was required to stick around in Phoenix for a few more weeks so they could make sure I didn’t die (which I didn’t), but we came home on May 25 2013, the day before our 6th wedding anniversary.  I was relieved we didn’t spend it in a hospital room.

We did spend our anniversary cleaning gray water out of the basement from a broken sewer line, but that’s also a story for another time.

Of course, the downside is the procedure didn’t take.  I relapsed even before we’d left Phoenix.  It was a few months before I restarted treatment as my body was unable to tolerate therapy for a while.  Again, the disappoint was hard…but not as hard.  It was starting to look like this was how it would be…and I was learning to accept that.  Lacy and I made a good run of the summer, with motorcycle trips to the Clearwater National Forest and the Oregon coast, and in August I started a biologic treatment called brentuximab.

Biologics are used for all sorts of stuff: cancer, psoriasis, rheumatoid arthritis, immune dysfunctions…they’re damn near a miracle drug.  They’re actually proteins created from the DNA of animals and humans, designed to cause targeted immune responses.  Brentuximab worked pretty well…for a while.  It greatly reduced the bulk of my disease for a couple months, but when the cancer broke though, it was pissed.

In November (again), I was restaged with advancement of cancer to my liver and right lung.  Had a liver biopsy (positive).  Returned to consult my doc at the Mayo, who advised an allogeneic stem cell transplant.  This process is similar to the autologous transplant except they use a donor’s cells instead of my own.  Risks were higher, recovery longer, but it was the big gun.  I wasn’t afraid of the treatment or the risk…I just didn’t want to spend another summer in Phoenix, away from my home and friends and cats.  I didn’t want to spend weeks in a hospital room watching shit cable and eating bland food from the low-bacteria menu.  This time it was a quality-of-life question, not a fear-of-death question.  They wouldn’t even let me hook up my PlayStation in the hospital room.  That’s rough.

But I started another mop-up treatment, called GVD, in January 2014.  This regimen barely bothered me at all.  I missed very little work over the next few months.  Snuck in decent motorcycle rides.Visited my grandma in San Diego, who I had not seen in 25 years.  Then in late April, it was back to the Mayo.

The conditioning treatment this time wasn’t as hard initially.  It was the longer-term side-effects that left me suffering.  One drug covered me in an itchy rash.  Another destroyed the mucosal lining in my throat, leaving me almost completely unable to swallow solid food.  Even liquids hurt.  I spent a week wacked out on oxycodone for the pain…apparently I watched but don’t remember a lot of American Pickers.  This time I had a triple-lumen catheter stuck in my chest, which would kink and set off the IV pump if I tried to lay on my right side. My hair fell out…again.  Once more I was hating every single minute.

But again, I recovered.  I even got out a few days early, again proving I can shake off almost anything.  Sadly, I still had to spend the entire summer in Phoenix.  I was not released to come home until the end of August, after Day 100 post-transplant.  Happily, it was confirmed I had achieved remission with a negative PET-CT just days before.  Relief washed over me.  Lacy cried.  I cried.  The NP who came to tell me stood there awkwardly.  We celebrated as best we could 800 miles from home, hanging out with my wayward sister Bonnie.

After my release, the primary concerns for my health were infection and graft-versus-host disease.  I was on a whole mess of pills as prophylactic treatment for the both of them.  GVHD is tricky business…my donor immune system was an 8/10 match, which meant I was at higher risk as my bone marrow engraftment progressed.  You want a little bit…you want that foreign immune system to attack the cancer.  But you don’t want it to attack your organs, your skin, or your eyes.  I was pretty lucky: my skin got a little dry, what hair I could  grow looked like hell, my mouth was a little dry.  Otherwise, I did very well.

It was not to last.  In Janurary 2015 my PET-CT at the Mayo revealed the cancer had returned.  Not only that, it had spread to my liver again, and all through my chest and abdomen.  I had shaken off the disappointment of the previous failures, but this…this was too much.  To have those six months, to spend all that time building hope and thinking of the future for the first time in 2 years, and to see it slip away.  I broke.  My doc was honest; there weren’t many options left for me.  Palliative treatment was one, which basically would just keep me alive with the highest quality of living possible for as long as possible.  But there was also one last hope for cure: a donor lymphocyte infusion.

It’s not entirely uncommon for a stem-cell transplant to fail, especially when the donor is not a perfect match and the recipient has a particularly resilient disease.  They keep active lymphocytes from the donor’s blood for just such a situation and use these to jumpstart an immune response in the patient.  It comes with a high risk of GVHD, a life-threatening risk.  I didn’t know if I could risk my life again.  I didn’t know if I could risk what little remained of my quality of life.  Nothing had worked, and I was tired of losing.  Lacy and I returned to Idaho…I got stupid drunk on scotch with my friend Chane and she powered a bottle of wine with his wife Kacie.

It took me months to decide how to proceed.  I started GVD chemo again, which still allowed me to function more or less normally.  My doc at home urged me to go ahead with the DLI.  My doc at the Mayo did the same.  I was afraid, not of dying, but of risking what I had left for nothing.  So much time had been thrown away already.  I don’t regret it…if I hadn’t done the allograf it’s possible I wouldn’t be here typing this now.  Indecision gripped me until I was forced to chose.

I chose the DLI, got the infusion in late May 2015, and have finally found a decision to regret.  GVHD messed me up something fierce.  It took a few weeks to set in; at first I thought I was just sick.  Countless blood draws and cultures, a urinalysis and even a sputum sample turned up no sign of infection.  Then my liver function started to get wonky.  Then my eyes dried out…and my mouth.  Badly.  I could barely see, every bite of food that wasn’t liquid already required a drink to swallow.  Recognizing the symptons after all the negative tests, the NP who works with my doc at home put me on prednisone, a corticosteroid.  It didn’t help much.  A week later I went to Phoenix for a follow-up.

I had a new doctor there…my old one had resigned her position.  The new one…he’s a bit more…clinical.  I was sitting in the exam room when we walked by and saw me.  He poked his head in the door and said, “You need to be admitted to the hospital now.”

Lacy and I sat there in shock.  He walked on.  We looked at his nurse, who was in the room…she looked just as confused.  A bit later, the doc came back and reported that my liver function had spun wildly out of control.  We were not at all prepared for an extended stay, but he said if we tried to go home, I’d die.

No one had told me I was going to die at any point until that day.  That was a punch in the stomach.  I went back into the hospital that very afternoon.

I only spent 10 days there this time.  High-dose steroids, some specific chemo infusions, a few other drugs and things were under control.  We came home, and the steroids had burned the muscle off me.  I lost 30 pounds between May and August.  Not the way I’d recommend to lose weight.  I was left weak, deconditioned.  The basement stairs could now beat me like they owned me.  It took a few weeks before I was strong enough to go back to work.  I also had to wait to get off daily infusions of antifungal medication, and maybe not need blood draws three times a week.

The steroids also made me a raging lunatic.  I probably could’ve been diagnosed as bipolar at one point.  I started Zoloft as a mood stabilizer so I’d quit freaking out about breaking the yolks in over-easy eggs, or yelling at my wife about stupid shit.  It worked, thankfully. I knew I was out of control, and was relieved when my doc offered a solution.  In addition to the happy-fun-time mood swings, I became quite insulin resistant, a result of steroid-induced diabetes.  I had to go low-carb for a while, did insulin.  Really wasn’t too bad, but inconvenient.  I had to carefully gauge how badly I wanted a baked potato, or pasta, or pie, or a quart of ice cream.

I returned to the Mayo in October and a positive PET-CT showed the cancer had survived the DLI.  I wasn’t surprised.  I’d had little hope that a cure was still in my future with conventional treatments.  My doc reduced my steroid dose in hopes to get the immune response I wanted.

Well, not only did we not get the immune response, steroid withdrawal wailed on me hard.  Then my eyes started to dry out again.  I hurt everywhere.  I was exhausted.  By the end of the month, I had to leave work again.  My doc at home quickly decided this wasn’t the appropriate course of action.  She appealed to my insurance company to get me approved for a daily oral chemotherapy called Revlimid, which is not actually FDA-approved for Hodgkin’s.  She had presented my case anonymously at an oncology conference to some leaders in the field, and that was their recommendation.

And it’s working.  It’s not curative.  It’s palliative.  It buys time.  I want all the time I can get.  Let’s be honest: the truth is I’m not going to get better.

My body is worn out.  I can’t lift 50 pounds over my head without risking ending up like the “MISTAH! MISTAH!” lady from Happy Gilmore.  I can’t stand on my feet all day.  I hate to say it, but I am physically unable to perform the job I have done all my adult life.  My hands shake terribly sometimes, so badly my writing looks like a palsied old man’s.

In addition to the physical issues, I have a little of what those of us in the know call “chemo-brain.”  I have trouble remembering things sometimes, even things from before I had cancer.  I’ll forget what I’m doing or where I’m going.  In general, I don’t feel as sharp as I used to.  That’s really annoying, since I’ve spent much of my life feeling like the smartest person in the room.  Likely because I’m an egomaniacal ass, but nonetheless…

And now I’m faced with a very difficult decision: do I try to go back to my old job?  Soon they’ll be able to replace me, though my manager has put it off before….however, his hand may be forced.  Do I return to work in a different position in the company?  Can I afford a loss of pay? Can I afford to stop working and collect disability?  That’s actually a number of things to consider, all of them so important I freeze when I think about them.  I have no idea what to do next, and that makes me feel even worse than the cancer treatment.

For the last four years I’ve put down my head and trudged though all the shit.  But now I’ve hit a wall.  It’s hard to plan your future when you don’t know how much future you have.  My irrational fear of being poor drives me to return to work, but I know my body will not comply and my will may struggle beneath the stress of my position.

At this exact moment, I am lost, and that is an alien feeling indeed.

I don’t tell this story in hope of any outpouring of compassion or sympathy.  This is not a pity party.  This is to get those close to me in the know, because I have been selfish with much of this information.  I don’t need prayers or “I’m here for yous” or any mushy Hallmark bullshit.  This is the way it is.  What cannot be changed must be endured.

In the grand scheme of things, I’m okay.  I’m fine.  I’ve been feeling much better.  I have my wife and cats and sometimes even my friends talk to me (you guys really need to up the game).  Lacy has helped to hold me up all this time, and I’m so thankful to have her in my life despite the crushing guilt I feel knowing I will leave her a widow long before she should be one.

I fear I will not prevail, but I can promise I will not go quietly.

Maiden Voyage