Friday, January 27, 2012

**thunk thunk** ...uh is this thing on?

Wow.  Has it really been a year since I've written here?  For all of the drama leading up to and through radiation treatment.  This may have been the toughest year of my life.

The phrase "waiting to exhale" has been the refrain.  Despite having a vague sort of road map to recovery, I thought I would be able to pretty well chart my way through it.  The first two months went very well.  I made immediate gains in physical therapy and the feeling in  my feet came back.  I had quite a bit of pain, but I was prepared mentally to keep pushing.

By mid March I started having issues with increased pressure in my brain.  I started have temporary vision loss and pain in my ears, as I had the summer before.  This seemed to correlate with a slow taper of my hydrocortisone dosage from 50 mg per day to 30 mg.  I raised my dosage again and tried to get relief.  From here until July I struggled with these symptoms along with a return of parasthesias in my right arm and hand.  My pain was constant and I was put on fentanyl patches to cope.

After much consultation with doctors at home and at the Mayo Clinic.  We went to a longer acting steroid, dexamethesone, in an attempt to stabilize the pressure in my head.  The results were immediate and it cleared most of my symptoms.  However, I now had new symptoms due to the dex.  I had terrible insomnia and profuse sweating.  I accepted these for what they were and a neuro-ophthalmic exam showed my optic nerves had reduced some swelling.

I had a follow-up visit at Mayo on Halloween with world renown POEMS expert, Dr. Angela Dispenzieri.  We did a PET scan and the results were good.  However, I did have an unexpected rise in my VEGF levels, which are a primary indicator for POEMS disease activity.  She was very frustrated with my recovery and have no explanation for the continued pain I was experiencing in my legs.  She offered that if we didn't see improvement in 6 months she would have to reassess my diagnosis.  This left me feeling kind of adrift again.  We departed agreeing to not overreact to the blood test results and do it again in 3 months.  She insisted I should get off dexamethesone and also off of the narcotics I was on.  That would chart the next 3 months of my odyssey.

Medication changes require weeks or months do get through.  I was needing to ween off of three medications, anabolic steroids (testosterone injections), long acting corticosteroids (dexamethesone to prednisone to hydrocortisone), and opiate based narcotics (fentanyl and percosest).  My method up to now was to do med changes serially.  That would encompass the next nine months!  I decided to go cold turkey.

My holiday season was full of pain, sweat, insomnia, and FATIGUE!  I did however manage to get back to a normal replacement dose of hydrocortisone.  I think the fatigue was mostly due to waiting for my adrenal glands to wake up after several months of dexamethesone.  I can say that a couple of weeks ago I seemed to snap out of it and I think my adrenals are back to their normal underproductive selves ( I don't know yet with they will ever fully recover, but I still hold hope).

I don't have my latest test results yet, but I hope I am producing testosterone again.  I can say that the boys are back!  Three years of steroid balls was a drag.

As for the pain.  It's still with me.  The over the counter crap they give me just doesn't work.  All in all, I'm much more myself than I've been in years.  Between the ears at least.  I am mobile enough to do what I need to do.  No hiking, no mall walking.  I can do it, it's just a painful affair.

I think I have accepted more that having POEMS means living with it.  There may always be the doubt of being free of it.  It will likely mean difficulty in things most folks take for granted.  A gentleman from Canada with POEMS Syndrome died last fall.  He was 79, I believe.  A year before his death he wrote that his "old friend" POEMS was back and he felt like he was waiting for the last shoe to drop.  Sad as it may seem, I found this comforting as he still led a long life.  For most, life is full of some pain, and there is beauty in every sunrise.  Sounds pretty normal to me.

Tuesday, February 15, 2011

There's Always You

Life can chip away at us for a thousand years
Castaway our happiness upon a sea of tears
But I can stand forever here, so long as you are near
In our embrace, a wall of stone for any wave of fear

There’s always you to hold me
When it seems like hope is gone
There’s always you to hold me
With the strength to carry on
There’s always you…

Ever is my will to say you are everything to me
Never is a doubt that you are always there for me
You kindle every shadow cast upon reality
You light my darkest moments with every possibility

There’s always you to hold me
When it seems like hope is gone
There’s always you to hold me
With the strength to carry on
There’s always you…

Wednesday, February 2, 2011

Every Grain of Sand

Let go?

Marking the sense of loss, each grain of abrasive from a handful sand
I am left to take stock, what is left in my possession
Greater is its detail under the loop
Crystalline beauty found in every goblet
In it the power to scour saddened layers exposing the heartwood
Warm in its memory of summer, measuring the tides
Vanguard to an ever shifting continent
For now, in my own insignificance
Still holding this from the pull of the earth

Three Word Wednesday offered these: Abrasive, Handful, Loss

Photo courtesy of Hayams @ flikr

Tuesday, January 11, 2011

Pushing Through - Segue to Reborn

Time I break the silence on the blog.  So much has happened since last September, I could write an entire book.  The problem has been every time I've stopped to write something, I couldn't focus on any one part in reflection to jot the first word.  Health.  It's been all about that. 

After being admitted to the hospital in September I was given several serious and rare diagnoses to go with the Addison's disease I've been living with for several years.  The trouble was none of my specialists could correlate any of them.  Worse yet, they didn't seem to care to try.  My wife had made an appointment at the Mayo Clinic in Rochester, MN back in August.  Before I ended up in the emergency room, just out of frustration with my worsening condition and lack of interest from my attending physician's.  We had to go.

I book-ended November with a couple of week long trips to the Mayo Clinic.  The first week I got around on my own fairly well, save for some leg fatigue getting through the airport in Detroit.  The last week, Beth was pushing me around in a wheelchair.  The reason being peripheral neuropathy from POEMS Syndrome.  That is my diagnosis.  A single diagnosis that explained everything I've been misdiagnosed for previously.  Including, Addison's disease.  My POEMS Syndrome was being caused by a single plasmacytoma on my left femur.  A malignant lesion the size of my thumbnail that appeared unexpectedly on a PET scan.  I needed to undergo six weeks of radiation therapy in order to kill the source of the disease and hope my rapidly worsening condition would stabilize.

As an aside, the song that is playing, "Segue to Reborn" I recorded just prior to my second trip to Mayo.  I played the drums as best I could and barely got through the 2 minutes before the legs quit me.  The title invoked my state of mind.  I was ready to nail this diagnosis and start my treatment and recovery.

At this time, I have seven more radiation treatments left and I finally feel as though things have stabilized.  I've got a long road to recovery and don't yet know what permanent damage I will be left with.  But, I do know I am very fortunate to have caught this as early as I did.  As it turns, the Mayo Clinic is the premier research and treatment center for POEMS Syndrome.  A poetic fate indeed.  My wife is my guardian angel, and my gratitude is not even fully realized.

I am just now shaking the dust from my lowest point.  Which can only mean one thing.  Things are definitely looking up!  I can honestly say, I am looking forward to the new year.  With that, I wish a Happy and Healthy New Year to all of you!  God Bless.

Wednesday, October 20, 2010


IC434 and the Horsehead Nebula

The naked shimmer of starlight for eons unnoticed by Earthly inhabitants
Full of answers to history and origin waiting only for one to stand and say, I
For self awareness begs the question, I am here but why?
The naked eye cannot see the stars for the Garden
And so from the Garden we did come, and wrote it so inside The Book
'til some other I would question how, decide to take a closer look

The heavens swirled around us so, we the only thing we know
The centre of the universe, holding everything in tow
But what if that be not quite right, about the ever starry night?
The earth a slave to holy sun, the sun a star inverting night?
A speck upon a galaxy, floating on an immense sea
Life be more than you and I, the effect of possibility

This fantastic photo of the Horse Head Nebula courtesy of Terry Hancock at flikr

Three Word Wednesday offered these:  Effect, Immense, Shimmer

Friday, August 13, 2010

Like Dream Paralysis


The dream within a dream
Days within the weeks or so it seems
We sleep with our eyes open, walking
Leverage arms unto the air, more like water
Smiling at peers, we dirge waltz through snow drifts
Piling to our knees as they pirouette through sunlit pastures
Slow are the moments as time passes furiously around us
Who's charade is this?  O Lord, is this a joke or a test of my will?
The apothecary passes this for remedy, but it only staves the inevitable
Life, still sweet to savor, no longer here to gorge and quench, 
But to sip and peck 

 Three Word Wednesday offered these:  Joke, Leverage, Remedy

Photo courtesy of Bryan Brinkman Photography, find him at flikr

Friday, August 6, 2010

One Minute of Joy

You have 1 minute to hear what's new once the auto-player commences.  So pay attention!

"When the Music's Over", that is the title of this blog.  Which I began as a means of kick starting my creative writing.  Of course, there is much implied in the title.  This is quoting the great Jim Morrison's lyric, "...when the music's over, turn out the lights".  As in, when I can no longer make music, just shoot me.

There are certain challenges as an amateur.  The biggest being time.  I have a real job.  That is, one that takes up most of my time.  That was okay prior to having children, I had plenty of time to play in bands, rehearsals, gigs, write songs, or just sit on a porch stoop plucking away.  Being a proper father takes time.  So I stopped playing in bands for the most part, and took to recording in my basement in the evenings into the wee hours.

The other challenge is energy.  Creativity only comes from inspiration.  There's nothing inspiring about needing a nap.  Living with Addison's disease has really limited my energy.  Far more than I was expecting, as the doctors pretty much said, "take the steroids and you'll live a 'normal' life".  Bullshit!  It's a roller coaster.  A really slow roller coaster!  Pretty much, feel good for a few weeks then crap for a month or two.  So far anyway.  I'm still hopeful I can take full control of medicating my own symptoms.  Waiting for a doctor to push the right buttons is purgatory!  "Try this and see me in four months".  And when it doesn't work (it usually doesn't)  you've pissed away a whole season hoping these twits can get it right!

Enough bitching about my poker hand.  The bottom line is writing takes a lot less energy than producing recordings.  So I started this blog as a creative outlet.  It went swimmingly for a while, but the last six months I can't seem to get the first word out!  So now, I write.  I don't know how creative it is, but at least it's something.

I decided to take some time off this summer, and I started my vacation in the studio.  "One Minute of Joy" was the result.  I'm a musical doodler of sorts.  I can pick up all sorts of things and make some sort of rhythm or melody out of it.  What's new in this recording are a couple of things.  First, I have an old Melobar lap steel that I needed to convert from 10 strings to 6 strings, which I did.  You can hear it during the opening melody.  The second is, me playing a live drum kit.  It's nothing to write home about, but it keeps the bed made.

I figured this was just a segue to a couple weeks of musical productivity.  Trouble was, the month long heat wave in New Jersey really knocked me on my ass.  I've determined that I will never live in Texas again!  I used to gig in 105 degree heat, outdoors!  I would literally need an IV hooked up to me onstage these days to do that!  Maybe I'll move to Canada?

That's the news from Lake Woebegone.  I'll try to write sooner next time!

Wednesday, May 19, 2010

Slow Black Death

How many more reasons do we need?
To wean ourselves from the acrid black tit of fossil fuel
The news of every dawn be full of dread
This festering shadow continue to spread
A mile of ocean down we drill
To feed our gluttonous appetite
Be it driving a tank for a quart of milk
Or filling the corporate pig trough

Can anyone grasp the depths of this sin?
Our leaders developed this energy "policy"
Behind closed doors and in harmony with the oil barrons
They send our sons and daughters to die in foreign lands
So these pigs can continue to profit from black heroin
They rape our planet so our children can live in a world 
Without beaches and birds, never having reason
To cast a net into the sea

How many more miners must die in the name of "clean" coal?
How many mountain tops leveled before we learn the value of a vista?
And yet they pacify the lobbyists and spurn the people
How many of us would choose a better way if given a choice?

Three Word Wednesday offered these:  Dead, Grasp, Pacify

Photo courtesy of waymjoh at Photobucket 

Friday, April 2, 2010

Good Friday

For 30 odd silver pieces had,
Judas gave Pilate, Jesus’ head
By Roman order he would be led
Upon a crucifix ‘til dead
A spray of thorns, his head adorns
Are sharper than a demons horns
The cross upon his back was worn
‘Neath sweat and blood his skin was torn
The road to Calvary was full
To view this gruesome spectacle
The Lamb of God would die for all
Upon Golgotha, Place of Skull

Notes:  A repost of "Good Friday".  Photo courtesy of Christopher Chan at flikr

Friday, March 26, 2010

A Sort of Letter

Three months of nothing to say.  From a creative standpoint at least.  The new year was full of hope and dedication.  Refocused on taking control of my well being, I spent much energy researching and implementing changes in my medical treatment.  

January began with the euphoria of feeling normal.  What could be so narcotic about normalcy?  After 3 years of feeling like crap you forget what it's like to go days on end not confronting roadblocks.  So my year began without the solitary peace of creative writing.  But with socializing and playing and performing music.  Those are two things that have been a staple of my adult life and were sorely missed.  And so I was beginning to think and plan on getting out and performing again.

By January's end, I was back on the rollercoaster.  Perhaps overconfident in my condition, I engaged and overindulged, in some late night revelry with neighbors.  This hangover should have had me on an IV in an ER.  But in my own shame and embarrassment I rode it out.  I haven't been the same since.

Febuary's blizzards and shut in darkness tends to meloncholy.  Add in the anvil of fatigue from Addisonian imbalance and you have an iceberg on the senses.  A common rhinovirus is to be expected this time of year.  But this manifested into some unexplained maelstrom that put me in the hospital for a full day of fruitless examinations. "All the tests came back normal, Mr. Orzek.  But we've determined you have a viral syndrome".  A what?

The weeks after, it became evident that the meds prior to "viral syndrome" weren't cutting it.  So it's been lower the meds, get sick for a few days, stress dose, lower the meds, get sick for a few days, stress dose ...etc., ad nauseum. Lots of nauseum.  It seems my adrenal glands have been beaten further into submission.  This progression is to be expected.  But there is no road map to getting there.

On March 9, I received a phone call that my father-in-law, Glenn MacKinnon, had died.  He and I were close.  As my own father has been dead 15 years now, Glenn has been my guiding role model through fatherhood and marriage.  I don't think I've realized his loss for me yet.  My wife has lost a father, my children their only grandfather.  My family's grief is obvious.  And overwhelming.  

But having his once or twice a year outreach will be noticed.  His hand on my shoulder, asking "so, how are YOU doing?"  That honest and open invitation to share my internal paternal frustrations or fears won't be there any more.  That is when it will hit me, I think.

Time marches on and life is for the living.  Enter any other cliches such as, get back on yer horse, that which doesn't kill us makes us stronger.  It's all true, however hollow it feels right now.

But I am still determined.  I will get myself right and enter this spring hopeful.  And carry forth with my loved ones into the warmth of our summers.

Wednesday, December 30, 2009

The Path of Least Resistance, Part I

Through post-adolescent fear, we marched forward as involuntary draftees in collegiate armies full of promise and uncertainty.
Four years of hard labor, sex, drugs, and alcohol sweating through our consciences, peptic ulcer anxieties.
Torn between duty and pheremonic ecstasies we burned the midnight oil and partied 'til grey twilight of the dawn.
Bobbing for forbidden apples, peer pressure holding our hazed faces below the surface until the point of erotic asphyxia.
Semi-conscious realization in the glow of bare basement incandescent lights six feet under beer stained floorboards.
The hideous scent of vomit, piss, and beer drumming out the beauty of innocence lost in the maddening pace of competitive debauchery.
Neither the greatest generation, nor me generation, not baby boom, no gen x, gen y. Generation Nothing.
Greatest wonders were we who got up in the morning and continued to ambush our cache of talent and brain cells, day in day out.
Holding the rudder to the wind for the course of double-vision compasses maintaining headings true.
We meddled with duty and destiny carrying onward in mediocrity to the finish line still proud in the face of spite.
Shadows of the Great Depression looming over us like specters in the night spearing voices of shame into our psyches.
We dodged anti-establishment banter, flower power warriors hurling martyred ideology down our throats so we may taste the shame.
Thrusting rock'n'roll into our ears like fingers we chanted loudly over dark reason hoping for a brighter way.
My generation of fence walkers, teetering above the jaws of yesteryears never knowing which way the wind blows.
So pour another drink of c'est la vie, forget the moral battles, grab the token laureate and join the corporate ranks....

Three Word Wednesday offered these: Ambush, Hideous, Meddle

Wednesday, December 9, 2009

The Grave Robber

Grave Robber (1 of 3)

Though lean and lithe and sinewy
He toils earth and stone with ease
Slipping through the dark of night
To feed his begger's appetite
His occupation would some offend
Disturbing any human's end
Divining with his crooked spade
Sniffing gentry freshly laid
Tripping lilies in the gloom
He raids the poshly relished tomb
From the grave rise auntie's pearls
Or the pocket watch of master Earl
What value can a dead man claim?
When ash to ash be one and same?
The labor done whence dawn has come
Another honest workday done

Three Word Wednesday offered these: Grave, Lithe, Offend


Image and artwork courtesy of J.M.J. Wikholm. Visit him at flikr