no news is…no news…

<sigh>

Well, the two week waiting period came and went.  DH and I waiting patiently for an update from the medical professionals about what the next steps were.

He’s had bloodwork done weekly and the liver enzymes have reduced to being just slightly above normal levels.  Normal enough for them to safely operate on DH without him dying on the table, just by putting him out.  Ummm…woo hoo?

So when the two week waiting period went by without a call from the doctor, I waited until the next day and left a firm, but respectful message asking in essence:  WHAT THE HELL ARE THEY PLANNING TO DO?!?

The surgeon returned my call and informed me that they had indeed case conferenced DH on July 20th when they realized that any conversation by a group of seven doctors and two nurse practitioners regarding a possibly cancerous tumour would benefit from the medical images and biopsy results and that they should have probably requested and reviewed them prior to the case conference.

FACEPALM ONE!

Needless to say I was a little less than impressed and offered to fax/email the copies of both results and the CD-ROM of the medical images to them.  But they had apparently already requested it.  He assured me that DH was priority one for their case conference on Friday the 27th and that they would definitely contact me “by the end of the day.”

At 3:30 they had neither contacted DH or myself so I left another polite, respectful but firm message asking, in essence:  WHAT THE FUCK?!?

The nurse practitioner who has been handling DH’s care since he was discharged from the transplant surgery called to confirm that they case conferenced his file and the surgeon who did his transplant took one look at the pathology report, saw the name of the pathologist who did the assessment and flat out refused to accept the report, demanding his own pathologist get the samples and redo the pathology.

FACEPALM TWO!

While this is a doctor I trust implicitly with DH‘s life, I question the need for this.  Assuming the tests will be handled the same, the results should be identical, yes?  However if there is that much deviation in the quality of pathologists in the Toronto medical community, why is the other one allowed to work if their results are so questionable.

So once again, it’s hurry up and wait with this big dark cloud looming over our lives casting a huge shadow of bleak uncertainty.  We were told that we may know “as early as Tuesday or Wednesday” but we know how well we should hold them to their words.  I expect to be placing a few phone calls on Wednesday afternoon…

No news is…no news?!?

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in which myke realizes he’s growing old…

On Thursday, I attended a local coffee house’s LGBTQ-friendly open mic at the invitation of the gentleman organizing the start up of the Hamilton Gay Men’s Chorus (HGMC).  DH and I went to support the two members who agreed to sing at the open mic and also to have a sociable evening out too!

Needless to say sociable evenings out are rare for us these days and the distractions are greatly appreciated.  However this one evening definitely highlighted something to me:

DAMN I AM OLD!

Most of the other participants at this evening were definitely much younger than the members of the HGMC.  When I first walked in, I thought “okay, these younguns are looking for older members of the community for support and guidance.”

Nope, they’re good! 

Maybe they’re looking for a historical perspective from folks who grew up in an era where being gay was considered a mental illness to be treated, not to mention an evil that was to be ignored or ostracized.  Or an era where folks would regularly mourn the loss of friends due to illness, disease, or being beaten to death.

Nope, that was then, this is now.

But this won’t be a diatribe about the young whippersnappers.  It’s not that they don’t want our perspectives, it’s just that they need the context in which to place our perspectives in – as queer identified youth, they are too busy coming to terms with their feelings and emotions and growing up queer in a society, which may seem to be trying to understand them, still has a long way to go.

When they want to ask about our experiences, we should be open and ready.  Until then, DAMN, I’M GETTING OLD!

This morning’s revelations:

  1. I got excited when I began to notice the scrubbing bubbles automatic soap scum remover is doing a fantastic job at keeping my shower clean and shiny.
  2. I got incredibly excited when I discovered the ear and nose hair trimmer I recently purchased was “rinsable”.  I don’t know what makes me feel older; the fact I NEED an ear and nose hair trimmer or the fact that I got excited it was rinsable.

DAMN I’M GETTING OLD!

I still refuse to grow up though!

on selling out and endorsement

An earlier posting about monetizing my time and efforts as a social media kinda guy, garnered a lot of responses from fellow social media types.  Particularly when dealing with events that I am being asked to attend that I truly was not planning on attending for various reasons (lack of interest, cost, etc.)

In the long run, I have decided to draw the line in the sand.  I’m sure some people will take offense to this but all I have throughout the various social media outlets are the following:

  • My opinions and voice
  • My integrity

One I will always have, as I am not afraid to voice my opinions, sometimes to my detriment (a less than stellar review of local restaurant led to my being banned from that restaurant and another fine establishment run by the same couple).  But I am not willing to sacrifice what little integrity I have in exchange for money or product.  To this end:

If I am attending an event, if I happen upon something that tickles me or that I feel is of interest to my followers on Twitter or my blog, I will pass on said information.  I will not promote events that I was not planning on attending, nor will I promote a product that I would not personally buy using my own money.  Everything I pass on or endorse is a reflection of me and my feelings, if I cannot support a product or idea, I won’t be passing it on.

In the past, I have written product reviews for print magazines and in every instance, the review is sent back to the company to comment and correct prior to their being printed (for obvious legal reasons).  On a couple of occasions, the companies I reviewed were so happy with my reviews that they allowed me to keep the product.  I was honoured by this, however the review process felt “tainted” in that it seemed they were buying my endorsement with free stuff.  I usually passed these items on or returned them regardless.

As a musician I’ve had the opportunity to have product endorsements, where I would use one or more companies’ products exclusively in exchange for a discount, product and tour support or other considerations.   In my experience, this could be a good thing and it can backfire on you as well.

Case Study One:  I was a huge fan of one particular company’s basses as several of my musical heroes (including a Beatle) played a particular instrument.  This company’s instruments are particularly hard to find as they are a low production manufacturer and pride themselves on their exclusivity and craftsmanship.  I ordered a bass from them from a local music store and, while the tone was what I desired, I had problems with certain aspects of the craftsmanship of the bass. 

Knowing the store I ordered it from would not have another instrument in stock, I contacted the company directly, sent them a copy of my CD and they immediately had me send back the instrument.  They sent me two instruments in return for use with my band, which I used, despite problems with one of the two instruments.  The main problem with the one bass was that a certain note on the neck was constantly fretting sharp and sounded out of tune.

I thought it was a simple intonation and setup issue, so I performed a quick setup on the bass and found that the problem was highlighted.  I had my repair tech look at the bass and tried a setup and once again, that note was fretting sharp.

We then tried changing the strings to a different brand, thinking it was a flaw with the strings manufacturers and things remained sharp on that note.  When we finally took the bass apart and measured things, it was discovered that one fret of the instrument was actually misplaced, causing all notes to play sharp on that fret, it’s just the one note on the particular string was more noticeable than others.  When I sent the bass back to the manufacturer as fixing the placement of the fret would have involved extensive finish work, they informed me that by changing the strings to a different manufacturer’s nullified their warranty and told me they’d send me back the bass if I didn’t want to pay for the refinishing work to be done.  Apparently I had to use their strings as an endorsing artist and changing them in the effort to compensate for their poor craftsmanship, voided my warranty and had me labelled as a “difficult” artist.

The cost of this refinishing work would have added up to 75% if the cost of a new instrument, so I suggested they could keep the bass and I’d use the other.  They informed me that the instrument in question was “my” bass and the other instrument was the “endorsement bass” and asked for it back, still sending me the bass with the incorrect fret on it so they wouldn’t have to refinish it.  This was the second instrument I had received from them with quality control issues and I was sorely disappointed, noting the high cost of their instruments.  I could not support and put my name towards a company that could not put out consistent and quality product…

Long story short, I sent back both basses, thanking the company for their consideration but obviously we could not work together.  I further contacted the store for a refund of my funds noting I had return receipts for both basses.  The store would not refund my money and there was a little back and forth with the company and they refunded the wholesale portion of the cost of the instrument.  I was not impressed and still out a portion of the money, but I could not fault the store as they are simply the distributor – however I do vote with my wallet and choose to spend my money elsewhere to this day. 

Case Study Two:  A company known for producing custom guitars to order and also manufactures amplifiers and public address systems.  I was looking for a portable PA system for festival and house concert use and found this company.  As they specifically do mail order, I contacted them, explaining who I was and what I was looking for, sent them a press kit and demo package and paid for a PA system. 

After the bad experience I had with the prior manufacturer, I was not looking for any freebies or other consideration, however they were willing to help me out as a solo artist and provide support on the road.  I ended up with a discount on the PA system and an acoustic guitar at the artist’s discount rate, as well as supplies of strings and picks to last me a tour or two.

I loved the PA system (and still use it to this day), however found the guitar to not be to my liking and offered to send it back after the tour.  They thanked me for the offer and told me to keep it, asking me for leftover strings and picks that were still in their sealed packages (which I didn’t send back but paid them for).  I still order (and pay for) speakers, cables and other supplies from them, not as an artist but as a customer and some of the old guys still send me swag every now and again, even though I’m no longer an endorser.  To this day, when asked for ideas about purchasing a PA system, I recommend them heartily for their quality, consistency and customer service.

I’ve been lucky to have musician friends whom have hooked me up with companies that they endorse for one time assistance with shows, tours, etc.  I’m willing to try these items out and am thankful that these companies have given me the chance to “try before I buy” and test stuff out in the real world.  If I like their product, I will happily pay for it, if I don’t like (or cannot use it), I will thank them politely and return it with my comments. 

I have a lovely acoustic guitar from a wonderful company, who loaned me an instrument on the recommendation of a friend (thanks MK!) for a tour where I was doing a fair amount of live looping.  I was so happy with this guitar that I purchased it (at full price) and it has replaced my 20 year old workhorse for live gigs – it’s simply one of the best acoustic guitars with a pickup for live use that I have played.  Does it touch my main guitar tonally or playing wise?  Not in the least, but it fulfills a need.  Will I endorse either company?  Not officially, but I’ll let folks know that they are my recommendations for quality guitars by companies who care about their customers.  And I’ll say that for free!

So to event organizers:  if you want me to attend your event and tweet or blog about it – “sell” your event to me – make me excited and want to go!  Make it affordable so I can indeed go!  Make the events and proceedings worthy of being talked about!  I will be more than happy to tweet and blog about the goings on, if I find that there is something that my readers and followers will find of interest or use.  If I’m not interested in attending, I simply won’t go, even if you offer me compensation – life’s too short and busy to spend cycles, worrying about things that I can’t see having impact on my future these days.

To products and manufacturers who have offered me stuff in exchange for a few kind words or consideration.  If I would normally consider purchasing this product, I will happily accept what you offer me, however will inform folks that I have received this product or service gratis.  If I can provide a positive endorsement, expect one publically – but  – it will be a “warts and all” assessment.  If I can provide constructive criticism, expect it privately along with the returned product.

If I normally would not consider purchasing this product, expect a “thanks but no thanks” response from me along with the returned product.  Don’t get me wrong, I am truly honoured when people and companies offer me stuff, really I am (and am damn lucky). 

But all I have in this brave new world is me and my reputation!  And there is no such thing as a free ride in this day and age and no ride is worth the price of my soul!

no news is good news? and an open request to folks of faith.

So after the incredible excitement and emotional roller coaster of the past two weeks, DH and I have settled into an uneasy peace of sorts in life.  We are awaiting the final word from the hospital on their plan of attack for his future treatment and prognosis.  Needless to say, it has been a period of quiet, brooding stress.

At this point the options floated are:

  • Interventional radiology treatment (ablation treatment (electrode into the tumour to kill it – DH had several of those prior to the transplant), radiation therapy, ultrasound guided chemotherapy (DH had one treatment prior to the transplant, which was a resounding failure and left him with symptoms similar to alcohol poisoning for days)
  • Surgery to remove the tumour and explore if it is spreading or discrete (serious and expected to be a long and traumatic for DH surgery with prolonged recovery).
  • Chemotherapy.

The doctors have convened a tumour board to case conference and determine the best course of treatment.  They have given us a confirmed date of what they plan “within two weeks” from DH’s discharge from the hospital, so we are well on the way to the end of week one.

However both of us just want closure, one way or the other.   I believe that not knowing anything can be worse than the knowledge – we’d at least have something to prepare ourselves for.

Until then, we appreciate the support and prayers of folks.  The support of my family, friends and co-workers has been incredible, especially when “the powers that be” at work have been less than helpful for me.  It’s always appreciated to have someone rooting for us!

However to the folks who are casually acquainted with DH and I, I just want to give a gentle reminder that both DH and I have had histories with organized faiths with mixed and (usually) disappointing results.  We have our own beliefs and ways of coping with this stress and have reached out to people whom we know, respect and love about our spiritual and emotional needs.  We have done so as individuals and as a couple.   So, please understand I mean this out of utmost respect when I say, NOW IS NOT THE TIME TO TRY TO CONVERT EITHER ONE OF US TO YOUR FAITH!  We’ll be respectful of your beliefs the moment you are respectful of ours. Using this moment of perceived crisis is just plain tactless and may result in your being pruned from our lives – just saying.

Being truly supportive of people is being supportive of who they are, including their personal beliefs.

sometimes lyfe is like an indie film…

I went into Toronto to visit DH last night after work and had a very cool “Toronto” kind of moment.

As I am powering upstream up Bay St. at 4:30pm (going rather decidedly against the flow  of traffic), I decided to make direct eye contact with as many people as I could to see if a human connection could be made in the vast sea of humanity during the hustle and bustle of rush hour.

At Bay and Richmond, I locked eyes with a rather large and whimsically dressed young woman (she looked like Kirsten “Penelope” Vangsness from “Criminal Minds”) who obviously had itgoing on.  The clothes, the hair, the glasses, the look, the confident way she carried herself.  We headed straight for one another, never dropping eye contact and not moving out of one another’s way.  As we got close, she smiled a wry sort of smirk, as did I. 

I took a half step to the right, just before we collided, as did she.  As we passed, she raised her left hand and we high-fived each other.  Just a very cool one-of-a-kind moment where kindred spirits connected and bonded, even for just one fleeting moment.

I will be looking for her again, the next time I am walking upsteam on Bay St.

Superstar!

Now is the time when the excrement makes contact with the ventilation

Leonard Cohen said the above phrase when he performed at the then O’Keefe Centre in Toronto on his “The Future” tour, which marked the revitalization of his musical career.

The past week has been a good reminder of this phrase for me.  The shit has hit the fan indeed.

DHis still in the hospital, recovering from his liver issues all the while they are doing the pre-operative assessments and testing as well.  Once he is released, he can recover at home until the surgery date.

What is increasingly clear to me during all of this is that times like these spotlight the differences between true friends, family and mere acquaintances.  When the shit hits the fan, is when the rubber hits the road and you determine whose words actually resort into actions.

Now as a Myers-Briggs INTJ, I usually try to maintain a level of protection around myself and pride myself in independence.  My closest friends and family know that when I do need help, I will reach out accordingly and ask.  As my asking for help tends to be a rare occasion, they tend to gladly help out with little question and I thank and love them dearly for it.

For that, DB, DM2, ME, Lady Ellen, Bekah and the Cabot-Armstrongs get my eternal gratitude.  There have also been the various other folks (I’m looking at you Messrs. Wamsley, Morton, Scutella, Kuruc and Kuplens-Ewart) who don’t know me so well but have performed random acts of kindness and distraction that have helped stem me from the road of self-immolation.  These folks receive my gratitude as well!

It’s the folks who say “if you need anything, just ask” and don’t follow through with that promise when I do ask that continue to disappoint me.  I won’t name names here, but I will say a lot of people (particularly some folks who consider themselves to be, and openly promote themselves as, “good Christians”) have truly disappointed me and this will be remembered accordingly.  It seems that when it comes time to put one’s time and energy where one’s mouth is…

Anyhow, I won’t bitch any further.  Just saying, if you aren’t going to back up your words with action, please don’t open your mouth…mmmkay?

Also folks, thank you for the words of support, but if I hear:

“You have to be strong for DH,” one more time, I will either scream or throttle the person who imparts this little shard of wisdom.  I know this, but ask them who will be strong for me?

Anyways, distractions have been good for me.  I am writing music furiously, reading voraciously and exercising like a man possessed.  I have returned to a normal work schedule, working five days a week regular hours so I can focus on having time at the end of the day to break chores up into little pieces instead of rushing around at the end of the day and cramming a whole lot of activity into Wednesdays…I am doing this to take better care of me, so I can be strong for DH <GRIN>

Over and out folks!  Be good to one another, because life can truly be a motherfucker sometimes.

ain’t life a motherf*cker

F. Murray Abraham said this line in the 1989 Tom Selleck movie “An Innocent Man.” And it pretty much sums up life today.

Let’s get this over and done with: DH has been diagnosed with pancreatic cancer.

Around 5 years ago, he was diagnosed with liver cancer resulting from the hepatitis he contracted due to an injury he was treated for while working as a chef. They treated the cancer interventionally by burning the tumours out as they formed, but his condition was worsening on an increasing basis. He was given 2-5 good years and put on the transplant list. At 8:30pm November 29, 2009, we got the call to go in and the longest night of my life began.

Well DH was resting in a hospital bed, peacefully sedated, I paced in the visitor’s lounge, watching late night and early morning television while waited for determination if the donor organ was healthy enough to transplant into DH. Luckily it was and he went into the operating room early the next morning and I went home to pass out and wait for the phone call from the hospital.

DH recovered, with a major setback on December 7, 2009 when I got called in and informed they were going to read his last rites as he had contracted an infection and his body was shutting down. I was given INCREDIBLE amounts of support through the chaplaincy office, social worker and psychologist, not to mention my friends and family.

DH pulled through and eventually recovered, coming home in time for Christmas and we never looked back.

Until 3 weeks ago, when he began noticing that his skin was getting itchy. We initially thought it was an allergic reaction to something in the atmosphere or the sun. When the itching got worse to the point that Benadryl wasn’t touching it, he sought medical attention and they ran blood work.

Red flags were raised when his liver enzymes were up. Our family doctor faxed the results to the transplant clinic and they brought him in on an emergency basis to run their battery of tests. An ultrasound and blood work later and he was scheduled to have a stent installed in the bile duct. He was sent home as this can be done as an outpatient procedure and I was given a list of symptoms to watch for.

Later that night, we rushed him to the local hospital’s ER. They ran their tests and contacted the transplant program and the doctors at the ER were given instructions to make DH comfortable and I was told to wait by the phone the next day. The second call came and we rushed into Toronto to the hospital the next morning.

DH was admitted and began treatment to make him comfortable while he waited for the procedure. When they did the procedure on Tuesday this week, they noted that the bile duct was not blocked, but constricted from the outside. They immediately did a biopsy and ordered an MRI of his abdomen.

The tests came back this morning: it was our old enemy cancer.

The surgeon thinks the tumour can be removed through surgery, but they won’t know until they’ve opened him. However his liver is currently compromised to the point that any operation at this point would kill him. Once his liver has had a couple of weeks to recover, they will have one of the transplant surgeons operate on him. Once they’ve had a chance to get the lay of the land, they will determine what will follow.

Needless to say, this news went over about as well as a hoof to the crotch, especially seeing DH is to sign a contract with the Toronto Eaton Center to be their Santa this upcoming holiday season and the recent good news I’ve had in my life.

The surgeon commented that life is incredibly unfair sometimes. No shit.

Dear cancer,

DH and I have been doing well without you in our lives for the past three years and now you’re back as an unwanted guest. Please leave us and don’t take any more of my husband and life mate from me, you’ve stolen enough from both of our lives already.

Regards, Myke.

Ain’t life a motherfucker indeed.