My Cancer, My Chemo...Not Complaining, Just Saying

Bear with me, this is new for me.  I'm going to try and write about the negative side-effects of chemo, while experiencing them, and while at the same time conveying my overwhelmingly positive attitude on what is mostly a good day.  In other words, I'm going to try and tackle a delicate subject in a sensitive and thoughtful manner, while at the same time trying to stay focused and not distracted by said negative side-effects.  This blog post is a month to two overdue but that was the first to go with the first infusion of chemo - my ability to concentrate.

Clinging To...
I've made some pretty strong statements about false hope, flim-flam, alternative medicines...anything that sucks the money out of the wallets of the vulnerable, that dangles the unbelievable in front of the susceptible, against wasted optimism.  (Some would argue optimism is never wasted, I disagree but will concede that if not wasted, it is sometimes misplaced.)

A couple of weeks ago in the worst period post-chemo yet, I did a little clinging myself.  In my post chemo recovery I experience a nagging and persistent baseline nausea.  Look, even in my darkest misery thus far, I am keenly aware that others, most others, are suffering chemo effects far worse than I.  Even a couple of trips to Urgent Care in the last couple of months, once by ambulance, have only served to remind me that there are others, many others, in far worse condition.

And yet this ongoing, never ceasing nausea can occasionally get away from me, and on this occasion it led to a closer familiarisation with the family commode, one that I had desperately wanted to avoid.  I have a good friend who refers to that as the "childhood fear of vomiting."  Yup, not gonna deny it.

As I experienced the worst of it, and my spirit took a temporary leave of my wretched body to confer with my psyche, I began to wonder what was the point of all this?  Why put myself through such misery for a fatal disease that will not be cured by treatment?  The chemo is only to control the symptoms.

And it occurred to me that even a false hope, a faint chance of a cure if I believed, might be enough to make the next 90 seconds, if not bearable, then less insufferable.   And the next 90 seconds after that, and the next several minutes after that.  I understood. I needed something on which to focus; on which to cling.  I understood those who desperately embrace that which, given different circumstances, they might reject or at least retain some sense of caution. 

And while I don't begrudge those who take that route as a means, these are the short bursts of helplessness and discomfort and yes, pain that I knew were ahead of me when the verdict was rendered.  What was that line from Poltergeist?  "they're here...."

I don't know what the answer is.  When the pain grows more frequent or perhaps less manageable, what will be my focus point?  I just have to get through this so....  I have to hang on so that....so we can...  So what?  I don't know.  But I do know this.

I do not travel this path alone.

Good Vibrations Gone Bad

My thanks to the many people who have, completely unsolicited, shared endless anecdotes of lives saved and odds beaten by the use of alternative medicines and practices. Most of these are unproven, some disproven, but hey...don't let that stop you. If I were to stroll the hallways at work professing my faith as shamelessly as these folks shill false hope I am quite sure our HR folks would have some thoughts to share on the matter.  "Cease and desist" comes to mind.  

Just to be clear, my family doesn't deal in false hopes. I have seen enough of it in my ministry of palliative care that I wouldn't wish its destructive power on anyone.  It has no place amongst people of faith. It has no place in this house.

There's always a heaping helping of pseudo-spirituality to accompany the good vibrations and seaweed shakes.  For all these well-meaning but misguided folks, and especially who claim to be marshalling the forces of the macrocosm on my behalf, I hate to drop names but...

My Father is kind of in charge of the universe. 

My Cancer Doesn't Suck

A little while ago I posted a YouTube video on why I don't think my cancer "sucks".  That seems to be the going sentiment in my group of social media friends, that Cancer Sucks!, and it has always bothered me.  Until it became personal I couldn't really express how I felt, certainly not in a way that might not have been considered disrespectful of other's feelings.  I hadn't walked in their shoes, and still haven't; each individual's experience is different.

My short video doesn't really do justice to how I feel.  Here's what I mean to say.

• To say that something "sucks" diminishes it.  The phrase is best applied to little stuff that doesn't really make a difference in the big picture.  Like missing out on low gas prices because you procrastinated on filling up.  That sucks, and it's small stuff.  A diagnosis of cancer IS the big picture, particularly if one, like me, learns that there is no cure in the foreseeable future, and further, with mesothelioma there is no foreseeable future.  It is a fast moving, nasty disease.

• I think it's too easy to copy and paste a "Cancer Sucks" meme, so it's the lack of effort that not only bothers me, but again, the failure to even scratch the surface of how the disease affects families, friends and co-workers.

• It's hard to be continually told that my "cancer sucks" from well-meaning friends.  It's not very encouraging or uplifting, and it's not at all how I feel.  Perhaps a way around it for someone reaching out for the first time, unsure and bit nervous, is to ask.  "How do you feel?" or even "How do you feel about all of this?"  I am very appreciative that almost every friend has asked the follow-up question, "how are the kids doing with all this?"  Warms my heart.

• And finally, for any of us in this home to say "cancer sucks" is like giving in to self-pity and woe.  In this house we openly discuss this disease and all (and I do mean ALL) of its ramifications.  But it doesn't define us and it's not the only thing we talk about.  For example, we all seem to agree that the 2013/2014 Leafs SUCKED!

My cancer doesn't suck and here's why.  It is a reality, an ever-changing new normal, and a fact-of-life we, my family and I, live with every day, unflinching, head on, and one step at a time.  We are not being brave or courageous because in order to be either, you have to first be afraid. We are not afraid.  We don't like any of this, we are not looking forward to some of it, but we are not afraid.  We are neither fighting nor battling cancer; I'd hate for you to read those words in my obituary.  We are living with today's reality today in a way that makes good medical, spiritual and common sense for us.

Tomorrow's reality will come tomorrow, and we'll face it head on, then.

The Wrong Thing

Since my diagnosis with a life-threatening disease, I have had many conversations with many friends that usually, at some point, hit the sentiment that my friend is afraid to say the wrong thing.  There are many more unrealized interactions with friends who are so afraid, they can't speak at all.  That's a shame, if ever there was someone to practice on, I assure you it's me.  I believe that even the wrong thing said from the heart, without malice or bad intent, is the right thing.  For me, worse than saying the wrong thing is avoiding me.

But that's me, and that's not true of everyone.

Susan Silk and Barry Goldman, in an op-ed piece for the LA Times, suggest the "ring theory" in choosing one words in all crises - medical, job loss, divorce, death....  Their theory says to comfort in, dump out.

In short, imagine the person of concern in the middle of concentric rings.  It's their job loss, diagnosis, crisis...they can say anything to anyone as they come to grips with their new normal.  In the next ring is a spouse and the kids.  They may have concerns and feel like complaining about the situation, but they can't do it to the person in the middle, only outwards to the next circle.  That may include the employer, and very close friends.  Outwards from there is associates, parishioners, friends and extended family.  And so on.  (This incidentally is the exact order in which we announced my cancer; we actually thought of it in terms of concentric rings and started working from the middle out.)

So while you may wish to tell the afflicted that life isn't fair, it shouldn't happen to such a nice person, etc. that is exactly the wrong thing to say to the wrong person.  Believe me, I know first hand.  That kind of talk comes with an expectation that the person will offer you comfort - which frankly, I haven't the energy to do for outer circle friends and associates.  Offer me, offer my wife and kids words of comfort instead, and save your complaining to the person in the circle further out - your husband who's never met me, for example.

Here's a link to the original article.  If it won't help you in dealing with me, don't worry, you'll have lots of practice as life goes on and reality hits someone you can't avoid.  http://goo.gl/ZOKxr

My Cancer, My Fault?

Sometimes I get the feeling people are expecting all sorts of life wisdom from me because I've been diagnosed with a life threatening disease.  I wish they'd asked me when I was in my twenties.  I knew everything then.  But here's how things look to me today...

Something bad happens to a friend or a stranger, and we wonder why.  But then we take it a bit further and wonder, could it happen to me?  And then we construct reasons why it couldn't.  A home invasion on the other side of town - couldn't happen to me because it was that side of town and they were probably involved in drugs or something.  A guy I work with gets laid off - must be his fault, he must have been a bad employee.  Someone gets cancer - they must have smoked.  Has to be, otherwise it could happen to me.  Otherwise this could happen to someone I love.

People tell me I'm such a nice guy and this deadly disease shouldn't be happening to me.  They can't seem to come up with the name of someone to whom it should be happening, when asked.  And yes, I ask.  I know that's cruel.

People throw around the concept of Karma, which doesn't bother me if they're Buddhist or Hindu.  But I have to ask, if you believe in Karma, what do you imagine I did so wrong that earned me an incurable, ugly disease?

Sometimes crap happens to good people.  Sometimes crap happens to bad people.  At some point crap happens to everyone.  Assigning blame won't make you immune.

Accepting your own frail reality might bring you peace.

My Best Before Date

I'm getting all sorts of good press (if you count Facebook likes and Twitter retweets as "press") for the way I'm seen to be handling my life-threatening illness.  But there needs to be one good friend in everyone's life, and mine called it as he saw it.  "Are you in f*ck'in denial?"

Maybe I am.  Anyone can appear to be a hero before the going gets tough.  We haven't hit the tough part yet with my little problem.

Some people are impressed that I still go to work everyday.  I'm not.  I look at things as if I wasn't one of the privileged, as if I lived in a time or place where there were no social safety nets, no savings, no benevolent bosses.  In a different world I'd have no choice.  In this world, in many ways I don't.

But there is the other side of the coin.  If it happens that I expire before my best before date, then my wife and I will have missed out on the retirement years together.  Is it fair that I don't try to capture at least some of what that might have looked like while I'm still in great shape?

I am putting my resume in at Walmart later today.  I'm going to make a hell of a greeter.

End of Life Issues in 2015

2015 will be an important year in discussing end of life issues in Canada.  There is a federal election scheduled for October, and almost certainly the "Dying with Dignity" debate will be engaged.  Indeed, two of the major political party leaders have stated that only those candidates whose views match those of their own, that Canadians should have the right to physician assisted suicide, will be eligible to run for their parties.  Those parties are the NDP and the Liberals.  In effect, on this important matter of conscience, the leaders have instructed their members to check their conscience at the door and toe the party line.

In effect, Catholics are not welcome in either the NDP or Liberal party.  Aah, I hear you say, not every Catholic believes in protecting life from conception to natural death.  Aye, there's the rub.  Do you then believe it's cool if not every NDP or Liberal or Conservative actually believes in every plank of the party platform, swearing allegiance publicly but acting quite differently when it suits him?

I think the Catholic Church takes a lot of heat when it reminds it's members of the "rules", political parties not so much.  In truth, no Catholic can in good conscience run for Justin Trudeau's party.  That's too bad for two reasons.  First, Catholics without good conscience will run and that will be seen as tacit endorsement by the church (since everyone knows every Catholic's every word and action is a reflection on the entire church, especially when it's bad), and secondly that the well-formed conscience of any denomination or faith tradition will not be in the room.

It will be our responsibility to watch carefully and rise above the emotion, as the results will effect generations to come.  Powerful testimonial videos and interviews from suffering, terminally ill people will be the propaganda in favour of dying with dignity.  Less easy to find will be video testimony from those who wish to live with dignity until their dying breath.  Same prognosis, same pain, same suffering....different and uncomfortably unpopular expression of truth.

The Gatekeeper and Bad Manners

In sales we find ourselves often meeting the gatekeeper first, before the prospect.  You know the gatekeeper - it's his or her job to screen on behalf of the boss.  It's a productivity thing.  Unfortunately it can be costly, as most gatekeepers only have the authority to say no.  It's rare and refreshing to find one with the knowledge, confidence and authority to say yes.  These people are the bridge to a mutually beneficial relationship.

Unfortunately its increasingly rare to find a gatekeeper with good manners.  In working with my own team, each of us being gatekeepers and bridges for the each other, we have stressed the importance of courtesy and respect.  It is disconcerting the number of people I have met who are downright rude, not realizing that it reflects badly on their entire organization.  I once asked such a person if his boss was aware that he spoke to people with such disrespect, after he grilled and interrogated me, refusing to answer my questions or transfer the call to one who could.  And get this - I was trying to buy the product, not sell them anything!

Do your gatekeepers have the authority to be rude on your behalf?  You may not have explicitly granted it.  Maybe you ignore it when you pretend not to hear the way they speak to others.  Perhaps in your failure to definitively establish otherwise you have allowed it.  In doing nothing or behaving badly yourself, you may actually be encouraging it.

Cheerleaders and Cancer

When I was a student at QSS I used to enjoy going to the football games against our arch rivals: everyone else.  But especially Moira.  And Trenton High.

The cheerleaders looked pretty, the young men on the field were handsome and athletic, but I wasn't there for either.  (Actually, some of the guys were ugly spuds and a good face mashing into the turf would have only improved their looks.)

I was fascinated by the dynamics, the interaction, the hype and the strategy.  I paid closer attention to the coaches than the players, to the plays than the game.  One thing struck me then as strange and still does to this day.  It was the cheerleaders shouting "we're going to fight, we're going to fight, we're going to win!"

Seriously?  When we've never won against this team before?  Are you psychic?  And who is this "we" you speak of?  I'm not on the field; my buddies George, and Shane, and Donny and a bunch of other guys are.

Clearly they weren't talking to the players, it was to the team supporters.  Their job was to get us all hyped up so the positive energy would carry the day, or at least bolster the training, strategy and determination of the team.  I respect that.  Hey, keep your spirits up fans, we're going to need it when the going gets tough.

But there is no place for cheerleaders in my cancer diagnosis.  I really hate the encouraging posts and messages from my well-meaning friends "you're going to fight this thing, you're going to win..."  "if anyone can beat this, you can!"  "be strong and your positive attitude will help you beat this" and my absolute least favourite, "cancer picked a fight with the wrong guy."

No pressure there folks.  Bring on the marching band.

Mesothelioma is thought to be an incurable disease.  I'm not fighting it.  Here's my plan.  I'm going to focus on the strategies and the plan, and if we don't achieve a winning outcome, then at least to beat the spread.

Love the Job you Hate

It is a particularly first world, 21st Century notion that one should quit a job he hates, and pursue his dreams.  "Choose a job you love, and you will never have to work a day in your life," Confucius is supposed to have said.   Maybe one who lived in the 500 BCs could have conjectured a notion that would resonate so soundly with 21st century career focused men whose next meal is not in question.  Maybe.

There is a young man producing videos in which he talks about his life-threatening illness, and he finishes each inspirational video with all the confidence and cache of a man who knows everything, which is true of most young men in their twenties.  (It certainly was of me.  I wish you'd known me then - I had an answer for everything and didn't suffer fools.)

His advice in his popular YouTube videos (apparently even Ellen Degeneres has seen them!) is to do what you love, quit the job you hate, and eat dessert first.   I agree with at least one of those, and it isn't the dessert part.  I do think that, if we have the luxury, we should do do the things we love and enjoy as often as reasonably possible, if not for a living then for recreation and fun; not selfishly and never without consideration for our responsibility to each other and to God.

Doing the Things You Hate to Do
There is a particular strength of character that comes from facing down the challenges which most frighten us, annoy us, cause despair or that we just plain can't stand.  Seeing the task through, with all it's unpleasantness, is a life lesson learned in small chunks that prepares us for the big challenges in life.  It's even more enlightening to do it around people we don't like, or who can't stand us.

Embrace the unpleasant.  You just might find it ain't so bad after all.