It is Sunday evening as I write this.  The kids are just put to bed.  Gabe produced a rather nice and surprisingly capable reading of ‘Goodnight iPad’ for a four-year old and Sam was most amused.  It has been a beautiful sun-filled day with harbingers of the summer to come.

And yet as I write it is with a deeply-rooted sense of unease.

Eighteen weeks ago tomorrow Kate’s chemo commenced.  Tomorrow, for the first time since January, we will not be making the trip to Credit Valley.  We both felt that this would be a moment of great rejoicing and renewal.  It is not.

About four weeks into Kate’s chemotherapy I had a most enjoyable (and in retrospect too infrequent) cup of joe with Bothsides.  She was most helpful in shedding light on some of the issues I was attempting to address in my shotgun role and at the time it seemed curious that she mentioned that tonight I would probably be feeling what I’m feeling.

That surprised me for it seemed more likely a time to unpack the ticker tape (hell, do they even make ticker tape anymore), call out the marching band and strike up some John Philip Sousa!  At that time I asked Alex if she was familiar with Stockholm Syndrome.  She politely claimed she was not but knowing her better now I’m sure it was just a technique intended to allow me to express some thoughts.  She’s like that!

I posited that someone undergoing the trauma of chemo might in fact find some degree of comfort in the ‘poisonous’ relationship as although it made one feel absolutely dreadful it was a relationship where some benefit might accrue from the hardship.  The regularity of the treatments and the knowledge that the patient is fighting tooth and nail might in fact provide some perverse but understandable comfort.

Consider the following.

Stockholm syndrome is “the phenomenon in which victims display compassion and even loyalty to their captors.  It was first widely recognized after the Swedish bank robbery that gave it its name.  For six days in August 1973, thieves Jan-Erik Olsson and Clark Olofsson held four Stockholm bank employees hostage at gunpoint in a vault.  When the victims were released, their reaction shocked the world: they hugged and kissed their captors, declaring their loyalty even as the kidnappers were carted off to jail….No widely accepted diagnostic criteria exist to identify Stockholm syndrome – also know as terror-bonding or traumatic bonding….”* (bolding by me)

So, when I read this piece recently the notion of terror and/or trauma bonding made a lot of sense.   In fact, Kate has more recently read about Dr. Marla Shapiro’s experience of the end of chemotherapy and in her book she explains feeling something similar.

At least while chemo is underway you can legitimately believe that the treatment is actively hammering away at your disease.  When the flow is interrupted though – what is happening?  Will it come back?  Has it just been hiding away in some dark corner awaiting the first hint of a Sousa march to come prancing back down the main street of your life?

Now, to be clear, neither of us would sign up for more chemo to test the theory.  It is our solemn pledge to never darken the door of a chemo ward again except to provide support for someone else.  (By the way Rachel, if you read this we’ll be thinking of you and Philip tomorrow.)  However, in my role as co-pilot and in trying to help others in my position just be aware that the reality of the last day of chemo will in all likelihood not live up to the celebratory expectations you had.  Oh hell, crack open some bubbly if you like or dish out some ice cream but in our experience we suggest you take this one step at a time and celebrate a number of small victories that can occur along the way.

Perhaps a little trip to Stockholm might be nice!

April 23, 2012 and the bells ring out

*TIME Magazine, L. Fitzpatrick, August 31, 2009

Just a very quick request to the community here – if you or someone you know is taking this trek while at the same time raising young children I would love to hear from you.  While we’ve met many great folks since this crap started last year we’re still struggling somewhat to find commonality in the reality of coping with all of the relevant challenges and ensuring that our 2- and 4-year old boys are provided all of the same nurturing care that we’d be providing (and maybe are providing) if fate hadn’t dealt this hand.

More to follow in a later post about some means to manage the guilt that comes along with this illness but for now consider this just a very quiet and simple request for help from our on-line friends.

Thanks.

There is a vulnerability that one chooses to accept when participating in communications efforts such as this blog.

A short while ago I removed three postings from my blog because for a moment it felt as though I was opening the kimono too broadly.  Upon reflection and reading some of my co-bloggers entries I realized that if we’re going to help each other we really do need to be transparent and honest.

Now, I’m not going to reveal all of the most intimate details of this trek – I have some notion of discretion – but moving forward I will embrace the same courage as those who have inspired me to participate.  Foremost among these is my beautiful wife who admittedly agonizes over my commentary but ultimately forgives my transgressions.  She has finally the patience of Job and that is a quality much required in partners of those of us with clinical depression;)

Also just a quick mention of two people we’ve met at Credit Valley – Sandra and Carole – both nurses of the year at CVH and well deserved from our experience.  It appears more clear as this trek continues that the most genuine empathizers in the medical oncology world are the nurses (no offence bothsides).  Bless both of you.  And, while you have been wonderful we will admit that as of April 23 – the final chemo treatment – we won’t miss seeing you every two weeks regardless of how wonderful you’ve been.  When that bell rings we’re are blowing the joint and with the collective karmic forces that have assisted us so far we will never return.

O.K.  I might drop off a flower or two from time to time but that’s it!

There is little cause for me to bitch but I will anyway.

Every second Sunday is the day before chemo and I am growing to loathe them.

The tension builds throughout the day and much of it revolves around watching my beautiful wife just begin to regain momentum after 10 days of feeling crap since the last treatment and realizing that she’s about to get whacked again.

So, last post I promised to try to be helpful and, unlike others whom I care for, did NOT break any bones this weekend (Sorry about that Dr. Alex – that is a major drag.) so here goes.

If, like me, you’re sensitive to what others are feeling then the osmosis of fear and loathing will come into play.  I’m no scientist (majored in medieval studies and Yorrick the Barber had no advice on this front) so cannot explain a process by which to inoculate yourself to this symptom.  What I can do is suggest a few things:

1. The word of the day might be sublimate (esp. in psychoanalytic theory) divert or modify (an instinctual impulse) into a culturally higher or socially more acceptable activity.  In other words, find a way to direct your angst in a positive direction.  Encourage your partner.  Buy some flowers.  Go out for lunch.  Help out in an unexpected way.  Find a way to give them some quality time on their own – if that is what you think might help.  I promise, I’m going to try all of this next time ’cause so far I suck at this.

2. Another word of the day might be ‘shut up’ (OK…two words).  You will be subjected to what seems unreasonable sensitivity and criticism.  However, you’re not about to get injected with poison almost sufficient to kill you nor are you about to experience a list of side effects longer than a good sized Dachshund.  So, suck it up and do your best impression of a highly-absorbent emotional sponge.  While it might be temporarily relieving to respond, it will only make you feel like an idiot when you’ve had time to reflect.  That’s what I’m doing right now and hence this posting which, if I was a Catholic would probably be done in the privacy of the confessional and I would have some hope of absolution.  I’m on my own though and when all is said and done, the object of your love is struggling to get up the courage to face another round of abuse to the system.

3. Here’s the third (fourth if you’re a stickler for detail) word of the day – laugh.  Now, you gotta pick your spots on this one, but trust me – nothing can diffuse most situation more rapidly than a little giggle – especially at your own expense.  I get plenty of opportunity to do this such as getting all het up about why Apple TV won’t hold all the movies it used to and what the hell is wrong with this technology etc….Yes, I did exactly that and it wasn’t ’til much later in the day that I recognized the absurdity of expending energy on such a completely stupid subject and one which I will never ever take the time to understand.

4. Finally, the one word that can get you through almost everything – love.  We’re never stronger than when we can fully embrace the complete abandon of love given freely and as often as possible.  Or when we acknowledge the legions of people around us who are channeling their support and love our way.  Or when we see the brilliant smiles of our children.  Or when your partner supervises your two-year old getting the cutest damn haircut since the Beatles first arose from the muck of Liverpool.

I love you Katie.

Would you like to read about what living with cancer resembles when the gloves come off?

Imagine for a moment that you exist in the shadow of a volcano.  Like Mount Etna it gets a little cranky from time to time and blows off some poisonous gas.  So long as you’re upwind you’re inoculated from the worst effects. These are the occurrences that you can chalk up to normal stress and frankly, most of you living cancer-free lives will have the occasional Etna-like day.

But hold on to your britches ‘cause this ride is about to get hot and bumpy.  You know it’s going to happen.  You can predict with even greater certainty than the world’s most renowned seismologist.  Vulcanologists have no more claim to an accurate predictive index than you do and yet, like a awe-struck mule you stand locked in place waiting for the moment when the entire top of the mountain comes off.

Let’s get all Wiki on this for a moment and you’ll begin to acknowledge the similarities:

A volcano is an opening from the Earth’s surface into pools of hot liquid rock (magma) beneath the Earth’s crust. The opening allows magma to expand and erupt, where it takes the form of lava, ash, cinders, or gas. Because the magma is under extreme pressure from the overlying crust, ejections of this material can expand explosively, causing an area of destruction several miles wide. Ejected ash, dust, and gas can persist in the atmosphere for weeks or months. Eruptions in or near the ocean can also generate tsunamis.

The Eruption

In a typical volcanic eruption, lava is forced up and out of chambers beneath the surface, sometimes creating a tall cone of rock and ash. If the ejection is energetic enough, “bombs” (large liquid globs of lava) can be thrown from the vent for miles through the air. Lava will flow from the eruption site and may cover a large area. “Pyroclastic clouds” are flows of superheated gas and rock (called tephra) that can race from a volcano at speeds up to 700 km/hr (450 mph), usually steered down slopes by gravity. These can destroy almost everything in their path, heat the air to 1000°C (1830°F), and carry noxious, deadly gases.

OK.  You with me so far?

You’re now coming to understand a little bit more about how this fight wears and tears you down.  You’re now getting a glimpse, with terrifying transparency, of how a most unwelcome disease sets off rumblings within your core.  How, even  with all of the best support and being forearmed with knowledge, you remain frozen to the spot as the bombs drop all around you.

Curiously, it doesn’t take something cataclysmic to launch the summit.  More often it is the culmination of little indignities, normally brushed off cynical commentary, the impact a complete stranger introduces, and a simple, if messy, domestic mishap.

It’s at this point that pretty much everyone at the party says something inappropriate and emotions kept in check for days just let rip.

And, it is this aspect of this goddamn disease that really tears me up.

I end up behaving “like a baby”.

I launch into diatribes best left at the roadside along with the rest of the day’s jetsam.

I become immune to all notions of decency that even the most loathsome despot would embrace.

What to do?  What to do?

If you’ve read my profile, you’ll know that I acknowledged living with clinical depression.  Here’s where things get a little more complicated for the caregiver with depression:  depression is often expressed as hostility, rejection, and irritability.

Despite all of the advances in the recognition of depression as a real illness, there are still people wandering this earth who truly believe that we should just be able to “snap out of it”, “buck up”, and “be strong”.  After all, what we’re afflicted with won’t kill us.

Or will it?

Did you know that an enormously high percentage of caregivers develop depression?  I didn’t.  Of course, I already had it so in some respects I can consider myself lucky that this wasn’t something new.

Here’s what The Family Caregiver Alliance (www.caregiver.org) writes about it:

Yes.  A short while ago I wrote in this blog a few tips about how to respond to the quite natural feelings of anger that can arise – that WILL arise.

I left one out.

Acknowledge that the task you’ve been given is a real and genuine bitch.  And, if you’re already someone with a vulnerability – in my case, depression – do whatever you can to gird your loins for the rumblings at the earth’s core.

Seek help.  Talk to friends.  Don’t try to handle it all by yourself and know that the one whom you love most on earth will not always be the person from whom you can expect compassionate insight.  After all, they are the one whose veins are injected with poison and the last thing we should do is compound the pain with what can be seen as self-indulgent lashing out.

Remember though, that we have to look after ourselves too.  On days like this I am of absolutely no use to Kate.  I am more of a detriment than anything else so I must find ways to shake off the black dog or at the very least send him chasing after a stick while leaving me to enjoy the park for even a short while.

That lava flow needn’t be seen as ultimately destructive.  After all, Hawaii was created and is still being created by volcanic eruption and last time I was in Maui it seemed like a damn nice place.

Is there a more pacific mammalian metaphor than the lamb?

Literature is replete with poetry and prose extolling the peaceful virtues of the lamb.  It is viewed in most cultures as a symbol of gentleness, softness and purely innocent charm.

And yet danger lurks around every bale of straw.  Those soft dewy eyes hide a terrible danger.

OK.  That’s maybe a bit over the top but here’s my point – for anyone undergoing chemotherapy and its unrelenting assault on the immune system even this lovely little creature takes on a hue of danger.

During March break, we had the very great good fortune to spend a marvellous three days at some friends’ farm in Markdale, Ontario.  The weather was unusual – 25 degrees C – and stupendously calm and stunningly sunny.  Our boys have never had a better time as they were able to spend entire days outside exploring the surrounding forest trails, spotting snakes, watching Daddy catch and kiss a frog to see if it would turn into a ‘pransome hince’ (it didn’t), and finding evidence of the local coyote population in the pile of wild turkey feathers that Grandpa fashioned into stabilizers for Gabriel’s homemade arrows.  Katie was at her peak enjoying that very brief respite that a two-week chemo cycle offers and Nana prepared some favourite meals.  The boys slept peacefully and quietly and through the night although it was their first time sleeping in the same room and for Samuel his first extended period away from home.

All in all this was an idyllic, bucolic experience and one for which we were most grateful.

But all the while danger lurked.  One of our planned activities was a visit to the Hayglen farm in Singhampton.  It is spring after all and what happens on a sheep farm in the spring?  Lambs.  That’s what.  Lots and lots of fluffy little bouncers and one very proud ram, Lloyd was his name, who fathered lots of twins and lots of tired but somehow happy looking ewes.

Our hosts were most welcoming.  They allowed the boys free run and after the normal initial reticence, Gabe and Sam, took to the lambs like ducks to water.  All the while though their Mom was very quietly freaking out.  She gave no hint to the boys.  She’s really great like that but all she could really see in the environment was swarms of invisible germs encircling her like the lambs on a teat!

Before we began this horrid trek through the cancer fields we neither of us would have for a second thought of avoiding an opportunity to cuddle with a wee lamb, to feel the warmth of 2-day old wool against our cheeks, to see our children wide-eyed in wonderment as the little beasts gamboled about the barn.  But that’s what happens when your body becomes a war zone.  The most innocent activity imaginable becomes a seething pit of worry.

The outcome of the experience though was this – Katie showed bravery in the face of a lamb assault.  Sounds silly doesn’t it?  It is not.  She sacrificed her own feeling of wellness and well-being to ensure that her boys learned about the wonders of the world of new-born critters and there’s a lovely harmony in the entire circle of life and caring showed there.

My learning – danger can lurk where least expected but courage and love for others can help everyone overcome the hesitancy that can further remove us from the normal joys of daily life.

Thanks Kate for giving the boys a great few days at the farm – that includes this much larger and older boy as well.  You are such a great Mommy and wife.

Received a very nice e-mail today from a friend telling me how my blogs were providing her some assistance.

The other shoe dropped though when she advised that she’s taken on the co-pilot role since her partner was diagnosed around Christmas time.

I will recommend that she join this community as I’ve found it to be the most helpful to me.  It is helpful because of people such as bothsides, bumpyboobs, lovely-lady-lumps, and others who aren’t the least bit frightened to share the ups and downs of being dealt such a crap hand.  Regardless of how supported we are with immediate family there are moments when all of us feel abandoned.  When visions of Tom Hanks getting up close and personal with Wilson the volleyball begin to seem all too real.

So, Diana, you are not alone.  I’ll be there for you and if you choose I can highly recommend the great new family I’ve found on this site and in these blogs.

We have experienced many surprises on this trek.  Unfortunately the vast preponderance are akin to monsters hiding in the closet or ghosts emerging from beneath the bed.  On the other hand though have been a few moments that have shone forth like a great beacon of hope.

Tonight we had a little brilliance come into our lives.

At 6:00 p.m. there came a knock on the door.  Racing Sam and Gabe to answer it, we opened it to find our former neighbours, the Dougalls.  Well, 3/5ths of them anyway – 1/2 if you count the pooch.

The Dougalls formerly lived across the street from us on William Street and along with the Tomlinsons, with whom we shared our semi, we had very many great moments celebrating the day-to-day wins and losses by joining each other on the porch.  The porch parties, always spontaneous, were joy-filled occasions admittedly often fuelled by Dave Dougall’s excellent cellar, Keith Tomlinson’s carefully selected offerings,  Karen T’s gourmet snacks, and Caroline D’s special treats.  Kate and I pretty much just showed up!

Anyway, we formed some lasting relationships on our porches and for the past few years we have done as well as we could to keep the fires of friendship burning brightly.

Well, tonight young Cal Dougall lit the blaze to record intensity.  Cal just celebrated his 9th birthday.  He’s a very handsome young man and someone that my son Gabriel pretty much idolizes (Cal, to his credit, is very patient with his four-year-old shadow).  What we didn’t fully realize was what a very fine young fellow Cal is.

Rather than gather up a horde of new toys at his birthday party, Cal asked his friends to donate to Kate’s Run for the Cure team.  Tonight, he handed over cash and commitments of $250.00.  At the same time his Mom shared the following note with us:

Dear Don, Kate, Gabe and Sam,

It was Cal’s 9th birthday.  We hope some day you will be as old as him boys, and enjoy your days celebrating with your family!  We thought by donating to Don’s run it in turn will help make this happen.  (Also to inspire Don.) So cal, for his party, asked his mates to donate as he has lots and would like to help the ’cause’.  So on behalf of Cal, his mates and the Dougall clan, we wish you love, memories, inspiration and energy always. XX

Cal, you rock.  As Gabriel said, what you have done is “wicked awesome”.  We may never be able to thank you sufficiently but know this – you are indeed a fine young man.

A tree is known by its fruit; a man by his deeds. A good deed is never lost; he who sows courtesy reaps friendship, and he who plants kindness gathers love.

St. Basil

St. Patrick’s day is renowned for raucous celebrations, mad-cap parades and great craic. On occasion, I’ve enjoyed it myself (once in Dublin and another time in Belfast but since both of those resulted in missed flights back to Leeds I don’t like to recall them too often.)

What I do recall too often though is that on this day in 1967 my mother, Eleanor, died after spending six months at Toronto General Hospital in her ultimately losing quest to beat bowel cancer.  I was 14 and ever since have felt a little chill every time I drove past TGH.

I take that drive quite often now, or did last fall when we were spending a lot of time with Kate’s team at Princess Margaret.  It is now getting to the point where I don’t even much like driving up University Avenue.

However, now that I have become familiar, as an adult, with cancer treatment and as I’ve looked out from PMH across the street to TGH I wonder if cancer treatment advancements could have saved my first mom, Eleanor.  What a difference that would have made to my sister and me.  And, for my father, who travelled every single day from our home in Hespeler to Toronto to be with her, I now have greater understanding and empathy than ever before.  I am just fortunate that my caregiving doesn’t require a 120 mile/day round trip.

It is still difficult for me to dwell too long on telling tales of my 14th year and how the lingering impact of my mom’s departure influence me ’til today.

In my dark moments, of which there are mercifully few, I think of my own boys, Gabriel and Samuel, and can’t envision for them a life that does not involve the every day hugs and laughs and scoldings and treats and advice that come in their interaction with Kate.  In the brighter moments I am so very grateful that medicine has come so far and that on some level the sacrifice Eleanor made in the early to mid ’60s somehow benefit my beautiful wife.  That is the golden thread through all of this and the one anchor that keeps me loving Eleanor (I should mention that she was actually my second mom as I was adopted as an infant so yes, I am one of the chosen people!) and feeling so supported by people past and present.

It also reinforces for me my commitment to make this blog somehow useful and to let other 14-year old boys know that even if you experience the depths of adolescent hell, there is hope eternal and a great life to be had as you move forward.  If you’re lucky to be embraced by loving family and friends you can let some of that anger go.  That energy you expended giving an extended bollicking to the snow drift present at graveside can be turned to a useful purpose and that out of darkness light will emerge.

Yes, every year on St. Patrick’s day I wonder.

I loved you Eleanor.  You helped me grow to the point where today I can extend to my wife and my sons the love you showed to me.

Bless you for that always.

Recently wrote to a new-found friend that while I could count on the fingers of one hand using a very few digits the number of good things that have happened since Katie’s diagnosis last October – she was one.

I met Alex through this blog and last week we met in person.  That’s a mutual leap of faith right there but here’s the cool thing about the blogosphere – if the blogger is honest and open in their blogging you get a pretty good sense of what they’re all about.  Frankly, how one expresses oneself through the written word is often a pretty good indication of personality.

So, where was I?

While I have been somewhat extroverted in exploring the support universe during Katie’s cancer trek, it has been a challenge to find completely relevant and insightful resources.  To that end, I recently was loaned a book (with the best of intentions I know) entitled ‘Breast Cancer Husband’. While I hate to be critical of anyone making any effort at all to shed light on the plight of the co-pilot I found this book to be alarmingly Neanderthal.  It offered such profound insights as “sometimes your partner might just need a hug.  Offer them freely.”

Well doh!  Are most men so completely bereft of compassion that we need to be directed to be supportive?  Further, it offered, “you may want to attend chemotherapy sessions with your partner.”  Gee, ya think so?

However, it is too easy to wallow about in criticism when I am confident that most people writing of the caregiver position are well intended.  And, if I’m gonna take shots at someone who went to the considerable effort to get their thoughts published with all the best intentions maybe I should be a little more diligent in recording and sharing some of my learning from the past several months.

That’s what I’m going to do.  I am making a commitment here to record more of my learning and share it with you.  Then, when I make a Neanderthal remark you are most welcome to call me on it and help me in my quest for continuous learning.

Is that a deal?

What was the small mercy?  Alex, shared some incredibly useful insight with me and she’s the first person with whom my beautiful wife is striking up a relationship and that has large implications for progressing positively.