OffKilter

Taking a break from the constant cancer updates, although sadly related, I'm feeling particularly peckish today about the sick leave discussion in the federal public service.

Moving beyond the sometimes ridiculously adversarial relationship that this government has with its employees, the issue of sick leave is at the forefront of many public servants minds.  After several years of downsizing and restraint, discussions about the much debated total number of sick days that federal public servants take feels like salt on a raw wound.  Public servants reacted - not as much to the loss of bankable sick days - but to another slap in their face, another indication that this government doesn't appreciate its own staff.

Rather than being the enemy of a frugal government, the public service is filled with economists, policy wonks, accountants, communicators, scientists, cops, lawyers, administrative assistants, computer programmers and (the list goes on and on and on).  Some of these people are brilliant, most are dedicated to serving the public good, and, yes, Virginia, some are slackers.  But the assumption that fiscal conservatives tend to have that public servants are NOT hardworking, or are spoiled employees with their hands out, is grossly unfair and extremely biased.  

Just like my friends and colleagues, when I hear the 'sound bites' alleging that “...the public service suffers from exceedingly high levels of absenteeism"..., words, that are accompanied with slippery statistics, and are clearly intended to raise the ire of all those voters who aren't fortunate enough to have benefits, to have sick leave, to have pensions, it seems ... well, spiteful.  And frankly, not entirely that bright.  Enraging your staff doesn't tend to make them engaged, happy and productive employees.  

For me, a sandwich generation girl, stuck between ageing parent(s), children, and an ill husband, I would love sensible sick leave reform.  I am now in a position to regret my decision to not return to the City, where I would have had the sick leave available to deal with not just one catastrophic illness in my family, but two.  

You see, many provincial and municipal employees have a very humane sick leave plan.  The plan allows for short term sick leave (of up to 17 weeks) for all employees.  Regardless of their tenure.  But if you've been there for just a year, you get a week at full pay, and up to 16 weeks at 2/3rds pay.  If you've been there for 10 years, it's 10 weeks at full pay, and 7 at 2/3rds pay.  And, the clock resets year after year. There is an 'escape' clause that allows the employer some measure of evaluation in cases where employees are ill too often.

Most large organization has short term and long term disability programs in place.  People get sick and the demographics of Canada and the public service are simply not going to help.  Our workforce is ageing.  Older people get sick more often.  Two out of 5 Canadians will get cancer at some point in their life.  

For me, as a public servant, BY CHOICE, having to take unpaid leave because I had the misfortune of using all snippets of leave to care for my mother during her cancer journey, well, that's a bitter pill to swallow.  So, I am hopeful that there will be meaningful reform of public service sick leave.  

Well, that is an overstatement - I would LOVE to see the government, unions and employees engage in a productive and constructive discussion on reform of sick leave.  But, unless some of the young spin doctors from out west take a deep breath and consider that one day, they too may get old or get sick, I think I'm left just wishing that we will be able to have the mature and reasoned conversation that is so badly needed.

I haven't had much stamina for writing or sometimes even thinking this past week, there is something that I need to write now. 

It was how wrong I was.  You see, when you go to a 'Cancer Doctor', amid the various forms that you fill in that list all of your ailments, you also fill out some forms on your mental and psychological state.  These questions help the doctors and social workers determine if you will need social services or extra  help.  And, one of the questions asked "Do you have someone to support you when you are ill?".  This question was about number 7 of 20 and all the other questions were easy to answer. But not this one.

This one dropped a lead boot in my gut.  And, so I skipped it.  And, then when I went back to it.  I pondered it.  And, then left it blank.

I knew that my hubby would be there to drive me to and from appointments, and if he wasn't able to, then I could get someone else to.  But 'support me?".  Well, that's a tricky one.  I've been doing the support in my relationship for some time now (see previous blog post - ), and my nickname is the 'rock'.  Sometimes I feel like I am a rock on quicksand, and I hate that label, but it was given to me because when others can no longer cope and need to walk away, I'll always take up the slack.  

It's not that I can't ask people to do something for me, I'm great at that.  But if they can't - well, it usually means I'll think long and hard about asking for anything again, ever.  No matter how unreasonable my request or how reasonable their reason not to do me the favour.  It's a longstanding flaw - I hate needing anyone and I hate hearing "No".  So, I avoid both at all costs.

The week before surgery, friends were trying to support me and I was trying to accept that support.  But from the first time I awoke to find my old neighbour (a nurse at the Hospital) holding my hand, I've felt support.  I could write a lot of names down now.  

My husband - who just sat at the hospital so I could sleep.  Who swept all the gifts and flowers out of the incredibly tiny room when we all realized, that Lisa truly is claustrophobic and then stayed (maybe to make sure I didn't make good on my prison break promise though!).  

My sisters - who cleaned my house and corralled my kids, who brought books, scarves and told me that it was going to be fine, and who made sure I had the quickest delivery of the prettiest of flowers.

My dad - who came to the hospital to just sit.  To just be there with me.  

My daughters - the oldest who tried to step up into the "Mom" role and my little one, who kept those beautiful brown eyes steady when she first saw me at the hospital and said "Aw sweetie".... words straight from my Mother's spirit through my daughter's lips. 

My friends - barn friends who sent flowers, food, drove the rider to the barn.  Work friends who sent quilts and flowers and notes of concern.  Dear friends who just want to ask if there was anything they could to help.  Facebook friends, some of whom are old friends, dear friends that I use FB to connect with, and some are truly online 'friends'.  But, when I decided that I should let people see the scary incision in advance so that maybe there would be less shock, fewer tears, in person, my FB friends sent encouraging note after encouraging note.  

I promise I do have a funny story or two to tell about my hospital stay - but for now, I just want to let you know that I appreciate you all.   

Pre-cancer my little family was in the midst of a completely different type of health crisis.  We were on a long and uphill road.  You see, a little over a year ago, my husband found that life - kids, work, marriage was getting too hard.  And, he started to head off the rails a little bit.  Then more than a little bit.  Then little things became huge things and worry became his whole, entire life.  

We learned a valuable lesson about the little pink pills that Doctors prescribe for folks who start to struggle.  For 95% of folks, those little pink or blue pills help, take the edge off, reset some of that muddled brain chemistry.  And, then there is the 5%.  And, who knows if you are in the majority until you start to pop those little pills.  And, if you aren't - well, it's really hard for friends, family and physicians to know if it's the pills fault, or if you need a stronger pill. 

We ended up losing about a year to this process.  And, as I watched my husband completely and totally lose his way, and become someone I didn't like and didn't want to even know, I also saw into the hearts of those who were around us.  Sometimes egotistical, partially educated and grossly overconfident people can be extraordinarily dangerous.  When you feel like you are drowning, you will grab onto the nearest hunk of floating debris.  And, cling to it, especially if the promise is health, happiness, or, the possibility of "self-actualization".  

Lucky for us, we had people who stood, like the old growth trees in B.C., just stood there and said the same thing hundreds and thousands of times.  Finally, with an old, brusque Doctor's help, we started to break free from the tangled and stinking forest we were in, and the further he got away from the toxically opinionated, those who pushed him towards a path that fit their world view and their stunted understanding of human nature, psychology, and love, the better he felt.

But we were just on the path out, he was still not my guy.  He wasn't the person I married.  He wasn't my solid landing place as I was the rest of my family's "rock", the guy who was the 'super dad' of our neighbourhood, this kindest of men.  

Then I got sick.  And, he seems to have woken up.  Is it guilt?  Is it a sense that he has no choice?  Have the stars simply aligned at the right time?  I truly don't know, but can say that having him back is a godsend. 

I can't trust that he'll stay as he is.  And, the memory of all that has happened rests very close to the surface, dangerously close more often then not.  People say - he was sick, or "they" were just trying to help - but words and actions carry with them real costs and real consequences.  No matter what the slogans say.  

But at least he seems to be himself, for now.  And, so it seems that the best cure for anxiety turned out to be a good healthy dose of cancer.  It's probably not a recommended treatment - but hey, it seems to work!

For all those that tire of these seemingly endless cancer related posts, I'm sorry.  I can't seem to help myself - the darker the night becomes, the more the thought of these cancer cells, this tiny spot on my tongue, whirls and twirls in my mind.

One thing that I can't quite work out is why I react so strongly, so instantly and so adversely to everyone and everything that says that I will win the battle with cancer.  That I have to fight cancer.  

It's everywhere you look - everything you read about cancer is cloaked in verbiage and imagery of battles, wars, fights.  I fought cancer.  Join us in the fight against cancer.  Friends don't let friends fight cancer alone.

But what are we fighting?  Cancer is a natural order that has gone out of whack.  Cancer is simply a little collection of cells, a little part of the body that won't die when it's supposed to.  Cells live and cells die.  Cancer cells just don't die when they ought to.  It's hard to accept that something as simple as that can kill you.  If these cells are your cells - who ARE you fighting? 

Perhaps because we use such harsh tools to rid our bodies of these growing clusters of cells - poisons that kill cells, good and bad - radiation or scalpels to carve out the offending cells.  Perhaps those tools seem so much like weapons of war that we need to invoke the battle imagery.  We need to wage war against this invisible and insidious adversary. 

But fighting is such nasty business.  You have to be angry to fight.  You have to be pissed off, square your shoulders and be strong to fight.  I know how to be strong, but I don't want to be angry.  Angry doesn't feel healthy - and since the diagnosis I have spent a fair bit of time trying to accept the randomness of it all, the complete and total shitty luck, that has given me, the lone and constant non-smoker in my family, a smokers' cancer.  

I'm trying to cope with these flushes of rage but I don't want to fight anyone, or anything.  I would prefer to simply survive it.  Sounds odd, doesn't it?  

I'm taking this next week off work, a move that feels selfish given the circumstances of my employer, but I'm heeding my Doctor's advice to build my immune system back up before the surgery.  I'm going to go and visit my Mom, or at least that big old pine tree that shelters her soul at that big old lake that was there long before me and will be there long after me.  And, I'll ride my horse, hang out with my family, and get a massage. 

My hopefully competent and quite caring surgeon can wield her scalpel as a weapon, and we can see if we need to do more after the surgery.  

But in the meantime, I'm going to spend my time finding some peace.  

Years ago I did the Myers-Briggs test and was so intrigued by the concept of intuition.  Finally, I had a label for how I had always lived my life and made my choices.  For better or worse, I've let my feelings and intuition guide my life.  I love nothing more than "reading" people, and I find nothing more entertaining than watching passionate people debate real issues.  I love helping people understand why people or issues are stuck, and getting them moving forward again.  And, when confronted by people who hide their feelings and shelve them in hard to access places, I love chinking away at their armour to be able to understand them better, to get a window into their minds.  For me, intuition is nothing more than the power of observation on steroids.

But, my love affair with intituion is also why, from the first minutes when the dental hygienist and assistants were dancing around my mouth measuring my little friend, my soon to be diagnosed tongue carcinoma, I quickly jumped to the cancer conclusion.  Not from any lack of professionalism on their part, but their concern pushed my intuitive lizard brain into full alert.  Once I did my internet sleuthing, well, that bad feeling I had in the dental office grew roots.  

It's a hard slog in our pithy positive world to be honest and say that you have a bad feeling.  People think it means that you think you are going to die.  They chime in wanting you to be positive.  To think positive.  To broadcast your sunny outlook to the world.  And, funny enough, when my co-worker was recently diagnosed with a different type of cancer, I was ALL ABOUT the positivity.  We need to say something, to do something because we care and we feel like we have nothing real to offer.

But, being positive doesn't change reality.  It doesn't change the cancer cells that continue to grow and multiply.  It doesn't change the reality that over this past year of my life, this most shittiest of years, I have felt like absolute crap.  And berated myself for my weakness, my fatigue.  It doesn't change those microscopic little cells that may or may not have floated their way to my lymph nodes and could be the changes that the CT scan found in two of them.  

Only time, surgery and a biopsy will tell if those are stressed out lymph nodes or cancerous lymph nodes.

The one thing that I do know right now is that it always seems that whatever you expect to happen, is not what happens.  Life just doesn't seem to work that way.  It doesn't mean that it won't all work out in the end, or that the slog through won't be worth it.  

But, for me, at least, it means that I'll spend my time LIVING today and I'll think about tomorrow when tomorrow comes.  Oh, and, next time that little voice tells me to go and see the naturpath, I think I'll go!  

Since the first appointment I had with the Doctor when they explained the 'tongue resection' to me, I have spent a lot of time worrying and researching ways of keeping that scalpel away from my tongue.

Just give me a little radiation, I thought, and leave my tongue alone.  Some of the big hospitals in the states do a chemo/radiation combo rather than surgery.  Oops, then I read about how you may end up losing your teeth with the radiation.  Hmm - teeth or tongue - well, that's a question you don't think of asking yourself, is it?  Luckily for me, I always can use my Dad as an example of strength, courage AND perspective - after all, to save his life, he lost his leg.  I guess I can lose a chunk of tongue to rid myself of the cancer.

But wait, more reading, more studies by the National Cancer Institute and I find that many cancer centres prefer to take out the lymph nodes preventatively.  So now I find myself switching from the 'keep that scalpel away from me' side to the 'keep on slicing' side. 

I'm in the cancer treatment river for sure though, had my CT scan and have a surgery date booked.  The CT was quick and I was very glad that they told me that the contrast dye delivered via an expertly placed IV would make me feel like I was peeing my pants.  Even after being told, I still had a momentary panic thinking that maybe Shoppers was right when they sent me that Poise sample in the mail!  

With my surgery date booked for a little over a week from now, I've put a call into the Doctor's office to get a better understanding of their recommendation to not do a neck dissection.  It's hard to imagine that I'd feel like having someone give me a frankenstein like scar, but once you've hacked a chunk of tongue out, is the Frankenstein scar that much of a worry?

And, in other more interesting priorities, as I continue to float and bob along the cancer treatment river, I'm starting to plan my upcoming TV time.  Is it time to start watching the Walking Dead?  Should I order Season 3 of Homeland?  

Big decisions, little decisions, all in good time...

I'm sick.  And, I'm angry - angry all the time.  Why?  Other than the obvious, because I feel so stupidly guilty for not doing everything that I am supposed to do.  We are told as woman that we have it ALL.  What is it that we have?  We have jobs that are equal to our husbands, but our jobs don't end at 5pm.  We go home and 'run' our houses - kids, appointments, furnace repairs, we juggle it all.  And, our husbands, well, they are getting lost in the world of the Supermom. They help out in the second shift, but they can't measure themselves by the yardsticks used by their Dads.  And, they aren't their Moms so what is their role in this new world order??  How many men do you know that seem a bit lost - more than we would probably care to admit.

Then back to us, us warrior woman, caught up in our daily juggling act, supporting and goading each other into more and more.  If we pull back at home, we feel guilty.  If we pull back at work, we feel guilty.  When our bodies fail us, we feel guilty.  And, so we keep juggling, and juggling, and juggling.  And, then a ball drops, and we rush to the closet to sweep up the shattered glass and throw another ball up.  All the while quoting positive and self-empowering words to each other to get us through to the next day.  

Even before THE diagnosis, I tried to read Sheryl Sandberg's book, "Lean In" and it pissed me off.  Angered me to the core, because we are so busy wanting to be just like the boys, and as good as the boys, that we forget sometimes that we aren't boys.  And, if we weren't so busily competing for success, we'd realize that the world is getting seriously out of whack.  Instead of busily looking to others to see how well we are doing or running on our own personal treadmill to keep our place in it, we could stop, stand, breathe and think.  

Do what's right for us, and what is right for our families will naturally follow.  

It took a cancer diagnosis and a week in Toronto feeling like crap while pretending to be 'fine' for me to decide that, for me, with balls falling all around, it's enough.  

I found Lexi's papers cleaning up the office.  As of May 8th, my Lexi (for those of you with crappy middle names, consider her name was.... Patches... eeww) is going to be 10 years old.  She's been in my family for almost 5 years now.  

The moment she put her face in my coat on a cold March day in 2009, I fell in love with her.  Her long and tangled mane, her kind eye and her prettiness entranced me.  I was fast to overlook those crooked legs, those never seen a farrier before hooves, and the whole unbacked thing.  That didn't faze me at all.  

My first brush of fear came when I watched the former bull rider turned horse whisperer ride her in his round pen.  And, saw her buck and give him a good body slam into the sides of the round pen (of course, Reuben being Reuben just pushed himself off the sides and stayed on!).  After that, I wondered what I'd gotten myself into and it took a long time to get some modicum of confidence between Lexi and I.  But it seemed every time we were moving forward, something else would happen.  

Hooves, fractures, hooves, I'd become expert at noticing the slightest hint of unevenness in a horse's stride, the slightest 'off' feeling and the frustration started getting to me.  One day, when it was bleak, my Zen master and I took a walk in the woods and we decided it was time for Lexi and I to part company.

But that didn't happen - and, today I think maybe I see why.  You see, the undercurrent of anxiety that has ebbed and flowed and coloured my riding has turned into rapids in the spring.  So much so that I'm just about jumping out of my own skin when ice falls from the roof of the arena, or a pigeon flutters its wings.  And, so, I've decided to go straight back to the beginning.  Trust, relaxation, calmness and quiet in hand and lunge work.  If she can be calm, then maybe so can I.

And, watching my pretty girl watch me and do her best, I'm falling in love with her all over again.  I hope I don't end up being one of those middle-aged parelli ladies who never rides, but, for right now, that's what I am.  And, having fun with it.  

So, Lexi, you'll get lots of carrots on your birthday.  You may not be particularly rideable or athletic, but you are just meant to be in my life.  

As I rushed to the appointment, running late for no reason other than really not wanting to have to go at all, I thought of all the things I've read about oral cancer in the last two months.  Then I thought about why I never considered it important to think about my health or my well being over the last few years.

Since the oral surgeon said "I'm afraid I have bad news...", I've been researching and struggling to keep an even keel.  But, despite my best efforts, I found my mind skidding around corners, peeking under beds for monsters that I had read about, seen pictures of, and wanted no part of.  

Today's news was good news- they don't expect that I'll need radiation.  I'll have to have a CT scan in the next two weeks to confirm but they don't expect that I'll need a 'neck dissection" (code for taking our your lymph nodes and giving you a nice Frankenstein like scar across your neck).  But I am going to lose a goodish chunk of my tongue.  

The news that the tumour is less than the magic 4cm took me by surprise.  We live in a world where guidelines dictate so much of how we live and what we do - and for tumours on your tongue, 4cm is a magic number.  Over 4cm, and they automatically take out the lymph nodes on that side of your neck.  Under and they don't.  

For now, my two little tongue friends "seem" to be about 3cm.  Once they carve into my tongue and take an additional 1cm around the two cancer demon buddies, I'll be losing a long slice.  Might affect my speech, might affect my swallowing - but I won't have to do radiation.  

So while part of me is relieved, part of me is pretty sad.  This gets more real by the day.  And, I like my tongue.  Even more so now that I know that it's been harbouring those little demon cancer cells and fighting the fight all on its own.   

But the scars will be there for inspection, and every time I open my mouth, perhaps I'll remember to put myself somewhere on the priority list.  

Over the last thirty odd years, I've had lots of jobs.  Done lots of interesting work, lots of horribly boring work.  Worked with people that I grew to care deeply about, and some that I grew to kinda hate.  

Making the move to the federal government was a hard move, but well worth it when my kids were little.  At times I've chafed over the work.  Over the last six years, I've had some really great opportunities to do some "fun" work.  And, each and every time cancer has stopped me.  Yep, cancer seems to be stalking me.

Somehow though, something in the universe seems to link new work opportunities with cancer.

Six years ago, I was approached to work as the EA/Policy Analyst for an ADM.  I said No, then No again, then No again.  The ADM in question, while very talented and successful, had a personality a little too similar to mine for comfort.  I felt like there would be a good chance of a blow up at the end of some random long week - that would end badly for the one much lower on the totem pole.  Then, ADMs changed, I was asked again, and off I went.  Feeling empowered and using my one claim to fame, my ability to talk, cajole or force people to do what I wanted, when I wanted it... no matter how unreasonable the timeframe.  

Fast forward a few months, and my Mom is diagnosed with an aggressive cancer - a quick calculation of my emotional and physical capacities - and I'm off work for a couple of months to get Mom through her chemo and radiation.  And, say goodbye to the cool job.  

Some time passes, and another really neat opportunity presents itself.  I'm working with a bunch of folks who's pinkies and baby toes are smarter than I am.  To whom I HATE to say that I graduated from... cough... Carleton.  Even though I've suddenly dropped 40 IQ points, I'm keeping my head above water.  And, enjoying the challenge.  

Another fast forward, and my Mom's cancer is back with a vengeance.  It's spread to her brain.  She has little time left- who knew that little time would actually mean five months and five days.  I take heaps and loads of leave, every little scrap and then some.  And, after she has passed away, I've lost my way.  And, soon the assignment ends and I'm no longer in the cool albeit challenging job.

But life goes on, kids are trundling their way into their futures, and although work is horrible because we are downsizing, and downsizing and I watch good friends become affected, and I can almost taste their bitterness in my mouth, the part of me that loves being busy, starts getting a kick out of my job.  Then, due to other's misfortunes, I get an opportunity to travel internationally.  Oooh, now this could be fun.  

Oh no, another quick fast forward, and the stupid asinine sore spot on my tongue turns out to be not so asinine.  Not so irrelevant.  In fact, it's cancer.  Oral cancer.  Kinda rough to take since I have NEVER smoked, don't drink, have none of the risk factors.  But yeah me, I have cancer. 

I know the drill, was there at my Mom's diagnosis, and now wait to get swept into the river that is cancer treatment in Canada.  I'll wait for the appointment with the oncologist, I'll try not to go mad wondering what stage I am at, I'll wait for the CT scan, I'll wait to have surgery booked.  I'll have radiation.  And, hopefully, at the end of it, I'll have enough tongue to talk.  

But fuck me, enough is enough.  Three times better be the charm.