There are many portages on this trip

16 May

During my younger years I spent most summers canoe tripping near Lake Mazinaw in Ontario, Canada.  Some times I reflect on these trips as idyllic travels through the bucolic yet rugged landscape.  Other times I have recollections such as:  paddling down Long Lake, into a stiff breeze, fighting whitecaps, and occasionally bouncing my paddle off the noggin of one of the numpty-heads who weren’t pulling their weight (known as lily dipping to the uninitiated), watching the skies darken as we paddled toward a portage which had to be covered before we could set up our leaky tents, struggling to get a suitable fire lit, and putting some food in our bellies before finally collapsing into a waterlogged impression of sleep.  The portage featured the great thrill of lashing the paddles to the thwarts, hefting a 60 pound canvas pack on my back, securing the tump line around my forehead, and hiking the 120 pound, cedar strip canvas covered canoe onto my shoulders, welcoming the blackflies into this new-found cover, finding at least one deer fly which would torment me ’til it finally decided to remove a large chunk of my flesh only to announce to his pals that there was a splendid buffet on offer beneath this green shelter.

I confessed to one of my Mazinaw camping colleagues recently that the latter experience informs more of my impression of canoe tripping than the former.  Hard slogging, muddy, sweaty, dirty, tiring, irritating forced marches and endless hours of paddling always against the wind and in return we enjoyed…well, what?  The achievement?  The occasional spectacular sunset?  The infrequent discovery of wild raspberry fields to share with the Madawaska black bears?  The rare retrieval of a lovely fish from the sparkling waters?  The three a.m. wakening by bears and racoons battling for the suspended food packs and your tent mate shining a blazing flashlight into your eyes while waving around his pathetic little jack knife which I guess he thought would prevent us from a fatal bear attack?

When undergoing a character-building exercise it is often hard to see the long-term benefit while swatting away the annoying hum of the everyday mosquito and recently I thought that this is a bit analogous to the caresharing job.

Just when it seems as though have reached safe harbour with the waters as still as glass and the loons serenading us with their melodic calls a sudden squall appears from no where.  The waters immediately begin to churn as the sky once again darkens threatening yet another downpour of anxiety-creating worry.

It is interesting to me (if I could achieve clinical detachment) that these episodes can arise even in the absence of any particular crisis.

Katie is thriving.  The kids, albeit maniacal at times, are so happy to be able to play outdoors again.  The flowers are coming up.  For the first time since moving in here we actually have a lawn that looks less like a dandelion nursery and more like a golf course.

That’s where the portage analogy began to work for me.  This caresharing trip is never really one which ends.  It can feature moments of great beauty, heart-warming events, and even the very occasional episode when one forgets what has transpired in the recent past.  But then comes another followup appointment.  Purely precautionary but nevertheless one which takes us back to the oncologist and one which brings us back into the surroundings that generated such dark feelings not too long ago.

In my therapy group yesterday, I heard the tale of someone whose story tore at my heart. Someone who has performed heroically as a caregiver since she was a young girl and who only now is beginning to realize that the job can be lonely, it can be one which causes us to sublimate our own needs, one which creates a very real hesitancy to ask for help.

She has travelled so many portages and ultimately she didn’t find the restful campsite at the conclusion nor did she seem to think that she deserved it.

So here is my plea to all who read this – it is important to feel felt.  It is not weakness to ask for help.  It is not failure to experience the genuine doubt that arises from time to time and it is not absence of strong character which can lead us to crumble when least expected.

We all need to find a resting point on the portage.  Take a moment to smack the shit out of that deer fly.  Relieve your thirst and hunger with a long drink of cold, fresh water and freshly-picked raspberries.

It is our privilege to carry the pack, to feel the tug of the tump line, to experience the slow burn of our legs as we mount another rocky slope.  We have the privilege, the honour and the trust of those whom we most love.  That is the purpose of our journey.

BTW:  Katie can now be followed on Twitter (@KerrKate).  I highly recommend it.  She tweets some very cool stuff and has good insights on a variety of issues from creative inspiration to daily coping.

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Warmth

6 May

Don’t really have much to write today.

Just this – it has finally warmed up here in Southern Ontario.  Beautiful weekend spent mostly outdoors. Have the slightly burned bald head to prove it.

Anyway, Katie made a very moving comment – “Isn’t it great that I am here?”

Yes, Katie.  It is great and we three boys love that you’re here to share your warmth and the warmth of the sun with us.

Over and out.

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Collateral damage

25 Apr

Collateral damage is damage to things that are incidental to the intended target.  It is frequently used as a military term where it can refer to the incidental destruction of civilian property and non-combatant casualties.  Wikipedia

It is clear there are many motivations to cause someone to write, to share, to express, and sometimes to vent.  I was tempted to vent today.  Upon reflection I shall not.  Not because it mightn’t be cathartic. Because venting is not particularly useful in this case. This case is about the insidious impact of cancer and it’s continuing ability to throw curves and the occasional knuckleball.

My story today revolves around the notion of collateral damage and it has specific reference to my sons and is even more directly centred on Gabriel, our five-year old.

Regular readers will know that when Katie was diagnosed Gabriel had only recently turned four while Sammy was just approaching two.  If we are grateful for anything related to this it is that Sammy was too young to comprehend that an asteroid had just hit his house and the next couple of years would be spent in recovery and rebuilding.

Gabriel on the other hand has been a sensitive soul since birth.  He’s a lovely boy with big brown eyes and a thriving curiousity about all that surrounds him.  A student at Clanmore Montessori, he was being taught to explore, touch, feel, and sense all that he came in contact with and his teachers had done (continue to do) a wonderful job in forming his mind.

The formation of a child’s mind is a hugely complex undertaking and one we’re learning more about every day.  We are fervent disciples of Dr. Dan Siegel’s book The Whole Brain Child and it was a passage within it that partially gave rise to this posting.

“In fact, even though entire libraries have been written discussing mental illness, mental health is rarely defined.  Dan has pioneered a definition of mental health that researchers and therapists around the world are now beginning to use.  It’s based on the concept of integration and involves an understanding of the complex dynamics surrounding relationships and the brain.  A simple way to express it, though, is to describe mental health as our ability to remain in a ‘river of well-being.’

“Imagine a peaceful river running through the countryside.  That’s your river of well-being.  Whenever you’re in the water, peacefully floating along in your canoe, you feel like you’re generally in a good relationship with the world around you.  You have a clear understanding of yourself, other people, and your life.  You can be flexible and adjust when situations change.  You’re stable and at peace.

“Sometimes, though, as you float along, you veer too close to one of the river’s two banks.  This causes different problems, depending on which bank you approach.  One bank represents chaos, where you feel out of control.  Instead of floating in the peaceful river, you are caught up in the pull of tumultuous rapids, and confusion and turmoil rule the day.  You need to move away from the bank of chaos and get back into the gentle flow of the river.

“But don’t go too far, because the other bank presents its own dangers.  It’s the bank of rigidity, which is the opposite of chaos.”*

It is difficult for me to contemplate the notion of mental health when thinking about my children.  One has a perspective of them as being total innocents just beginning a wonderful journey through a sparkling life where little can intrude upon their sense of wonder apart from the occasional scuffed knee or earache.  Until I began to think of my boys as little people, not just tiny toys, none of this made sense.

Then I realized that Gabriel had been floating along pretty comfortably until his Mommy and Daddy moved from Toronto to Oakville when he was still an infant.  Then Mommy and Daddy introduced to him another human, a brother, a sibling, a rival – something that quite often smelled bad and made a lot of noise at inconvenient times and seemed to get an awful lot of attention.  Then Mommy and Daddy decided to move him and, by the way, bring along that little smelly, noisy thing to another new house.

And then…

Mommy got sick.

His canoe now was well and truly bumping along the banks of chaos and what made it even worse was that his Daddy may not even have noticed because Daddy was preoccupied with the fact that…

Mommy was sick.

For grown-ups the onslaught of a cancer diagnosis is overwhelming.  Can you begin to imagine the impact upon a little boy, very aware of his environment trying to understand that something very different was going on in his family but being incapable of fully absorbing, expressing, and understanding?  Can you imagine, when it is so important for all of us to feel felt, what this little boy was struggling with and doing so all the while enveloped in a cloud of big-person words and clearly confused parents who were behaving very oddly and not at all in the way to which he had become accustomed?

Can you then begin to imagine what happens to the parents when they begin to witness behavioural changes in their little angel?  What’s going on?  Is this just a phase?  Surely he’s not succumbing to the same fears and uncertainties that we are just learning to manage?  After all, he’s just a little boy.  He can’t understand what cancer is and what it might potentially mean and really, we’ve been ever so careful to gently inform him in ways that we thought to be open yet non-threatening to his welfare – both physical and emotional.

I am here to tell you folks, your kids get it.

I am here to tell you Dads, your sons and daughters know what’s happening.

I am here to tell you caresharers that your caregiving activities just got bigger and even more complex.

And, I hope I am here telling you this before you wake up one morning and realize that there has been collateral damage in your home.

Wrap your children in whatever approach you decide to take.  Keep them informed or shelter them.  Try to teach them about chemo sharks or keep these discussions to late-night parental conversation.  Whatever you choose be consistent.

We chose to bring our children into the fold and to share, as best we could, what was happening at all stages.  We believe that they are intelligent and won’t succumb to parental anxiety.  While that may have been wrong at the very least we stuck to our guns and didn’t try to blow smoke.

If Gabriel has become anxious about talk of doctors and hospital visits, that is our accountability.  It is further our accountability to help him find his way through this by helping him continue to grow his whole brain.

That is our vow.  We cannot undo what has been done but we can certainly bring an even more mindful approach to ensuring that the collateral damage caused by this horrid disease does not disable our kids’ emotional connection to the ups and downs of life.

With perseverance and commitment we will find a way to bring Sam and Gabe back to the middle of the river and provide them with the smoothest ride possible while still helping them acknowledge the realities of life and living.

*Copyright 2011 by Mind Your Brain, Inc., and Bryson Creative Productions Inc.

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Run Katie. Run!

16 Apr

A couple of days ago, Katie announced to me that she was not only going to participate in the Run for the Cure again this year but that she was going to obliterate the field with raw speed and dynamic power.  I am not about to argue and those of you who know her well will understand why;-)

So, this note launches the appeal for support for Kate’s Pigeons Deux.

I have the honour again to captain the team and in this note I am asking for people to join the team and/or to consider donating to the team again this year.  We had a very successful event last year and we are hoping to raise more funds in this worthy cause again.

The event will take place on October 6.

More to follow.  My purpose today was simply to place you on alert.  Of course, if you want to join please do so and if you’re ready to donate please do so.  All instructions are on the site.

Thanks so much and I promise not to pester you — much!

Don Kerr

Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:
http://www.runforthecure.com/site/TR?px=2925482&pg=personal&fr_id=1703&fl=en_CA&et=1muQVeodIXWRNETtRqBlXQ&s_tafId=60162

Click here to view the team page for Kate’s Pigeons Deux
If the text above does not appear as a clickable link, you can visit the web address:
http://www.runforthecure.com/site/TR?team_id=52295&pg=team&fr_id=1703&fl=en_CA&et=HW0oSD_uF_6BcjsM2JE1kw&s_tafId=60162

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Caresharing and receiving

12 Apr

As you might know, I’ve started to share these postings on another site caregiving.com

It’s a comprehensive source of information and inspiration that I recommend for those readers in either the caresharers role or anyone on the cancer treatment trail.  It is, I think, helpful to broaden perspective and realize that we are not alone.

Reflecting upon my recent interview with Denise Brown and listening again to my commentary one thing struck me right smack in the gob – I insufficiently gave credit to the many people who stood by us during the darkest moments of Katie’s treatment.  If you read the article published in MetroNews last October you will recall it profiling some of those people – Nana & Bapa, Katie’s brother Andrew, Katie’s friend and boss (in that order) John, Katie’s best friend Alex – and I needed the reminder that without them we would not have emerged from the treatment tunnel as well as we did.

So this is a bit of a make good and further acknowledgement that I think the term we should aspire to is ‘caresharing’.  I am learning from new acquaintances on caregiving.com that there are indeed some folks who are pretty much on their own and their fortitude astounds me.  Many care for multiple people in their family.  Many face considerable personal health challenges which they somehow manage while giving so much to those they care for.

It is abundantly clear to me however that we do not take this journey on our own. We should all be travelling in the HOV lane and recognizing that our personal environments are greatly enriched when others are allowed in.  Yes.  ALLOWED.

There’s a certain stubbornness that I think exist in men in particular wherein we figure we are islands unto ourselves and that we can manage it all.

I am here to tell you from first-hand experience that that hypothesis is fatally flawed.

What we need to learn is that to become a good caresharer we need to let people in – we need to learn how to receive and hence the link beneath.  Denise has a very cool exercise on the site wherein she asks people to write in six words their description/definition of various aspects of caring.  My response to her query regarding receiving was – a warming zephyr blankets with relief.

What’s yours?

http://www.caregiving.com/2013/04/in-six-words-whats-receiving

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More help please

9 Apr

I am posting this on behalf of my wife Katie. Any advice or resources you can suggest to help improve our knowledge much appreciated.

I follow a carefully planned, dedicated “mind body regime” including diet, exercise and stress management.

1. anti cancer/ anti inflammation/ low glycemic diet
2. Runner 5 days (Aerobic), weight training 5 days (strength resistance) and yoga 5 days (flexibility)
3. I am a 3 year student in mindful meditation and practice formal sitting meditation and zen 5 days week.

Following my chemotherapy, radiation and tamoxifen regime is a “continuing low immune system” all I can expect over the long term and If so, what are the implications of this?
Will a compromised immune system ultimately become an environment which fosters more cancer?

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The sound of my own voice – eek!

9 Apr

Today I experienced the privilege of joining Denise Brown of caregiving.com on her radio program.  We chatted for about 25 minutes and it felt like 2.  Upon listening to it I am reminded of two things:  most of us dislike the sound of our own voice (seriously, I think I sound a bit like Elmer Fudd); and, two, I wish we had an instant edit capability when we speak.  Anyway, I completely respect the work Denise does and if you would like to hear my Elmer Fudd you can do so via this link:  http://www.blogtalkradio.com/caregiving/2013/04/09/dons-caregiving-story

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True beauty and inspiration

3 Apr

It never occurred to me that I might one day begin a blog posting with a quote from Jacqueline Bisset but here goes:

“A mode of conduct, a standard of courage, discipline, fortitude, and integrity can do a great deal to make a woman beautiful.”

Actually that wasn’t that hard!

But why this quote and why the photo of the space shuttle re-entering earth’s atmosphere?

Each are a testament to the courage I have witnessed first-hand with Katie and vicariously through reading of the recent adventures in India of some of my blogging colleagues Katie Evans, Alex Ginty and Terri Wingham.

Having experienced all of the horrors of breast cancer these women have found within them the fortitude to re-enter full life with vigour and commitment.  While each of them has their own physical beauty it is the shining through of this sense of purpose that inspires me.

And while the LGFB foundation has done remarkable work in helping women overcome the many challenges of cancer treatment through the remarkable work of its many volunteers and support of great corporate sponsors, it is this notion of courage that I find awe inspiring.

I will never be more proud of my wife than I am right now.  Finding her way through the rigours of treatment she has truly been re-created.  She has become an even better and more solicitous and committed mother to Gabriel and Samuel.  She has become an even stronger pillar of support for me in my efforts to rebuild my business.  She has become an even more important contributor to the ‘real’ lives of those with whom she works.  She has become an inspiration to many people who quite simply had either lost their way or forgotten those little moments in life that bring us real fulfillment.

She has become even more beautiful and that’s all I wanted to share in this post today.

For you male caresharers out there – I know that there are what seem like insurmountable challenges in riding shotgun on the breast cancer trail.  I promise you however that if you willingly accept your role and willingly allow your vulnerabilities to come to the fore, you will find yourself in the company of a woman whom you can love more than you thought possible.

I promise.  It is true.

It is hard.  It is the greatest challenge you may ever face but I encourage you to remain powerful in the face of adversity for when you re-enter your re-created lives together you will in a very strange, bewildering way be thankful for the opportunity to regenerate your passion.

Katie – you inspire me.  Thank you.

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The last day of the beginning

2 Apr

Today marks the final day of my mindfulness training and yet it also marks a beginning. During the past 12 weeks it was my privilege to meet some wonderful individuals and to learn a little bit about their stories.  I thank them for that and am posting this passage from a remarkable little book I am reading right now as a formal token of my appreciation for their help in my coming to better understand “the dilemma of being human.”

Harold believed his journey was truly beginning.  He had thought it started the moment he decided to walk to Berwick, but he saw now that he had been naive.  Beginnings could happen more than once, or in different ways.  You could think that you were starting something afresh, when actually what you were doing was carrying on as before.  He had faced his shortcomings and overcome them, and so the real business of walking was happening only now.

Every morning the sun crept over the horizon, peaked and set, as one day made way for another.  He spent long moments watching the sky, and the way the land changed beneath it.  Hilltops became gold against the sunrise, and windows reflecting its light were so orange, you could think there was a fire blazing.  The evening shadows lay long beneath the tress, like a separate forest that was made of darkness. He walked against an early-morning mist and smiled at the pylons poking their heads through the milk-white smoke.  The hills softened and flattened, and opened before him, green and gentle.

Harold passed office workers, dog walkers, shoppers, children going to school, mothers and buggies, and hikers like himself, as well as several tourist parties.  He met a tax inspector who was a Druid and had not worn a pair of shoes for ten years.  He talked with a young woman on the trail of her real father, a priest who confessed to tweeting during mass, as well as several people in training for a marathon, and an Italian man with a singing parrot.  He spent an afternoon with a white witch from Glastonbury, and a homeless man who had drunk away his house, as well as four bikers looking for the M5, and a mother of six who confided she had no idea life could be so solitary.  Harold walked with these strangers and listened.  He judged no one, although as the days wore on, and time and places began to melt, he couldn’t’ remember if the tax inspector wore no shoes or had a parrot on his shoulder. It no longer mattered.  He had learned that it was the smallness of people that filled him with wonder and tenderness, and the loneliness of that too.  The world was made up of people putting one foot in front of the other; and a  life might appear ordinary simply because the person living it had been doing so for a long time.  Harold would no longer pass a stranger without acknowledging the truth that everyone was the same, and also unique; and that this was the dilemma of being human.

The Unlikely Pilgrimage of Harold Fry, Rachel Joyce © 2012

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Additional resources uncovered

28 Mar

Last week’s posting requesting your assistance in finding caregiver resources was fruitful and I thank you for your assistance.  Without editorializing on any one of the following links you may find them helpful.  I remain convinced that there is a gap in the men supporting women with breast cancer arena and will be further exploring opportunities to fill that gap with from a male perspective.  Stay tuned for developments on that front.

Regardless, here are some of the resources I found:

www.robcares.com

www.caregiving.com (I have started to share my Riding Shotgun blog with these fine folks – their perspective is broad in scope and may be of interest to you …. ooops, guess I just editorialized!)

http://heidi-strawser.com/strength-through-trials-as-a-caregiver

www.menagainstbreastcancer.org

http://chris-cancercommunity.blogspot.ca

www.ihadcancer.com

http://jamesslia.wordpress.com

www.caregivers4cancer.com

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