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Cancer Progression and BNL's "Get Back Up."

5/21/2022

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So it comes.  Bad news.
 
My last scan indicated progression despite chemotherapy.  
 
Chemotherapies are like antibiotics.  Eventually, the body develops a resistance to them, and they no longer work to control the tumour.  Patients develop “resistance mutations.”  If one has heterogeneous tumours (some respond, some don’t), eventually the resistant tumour “takes over” the responsive ones, making chemo completely ineffective.  
 
When this happens, sometimes patients can switch to another chemotherapy.  Unfortunately, in my case, I have no other authorized options.  
 
This leaves surgery and radiation as my only hope of local control.  Referrals are in for those opinions, but with the healthcare system still in damage-control it may be many weeks or months before I learn anything.  In previous discussions, the surgeon and I agreed that the ultimate surgery (total pelvic exenteration, or complete removal of EVERY organ in the pelvis) is too morbid for me at my age.  So unless they can propose something else, I expect the surgery road is also a dead end.
 
That leaves radiation.  They have been having good success with some women getting radiation to the pelvic sidewall using very targeted beams and special technologies.  I have a delicate surgical repair in that area, though, and it could fall apart if radiated.  So I need to learn if they can target the radiation precisely, or not.   If they cannot offer the targeted therapy (called SBRT) in NS, I may have to go back to Sunnybrook in Toronto to find an expert who can do it.
 
As super long shot: my last tumour was tested and found to have a mutation often found in breast and prostate cancer. There is an oral chemo pill that is for those disease sites I could try.  In modern cancer science, oncologist want to treat the underlying mutations regardless of the body part involved, but currently all government funding is organized by the body part labels.  So that drug is outside the formulary for colorectal cancer.  Access would be another huge fight, and even if granted I would have to pay out of pocket for it.  (Thank God I won that medical malpractice lawsuit against my bungling diagnostic doctors that helps me cover my prodigious costs of care).
 
Meanwhile, I continue with my advocacy as well as I can.  I am the patient representative on the planning of the National Healthcare Leaders Conference in June.  I am serving on patient panels to promote advances in colorectal cancer, such as lowering the screening age from 50 to 45.  
 
And finally, I am raising money as always for Relay for Life, to support the Canadian Cancer Society.  CCS has really suffered under the pandemic.  We need to build them back up to restore their support and research programs.  I stayed in the Lodge That Gives for 2 months in the past, and may need it again if I get radiation. Please consider donating to my Relay.  Click here to go to my fundraising page, and you will get an automatic receipt online.  For those who donate $100 or more, I will light a luminary to honour your loved one.  
 
Scottish poet Robbie Burns wrote: “The best laid schemes o' mice an' men / Gang aft a-gley.”   We all know this: COVID has made many a travel go awry.  Andrew and I had hoped to go on a trailer trip to Newfoundland this August.  Maybe that can happen, maybe not.  We would really love it if we could, as it would be the crown on our previous tour of all Canadian provinces and a territory. 
 
Today’s song is “Get Back Up” by the clever Canadian group Barenaked Ladies, from their 2015 album Silverball.  It is an extended boxing metaphor that resonates with me as I pivot to face my new treatment challenges.  Truly, I am “on the ropes”.  But what are the options?  Hit the canvas?  The song exhorts us to keep standing.  Which is what I will try to do.
 
 
I'm a little bit worse for wear
Got a little bit more grey hair
I'm not gonna be the next big thing, but I'm getting fitted for a new brass ring
I been dunked, I've been kicked around
Now I'm ready for the big rebound
I know you can't win them all, but I'm swingin' like Pitt gettin' hits in Moneyball
 
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
 
Not everything is sink or swim
You can’t fly if the air’s too thin
The best part of the ride is the freefall
Better keep your arms and legs in the vehicle
Standing eight and I'm on the ropes
Knees givin' but I won’t lose hope
I‘m not the second coming of Muhammad Ali, but can I get a "WOOT" for the boxing imagery?
 
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
 
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
 
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Everybody's up on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
 
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
 
 
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COVID risk, cancer treatment, and Joni Mitchell's "Both Sides Now."

3/23/2022

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​I have not had COVID19, but it still has harmed me considerably.
 
In July I started a three-month chemotherapy break.  Because of COVID19-related resource deficits, that turned into six months.  My surgeon explained that OR nurses had been seconded to COVID response, delaying all surgeries in the province.  In October, I learned I needed a very minor 15-minute surgical procedure requiring only a few superficial sutures.  I was only able to get that done in December just before Christmas, and thus was only able to access chemotherapy in January.  Scans revealed that my tumour doubled in size during that undue wait.
 
I am now in the thick of chemo treatments, the same recipe I had before (Irinotecan, 5FU, Panitumumab).  The associated stigmata vary each cycle, with the skin rashes and fatigue the most prominent issues.  As harsh as it is, it is a better situation than not being in treatment with a progressing cancer.  At this time, my pain is reasonably controlled by the medications I am on (CBD oil, nortriptyline).  So far, no opiates – I won’t move to them until I absolutely must.  I will not know whether the treatment is working to shrink the tumour until the end of May.
 
Omicron risk has us living a lockdown lifestyle.  We see virtually no one.  I don’t go shopping. Andrew, ever the trooper, is our forager.  Apart from medical appointments, I stay home.  This is not as grim as it sounds, as I try to prioritize fitness every day.  Although many scorn us for being so careful, I consider it my duty to protect myself and my fellow chemotherapy patients and the staff that care for them. Even if I had mild symptoms, a COVID19 infection would jeopardize my treatment.  But worse, unknowing transmission would jeopardize the treatment and indeed the lives of those getting treatment near me. The lady in the chemo chair next to me is over 80 years old. 
 
I continue to be active in advocacy efforts.  My treatment delay experiences have covered in a recent story in Chatelaine magazine, an Amgen video, and a Cancer U Thrivers podcast.  My fundraising was profiled by Canadian Cancer Society, and my book The Cancer Olympics was the subject of an  Ask the Author Cancer U interview on YouTube.  I remain active with Patients for Patient Safety Canada, particularly in a recent initiative to make the post-medical-harm process more humane for both harmed patients and providers.  As well, I am a new member to the regulatory board for my profession of Psychology.  In the later role, I am heading up a committee aimed at making doctoral-level training the entry-to-practice standard for Nova Scotia, as it is in all other provinces.  These projects are time-consuming but also somewhat thrilling.  COVID19 has changed the landscape, making the time ripe for change in healthcare.
 
Today’s song is “Both Sides Now” by the iconic Joni Mitchell from her 1969 album Clouds.  She has been in the news lately, both for her 2021 Lifetime Achievement Award, as well as her brave choice to withdraw her canon from Spotify to protest Joe Rogan’s COVID19 disinformation.  She had polio as a child, and therefore is committed to vaccines. Joni is considered one of the 100 greatest musical artists of all time by Rolling Stone magazine, and her perfectly-crafted “Both Sides Now” is considered among the best 500 songs of all time.  A phenomenal songwriter, Joni was also gifted singer with a 5-octave vocal range.  Her preternatural maturity is shown by the fact that she wrote this poignant cynicism-to-hope song when she was only 20 years old.   I choose it today because it reflects the world-weariness that many of us feel in this time of upheaval in global health and politics, as well as its whisper of wise acceptance “in living every day.”
 
Rows and floes of angel hair
And ice cream castles in the air
And feather canyons everywhere
I've looked at clouds that way

But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way

I've looked at clouds from both sides now
From up and down, and still somehow
It's cloud illusions I recall
I really don't know clouds at all

Moons and Junes and Ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I've looked at love that way

But now it's just another show
You leave 'em laughing when you go
And if you care, don't let them know
Don't give yourself away

I've looked at love from both sides now
From give and take, and still somehow
It's love's illusions I recall
I really don't know love at all

Tears and fears and feeling proud
To say "I love you" right out loud
Dreams and schemes and circus crowds
I've looked at life that way

But now old friends are acting strange
They shake their heads, they say I've changed
Well something's lost, but something's gained
In living every day

I've looked at life from both sides now
From win and lose, and still somehow
It's life's illusions I recall
I really don't know life at all

I've looked at life from both sides now
From up and down, and still somehow
It's life's illusions I recall
I really don't know life at all

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Chemotherapy delays and Genesis' "Undertow."

12/12/2021

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Season’s greetings to all.  I am wishing you good food.  And fun times.  And colourful lights.  And a Delta-and-Omicron-free frolic.  And. And. And…
 
My chemotherapy break soon comes to an end.  I will commence it again starting 11 January 2022.  This break was supposed to be only three months, but various delays caused it to be twice that long.  Although an MRI scan suggested no change at all in my disease, my cancer blood markers rose.  That lead to a more sensitive PET-CT scan, which indeed revealed some progression in the pelvis.  Thankfully, nothing yet seen in my lungs, liver, bone, or brain.
 
Before I could start chemotherapy, I needed a minor surgical procedure (otherwise the wound would not heal).  But COVID19 factors have meant operating rooms and minor procedures are backlogged.  I had to wait 2 months beyond the date I should have started chemo before I could get it done.  Then I need least two weeks recovery, a timeline that lands in Christmas week.  Because chemo units are on skeleton staffing during the holiday period, I must wait an additional three weeks to access a chemotherapy chair.  So I must wait, even though my cancer does not.  But there is a silver lining: I will be able to spend Christmas without the unlovely aspects of chemotherapy.
 
It is remarkable how much better one feels during a chemotherapy break.  The fatigue recedes, hair and eyebrows grow back, and skin returns to normal.  Food tastes better.  Nutritional status and blood parameters bounce back.  Those who saw me when I was on chemo previously are surprised by the improvement in my energy and appearance without it.  Most importantly, during a break, I no longer had to spend three days every two weeks in an untouchable state.  
 
All that health progress will be sacrificed when I start chemotherapy again.  Nevertheless, I welcome resuming it.  After all, I have no other treatment path besides chemo-for-life.  Recently I attended a webinar in which an expert oncologist said that the survival of those who take chemo breaks is the same as those who do not, and because the breaks are such a boon to general health, it is worth it to experience them even at the cost of some disease progression. 
 
I am chuffed to announce that I was the winning frontrunner in an election to join the provincial regulatory board for my profession of psychology, leading the pack with 166 of 249 votes cast (66%).   Serving on the Nova Scotia Board of Examiners in Psychology is absorbing and challenging work.  It allows me to keep my hand in professional matters and to work towards meaningful improvement in psychology practice standards.  So far, it has been the perfect segue away from working full time. 
 
Genesis is touring now.  I am an avid fan of this supergroup.  Today’s song is “Undertow,” from their 1979 album Then There Were Three…. I choose it for several reasons.  It seems appropriate for Christmastime with its images of snow and celebration.  It opens with images of comfort, intruded upon by thoughts of the cold homeless.  Then it pivots.  The song poses the question: If this were the last day of your life, what do you think you would do?  Although a tempting complacency flows beneath the surface of our pleasures, we must stop and reflect. There is a force - an undertow - that compels us to face the serious and emotionally overwhelming question of our own death.  But by speaking of the defiance of love in the face of that mortality, it nevertheless yields a Christmas message: love now, because life is short.
 
The curtains are drawn.
Now the fire warms the room. 
Meanwhile, outside
wind from the northeast chills the air.
It will soon be snowing out there.
 
And some there are
cold, they prepare for a sleepless night.
Maybe this will be their last fight.
 
But we're safe in each other's embrace.
All fears go as I look on your face.
 
Better think awhile
or I may never think again.

If this were the last day of your life, my friend,
tell me, what do you think you would do then?
 
Stand up to the blow that fate has struck upon you.
Make the most of all you still have coming to you.
Lay down on the ground and let the tears run from you.
Crying to the grass and trees and heaven finally on your knees.
 
Let me live again, let life come find me wanting.
Spring must strike again against the shield of winter.
Let me feel once more the arms of love surround me,
telling me the danger's past, I need not fear the icy blast again.
 
Laughter, music, and perfume linger here
And there, and there
wine flows from flask to glass and mouth
as it soothes, confusing our doubts.
And soon we feel
Why do a single thing today?
There's tomorrow sure as I'm here.
 
So the days they turn into years.
And still no tomorrow appears.
 
Better think awhile
or I may never think again.

If this were the last day of your life, my friend
tell me, what do you think you would do then?
 
Stand up to the blow that fate has struck upon you.
Make the most of all you still have coming to you.
Lay down on the ground and let the tears run from you.
Crying to the grass and trees and heaven finally on your knees.
 
Let me live again, let life come find me wanting.
Spring must strike again against the shield of winter.
Let me feel once more the arms of love surround me,
telling me the danger's past, I need not fear the icy blast again.
 

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Grieving Roger Hamilton and Seals & Crofts' "Wayland the Rabbit."

10/10/2021

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My beloved former family doctor Roger Hamilton has died of cancer.  
 
He was diagnosed at the same time my own disease recurred – devastating for me, and when I started this blog in earnest.  “Paint It Black” was my song then.  I learned later that just the day before his cancer surgery, he was advocating with resistant specialists on my behalf – one of his last acts as a physician before his disease forced him to leave medicine.  How that touches me.
 
I had worked with Roger for over a decade in my role as a child psychologist, so I already knew how dedicated, responsive, and patient-centred he was.  I also knew him as a neighbour – as a loving husband and devoted family man, as he lived only one door down from me.  
 
One of the most delightful things about Roger was how he spoke.  He had such a had a gentle voice, and when he spoke it was often filled with creative allusions.  Talking to him was like listening to a jazz artist scat singing, with brilliant flashes that gave glimpses into his marvellous mind.  
 
I have so many memories of him.  As described in The Cancer Olympics, I had served on a government committee that tried to standardize the referral process for family doctors when they suspect colorectal cancer.  Roger had been actively advocating for improved practice in this area himself for years.  I remember him calling me into his office one day, to show me on his screen the new EMR referral form our committee had developed.  He enthusiastically told me that he had referred two patients with that very form in the past week.  I wept with joy to see it, and Roger had tears in his eyes too.
 
One of my tenderest memories was of a time when we met by chance at our local post office.  He was just finishing his first bout of chemotherapy, and I was just starting mine.  We commiserated about how horrible chemo makes everything taste.  I turned to my post box, my back to him.  As he passed me on his way out the door, he briefly rested his hand between my shoulder blades.  Just a touch, but in it he communicated all his compassion, all his empathy, and his full understanding of our mutual suffering.  
 
In another poignant memory, I was with Roger and his cherished wife Wendy-Lee.  We were in their backyard sharing a cheese plate with a friend.  The friend asked him if he would go back to being a doctor once his treatments were over.  Roger replied wistfully, “I just hope to be Roger when my treatments are over.”  I realized his fear with a pang of recognition – that cancer will destroy our core identity just as it strips away our outward roles. 
 
In Roger’s honour, my song choice is Seals and Crofts’ gentle “Wayland the Rabbit,” from their 1975 album I’ll Play for You.  Better known for their big hits “Summer Breeze” and “Diamond Girl,” that duo wrote many more thoughtful songs.  This one was written by Seals for his actual father, whose name was actually Wayland.  This ballad shares images of an abundant Paradise.  It probes the mystery of suffering and death.  It conveys warmth for a sorrowful father.  (I listened to this song often after my mother died and my father was grieving her).  But the lyric that moves me most is the line, “I love you ‘cause you’re strong/ and I love you ‘cause you’re weak.”  When I think about Roger, I think about loving all of him - the strong wise gentle doctor and also the afflicted debilitated cancer patient.  How many of you have loved a person disabled by age, disease, or an accident of birth?   Cancer may render us into weakened shadows of our former selves – but we love and are loved regardless.  And Roger Hamilton was greatly loved.
 
As in the song, I wish Roger all the bounty of earth and Heaven.
 
Oh my Wayland,
there’s deer in the forest
and rivers are flowing
just for you.
 
Oh my father,
look down through the mountains and valleys 
the grain's in the silo.
All for you.
 
One fine morning, 
as Dad was walking, 
just to see what he could see,
he spied a little white rabbit. 
He was frozen as solid as he could be.
And Dad cried, 
as he knelt down beside him. 
He asked God, "How could you be so cruel?"
And his heart broke for the little white rabbit.
“But you see that the owl
Would never have been so gentle,
And God is so kind."
 
I love Wayland 'cause he's strong.
And I love him 'cause he's weak.
And the rabbit is running within him.
 
Oh my Wayland, 
the children are waiting 
and berries are ripe down below the hill.
Oh my father, 
the shadows of nighttime can't touch you.
Immortal, go quickly, 
be thankful the water is cool.
Drink your fill.
 
Today, as I walked 'long beside him,
I said, "Dad why do you look so sad?"
He turned, as he stood by the doorway.
He said, "Things are not like they used to be."
I smiled, as if I could teach him. 
I said, "Dad, it's mercy in disguise.
Once you told me of a little white rabbit, and 
you said that the owl would never have been so gentle,
and God’s been so kind."
 
And I love you 'cause you're strong. 
And I love you 'cause you're weak.
And the rabbit is running within me.
 
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Retirement, cancer, and Supertramp's "Goodbye Stranger."

7/10/2021

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Despite many cancer derailments, I managed to achieve something recently: I was able to retire on my natural retirement date, after 30 plus years in public health and education.  When I was first diagnosed 11 years ago I never thought I would live to see that day.  Even at this time last year, I was unsure I would make it.
 
Another aspect of this this retirement fills me with unchristian glee and satisfaction.  The Cancer Olympics described the College discipline meted out to Doctors One, Two, Three, and Four for their diagnostic negligence. When the CMPA settled with me in my concurrent malpractice action against the doctors, they acknowledged that the care I received was indefensible.  It took them seven years to admit it. They could not find any expert anywhere in the world able to justify any aspect of it.  In contrast, our five experts as well as the College of Physicians and Surgeons pointed out foundational practice flaws in all four.  Dr. One was a locum who did not believe she was responsible for the tests she herself ordered in that role.  Dr. Two (famous for scorning patients’ descriptions of their symptoms) wrote egregiously lightweight referral letters that left out vital information.  She also failed to communicate that she was quitting family medicine to become a hospitalist.  Dr. Three ignored positive cancer screening tests, taking no action at all over mine because “he forgot.”  General surgeon Dr. Four had her outpatient surgical triage done by her high-school-educated secretary instead of herself.  The theme underlying all those errors is a grotesque avoidance of responsibility.  Their grievously flawed approach to clinical work jeopardized far more patients than just me – I will be eternally glad that I called them out for their deep-rooted and contemptable conduct.
 
I experienced considerable income loss due to my cancer, and the CMPA was obliged to replace some of that in damages.  They tried to limit my settlement amount by saying I would be dead soon and therefore did not need the money.  If I died before retirement, my family would only get 60% of my pension.  However, living beyond retirement has allowed me to allocate 100% of my pension to my spouse Andrew when I die.  So by continuing to live and work against expectations, I was able to earn money in addition to the settlement amount, thereby frustrating the CMPA’s plan to see us suffer.  Heh Heh Heh.
 
One of the hardest aspects of cancer is that it took me away from the work and the people that I loved.  I feel cheated that I was unable to help those struggling through the pandemic.  I lost my chance to help schools cope, not to mention my private patients.  Yet I feel so grateful for the marvellous people I worked with over the decades, particularly in schools – it was an honour to be colleagues with those who commit to and cherish children and youth.  Their example of dedicated service - hard work driven by values, caring, and sheer grit – will inspire me always.   
 
Given my limited life span, my retirement has few goals.  I hope to continue with patient advocacy.  I spoke virtually at a BC health conference two months ago.  The CEO of the BC Health Authority was so shaken by my story that he invited me to speak to the provincial health board.  Zoom makes advocacy easier! 
 
My other modest goal this summer is to train my rescue cat to go camping with us in our little trailer.  So far so good. He likes being carried in a backpack (as per the photo) but is not so happy about the car or the leash.  I hope to have a chemo break at the end of July for 8 weeks or so, to implement my crazy kitty schemes. 
 
Today’s song is “Goodbye Stranger” from Supertramp’s 1979 iconic album Breakfast in America.  It was a big hit in my final year of High School (another big transition!).  Although the actual song is about an absconding womanizer, I choose it today because its snappy tune as well as its many retirement-related themes: moving on, gladness to have met wonderful people, and its no-regrets message.  The final guitar solo at the end of this song is one of the most famous in music history.
 
It was early morning yesterday
I was up before the dawn
And I really have enjoyed my stay
But I must be moving on
 
Like a king without a castle
Like a queen without a throne
I'm an early morning lover
And I must be moving on
 
Now I believe in what you say
Is the undisputed truth
But I have to have things my own way
To keep me in my youth
 
Like a ship without an anchor
Like a slave without a chain
Just the thought of those sweet ladies
Sends a shiver through my veins
 
And I will go on shining
Shining like brand new
I'll never look behind me
My troubles will be few
 
Goodbye stranger it's been nice
Hope you find your paradise
Tried to see your point of view
Hope your dreams will all come true
 
Goodbye Mary, goodbye Jane
Will we ever meet again?
Feel no sorrow, feel no shame
Come tomorrow, feel no pain
 
Sweet devotion (Goodbye Mary)
It's not for me (Goodbye Jane)
Just give me motion (Will we ever)
To set me free (Meet again)
In the land and the ocean (Feel no sorrow)
Far away (Feel no shame)
It's the life I've chosen (Come tomorrow)
Every day (Feel no pain)
So goodbye Mary (Goodbye, Mary)
So goodbye Jane (Goodbye, Jane)
Will we ever (Will we ever)
Meet again? (Meet again)
 
Now some they do and some they don't
And some you just can't tell
And some they will and some they won't
With some it's just as well
 
You can laugh at my behaviour
And that'll never bother me
Say the devil is my saviour
But I don't pay no heed
And I will go on shining
Shining like brand new
I'll never look behind me
My troubles will be few
 
Goodbye stranger, it's been nice
Hope you find your paradise
Tried to see your point of view
Hope your dreams will all come true
 
Goodbye Mary, goodbye Jane
Will we ever meet again?
Feel no sorrow, feel no shame
Come tomorrow, feel no pain
 
Sweet devotion (Goodbye, Mary)
It's not for me (Goodbye, Jane)
Just give me motion (Will we ever)
To set me free (Meet again)
In the land and the ocean (Feel no sorrow)
Far away (Feel no shame)
It's the life I've chosen (Come tomorrow)
Every day (Feel no pain)
So now I'm leaving (Goodbye, Mary)
Got to go (Goodbye, Jane)
Hit the road (Will we ever)
I'll say it once again (Meet again)
Oh, yes, I'm leaving (Feel so sorrow)
Got to go (Feel no shame)
Got to go (Come tomorrow)
I'm sorry, I must dash (Feel no pain)
So goodbye Mary (Goodbye, Mary)
So goodbye Jane (Goodbye, Jane)
Will we ever (Will we ever)
Meet again? (Meet again)
 
Go and believe it
I've got to go
 
 
 
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Relay for Life and The Pretenders' "Back on the Chain Gang."

5/29/2021

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It is that time again.
 
Canadian Cancer Society's Relay for Life 2021 time.
 
This year RFL is online again.  The virtual ceremony went quite well last year.  To donate to my Relay, click here.
 
Recently, I had my 11-year cancerversary.  Can you believe it has been an entire decade since the events of The Cancer Olympics?  Since those days of our advocacy, around 100 Nova Scotians a year have access to FOLFOX chemotherapy as their best chance at cure.  Think of it: over 1100 people possibly saved due to all our work getting that drug added to the provincial formulary.
 
It is very uncommon to live 11 years with what proved to be stage IV colorectal cancer.  (Average life expectancy is only two years).  So I continue to press on with whatever I can do to support patients and families.  For example, this week I am presenting as a panelist at the National Health Leadership Conference about improving error and apology practice in the aftermath of serious preventable medical harm.  After a misread CT took away the last of my life chances, I tried to improve radiology practice but could not make a dent.  However, I was able to argue for improved error and apology training in the NSHA, and they built me into a new teaching video on the subject.
 
I am in the final weeks of my working life.  I retire from the Annapolis Valley Regional Centre for Education on 30 June.  Many considered me crazy for returning to full time work in March after my January surgery.  As strange as it may be, I really wanted to have one transition in my life to happen naturally, not torn away from me by cancer.  To me it is an achievement, a little smugness I hug to myself – I get to leave on my own terms.
 
Today’s song is dedicated to my friend Lila Hope-Simpson, who died of stage IV breast cancer last month.  Her cancer recurred after 10 years remission.  How can I describe her?  She was a cherished leader and visionary in childcare in our region, as well as an accomplished author.  The most superlative review of The Cancer Olympics, written for the Halifax Chronicle Herald, was hers.  Lila and I would discuss our attitude to our impending deaths.  She was remarkably clear-eyed about it, seeing past the fear to the solace of being with family at the end.  How she comforted me.
 
The song I choose is the 1982 single “Back on the Chain Gang” by The Pretenders, found on their 1984 album Learning to Crawl. Lead singer Chrissie Hynde wrote it after a member of her band died suddenly of a drug overdose, followed by another bandmate’s similar death a few months later.  I choose it because it comingles grief with a message of endurance.  Along with its nostalgia, the song conveys resistance to oppression – an answering anthem in this time when the right wing seems determined to undermine basic civil rights.  Lila would have nodded and smiled.
 
 
I found a picture of you, 
What hijacked my world that night
To a place in the past
We've been cast out of 
Now we're back in the fight
We're back on the train
Oh, back on the chain gang

A circumstance beyond our control,
The phone, the tv, and the news of the world
Got in the house like a pigeon from hell
Threw sand in our eyes and descended like flies
Put us back on the train
Oh, back on the chain gang

The powers that be
That force us to live like we do
Bring me to my knees
When I see what they've done to you
But I'll die as I stand here today
Knowing that deep in my heart
They'll fall to ruin one day
For making us part

I found a picture of you 
Those were the happiest days of my life
Like a break in the battle was your part 
In the wretched life of a lonely heart
Now we're back on the train
Oh, back on the chain gang
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Chemotherapy resumes and Beck's "Chemical."

4/7/2021

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​I have made it over a few cancer hurdles in the last month or two.  First, I was at last able to get the surgery which converted my temporary ileostomy to a version of a permanent colostomy.  With mine, I retain my neorectum and sigmoid colon (they were too fused with other organs to remove – a consequence of radiation 10 years ago).  Those guts have been rerouted to a tiny external hole, which allows me to introduce soothing medications to that distal end, which is so painfully strictured.  My large intestine is back in use, resulting in perfect continuity, better nutrition, and less inflammation. This arrangement is vastly easier and more comfortable than a temporary ileostomy, and 100% easier than the low anterior resection syndrome that torments those who undergo the usual ileostomy reversal.  
 
Second, I am back to work!  Most of my work can be done from home, although I will certainly be going to schools as well.  I spend lots of time in phone calls and zoom meetings, and I am still working on perfecting an online project regarding social-emotional lesson plans for students.  So far, so good.  I will be retiring as of 30 June, so this is my last kick at the work can.
 
Some of you saw me on CTV’s W5 on 14 March 2021.  The link to the 22-minute deep dive show is here.  They did an expose of the Canadian Medical Protective Association, an organization that is subsidized by taxpayers to defend doctors to the tune of $540M annually.  They hold a surplus of 5 Billion dollars.  Yes, you read that right – that is billions with a “B.”  Did you know you were paying for that?  
 
I resumed chemotherapy this week.  The same cocktail I was on before.  Once again, medical bumbling continues – the requisition for my pre-treatment MRI was sent to the wrong hospital.  This is the third time that has happened.  I was unwilling to delay treatment until it could be rescheduled, and insisted I start back on chemotherapy.  Good thing to, as my cancer blood markers have risen recently.
 
Lest anyone should think I am musically stuck in the 70s, today’s song “Chemical” is from Beck’s 2020 album Hyperspace.  Done in collaboration with Pharrell Williams (of “Happy” fame), this album interestingly integrates NASA data from various space probes into surreal videos.   Using Artificial Intelligence, they paired their songs with closeup images of various celestial bodies.  This song illustrates Saturn and its rings (clicking on the song title will take you to the video).  Although this song is about the vicissitudes of falling in and out of love, I choose it because chemotherapy is indeed a chemical which I must “start again.”
 
You say that love is a chemical
Anodyne to the soul
What I really, really want to know
Is if my mind's in control
 
I'm so high
Love is a chemical
I'm so high
Love is a chemical
Start it, start it again
 
A random thought, a memory
A tidal wave, a melody, I'm on my knees
A sudden change in everything
Don't know when I was leaving feeling well and free
You find love’s just a fantasy
Beautiful and ugly as a life can be
And I don't lose any sleep honestly
 
I'm so high
Love is a chemical
I'm so high
Love is a chemical
Start it, start it again

I can feel it minute by minute by the day
I don't want it running all night this way
Why you got to get it on my mind this way? 
 
Saying what I feel
What can I tell you? Don't know
Why you have to be like that?
Alligator teardrops fall
Love is a, love is a chemical
Burning wears off like a chemical
I don't need anyone to turn me on
I don't need anyone, no
 
And when the feeling is over
There's no explanation
Shock to the system
Infatuation
Shaped like a flower
Strange affirmation
Crown of illusion
Start it, start it again
 
(I’m) Saying what I feel
(So high) What can I tell you? Don't know
(Love) Why you have to be like that?
(Is a chemical) Alligator teardrops fall


Love is a, love is a chemical
(So high) Burning wears off like a chemical
(Love) I don't need anyone to turn me on
(Is a chemical) I don't need anyone, no

Start it, start it again
 
 
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Surgery and The McGarrigle Sisters' "Log Driver's Waltz."

2/20/2021

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Last year, an endoscopist CRC surgeon told me that my planned ileostomy reversal could not happen.  He described my stricture and scar tissue as too extreme, warning me that I would have unendurably horrible bowel function afterward, including possible fecal incontinence, given my tortured anatomy. When he said this, my first thought when was “Oh no!” But I confess my second thought was, “Thank God.”  I well remember the agony of reconnection, and the misery of Low Anterior Resection Syndrome (LARS), the condition of bowel disorganization that lasts years after reconnection.  Given my limited prognosis, I did not want to live my remaining time with LARS. 
 
But my ileostomy was dysfunctional.  It was only partially diverting my digestion, so food waste got past it into the large intestine. But because of the stricture, it could not get out, resulting in chronic buildup of excrement (and toxic excrement at that, due to chemotherapy).  The pain was extraordinary.  I was not a candidate for a full colostomy (in which rectum is removed), because of radiation-induced organ fusion.  So I begged doctors to help me find a way to live with it.  
 
A wise GI specialist, shocked by my condition, told me, “You cannot stay the way you are.”  She advocated for me by calling several colleagues in search of a solution.  In dialogue with my cancer surgeon, they came up with an excellent option:  a double-barrelled colostomy.   This would keep the rectum in place, allow for a colostomy that is 100% diverting, and provide a separate tiny stoma (called a Mucous Fistula) to allow drainage from that blocked lower arm.  This little stoma would not require an appliance, only a bandage.  It would also allow for me to irrigate the distal arm and deliver pain medication to that region.  
 
At long last, I had the long-awaited surgery three weeks ago.  The surgeon needed to deal creatively with all many internal oddities caused by my multiple surgeries.  He said there was so much scar tissue that he had to take out my entire intestine, unravel it, remove the adhesions, repair minor damages, and put it all back in.  He made the mucous fistula come out of the old ileostomy site, and formed the end colostomy from my descending colon.  He and the team were surprised by the extent of the stool buildup. Over three years’ worth of poo had become fossilized throughout the entire large intestine. He said he tried to “milk it out” (!) but it was so fixed and so dehydrated he had to give up.  (All this makes me wonder what would have happened to me if I never got this surgery – would I just explode one day?)
 
Bowels swell when they are handled in surgery, which often results in vomiting.  I required an extra week in hospital, in a limbo between constant barfing and the partial obstruction caused by that “mummy poo” blockage.  The surgeon said once I could eat enough, the transit of food would eventually break that logjam.  Gradually, I kept enough food down to accomplish that log drive.  
 
Now I am at home, recuperating.  I must eat a low-fibre diet for a few more weeks.  My end colostomy is on my left side, and the small mucous fistula is on my right.  Already, I can tell this colostomy is infinitely easier to live with than the ileostomy was.  I am so relieved to have this done.  I feel safer now that my digestion is properly diverted.  Having one’s large intestine online allows for better nutrition, easier medication use, and less inflammation.  I am happy to have mine back on the team.  If I could, I would hug  it!

I return to work on 1 March.  Although I am in better shape now than I was last year when I worked full time, I hope I can maximize the amount of time I am working from home given COVID19.  I have four months until retirement in June - I can do anything for four months.  Chemotherapy must also resume in March, so I have other challenges ahead.  
 
Today’s song is a humorous nod to my digestive obstacles as well as my Ottawa roots.  It is the “Log Driver’s Waltz,” written by Wade Hemsworth in 1979 and sung by Kate and Anna McGarrigle.  Popularized by the amusing NFB cartoon, it emphasizes the skills that log drivers require.  I can’t say my log driving efforts were quite as graceful!

If you ask any girl from the parish around
What pleases her most from her head to her toes 
She'll say I'm not sure that it's business of yours
But I do like to waltz with a log driver 
 
For he goes birling down and down white water
That's where the log driver learns to step lightly 
Yes, birling down and down white water
The log driver's waltz pleases girls completely 

When the drive's nearly over I like to go down
And watch all the lads as they work on the river 
I know that come evening they'll be in the town 
And we all like to waltz with the log driver 
 
For he goes birling down and down white water
That's where the log driver learns to step lightly 
Yes, birling down and down white water
The log driver's waltz pleases girls completely 

To please both my parents, I've had to give way
And dance with the doctors and merchants and lawyers
Their manners are fine, but their feet are of clay
And there's none with the style of my log driver 
 
For he goes birling down and down white water
That's where the log driver learns to step lightly 
Yes, birling down and down white water
The log driver's waltz pleases girls completely 
​
Now I've had my chances with all sorts of men 
But none as so fine as my lad on the river
So when the drive's over, if he asks me again
I think I will marry my log driver 

For he goes birling down and down white water
That's where the log driver learns to step lightly 
Yes, birling down and down white water
The log driver's waltz pleases girls completely
 
Birling down and down white water
The log driver's waltz pleases girls completely 
 
 

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Three surgeries and America's "Three Roses."

1/4/2021

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I know when it is time for a new blog post by the number of people who reach out wondering what is happening to me now.  So faithfully, I update.
 
At last, it is 2021.  
 
This January brings new challenges for me…in the form of three surgeries I have this month.   I am on a chemo break now until March, in order to accommodate them and their recovery period.
 
For the first, on the 7th, I must undergo laser eye surgery again.  Apparently, in about 20% of cataract surgery cases, the capsule containing the artificial lens films over.  Right now, my vision is worse than it has ever been.  Fortunately, there is a speedy solution: both eyes will need to have that film punctured to let light into the lens again. My distance eye may need even further correction.  
 
The second, on the 14th, is not technically a surgery – it is an Examination Under Anesthetic or EUA.  No one has examined me since my cancer recurred, because of COVID19 delays.  A thorough job of this would be very uncomfortable, so my surgeon wants me conked out for it.  On the basis of that exam, he can plan next steps.
 
The third, on the 28th, is a major open surgery in which my ileostomy is taken down and instead the surgeon fashions me a loop or a double-barrel colostomy.   This will afford me a much- improved quality of life, as it will bypass my hopelessly scarred and damaged lower intestine. It will also allow me with treatment options for my stricture, such as dilation or introduction of pain-reducing steroid medication.  I will be in hospital for about a week and will need at least 4 weeks recovery.
 
None of these are cancer surgeries.  The doctors deem surgery to remove the malignancy too risky, given the radiation-induced organ fusion and scar tissue from previous surgeries.  Although it shrank considerably during chemotherapy it is still there, so I must resume chemo in March.  I also hope to return to work in some capacity in March, prior to my scheduled retirement in June.  I have just enough sick time banked to cover February’s recovery. 
 
Meanwhile, I am enjoying my post-chemo recovery.  I am better able to eat (and drink!) now, and my pain has greatly diminished as the tumour receded.   My energy is picking up and my skin reactions are slowly resolving.  My hair remains closely cropped, and I do not expect it will grow back during my break.  I am greatly enjoying seeing more of my son, who has moved back to NS recently.  And Andrew is and remains a brick throughout all of it.
 
I continue with advocacy.  Being the very queen of medical error, I was interviewed about it by W5, a national deep-dive news program.  It is currently in production but should air this month.  Also, I have been active in trying to get government funding for restorative approaches to resolution after healthcare harm.  Currently, the Canadian Medical Protective Association receives $540M of your tax dollars each year.  This money pays for defense counsel for doctors, primarily for malpractice actions, but also for criminal violations.  Not one cent goes to help injured patients or bereaved families, unless they pry it from the CMPA via a lawsuit.
 
I am the rare person who has won a medical malpractice lawsuit.  As described in The Cancer Olympics, the doctors on my diagnostic pathway were disciplined by the College of Physicians and Surgeons of Nova Scotia.  The College investigation as well as the lawsuit uncovered not just poor judgement in my case, but foundational flaws in basic practice that endangered patients.  For example, Dr. One did not take responsibility for tests she herself ordered as a locum. Doctor Two wrote appallingly superficial referral letters which did not even mention she was closing her family practice.  Dr. Three did not follow up on a positive cancer screening test.  General surgeon Dr. Four had abdicated outpatient surgical triage to her high-school educated receptionist.  How long had they practiced that way before being caught? How many people have been jeopardized or harmed by such practice?
 
But not all people have the stomach or stamina to do a lawsuit or a College complaint.  There will always remain a need for medical malpractice litigation for those like me who will lose both life and income.  Nevertheless, we need additional alternatives.  Several nations (e.g., New Zealand, Sweden) have no-fault restorative systems that emphasize apology and learning from the error, while providing some compensation to those disabled by dangerous medical practice.  I and others have been active in promoting a federal petition asking for the government to redirect some of the CMPA’s money towards development of more restorative approaches to medical error, which are more humane for patient and doctors.  We need only 40 more signatures to bring it before Parliament.  Will you stand up for the bereaved and disabled, and for struggling medical staff?  Please consider signing it here: https://bit.ly/3jPLXe5
 
Given my three surgeries, today I chose a song that has “three” in it – “Three Roses” by America, from their 1971 eponymous debut album.  I chose it for its reference to winter companionship, which we all long for today.  The lyrics speak of a reorientation to life. We each must “stop and feel what I want” as we take stock at the start of a new year.  We must re-invent our jobs, our lifestyles, and even our relationships as the pandemic continues and the vaccines are pending.  The song hints at a path forward via contentment and commitment, a warming message in this cold time.  
 
Sitting by the fireside with a book in your hand 
Two lazy dogs sittin' watchin' your man 
Three roses were bought with you in mind 
Three roses were bought with you in mind 
 
I gotta stop and see what I'm on about 
Stop and feel what I want I gotta 
Stop and see what I'm on about 
Stop and feel what I want with you 

Walking through a wonderland, I got you by the hand 
Every move we made, just as if it were planned 
Three roses were bought with you in mind 
Three roses were bought with you in mind 
 
I gotta stop and see what I'm on about 
Stop and feel what I want I gotta 
Stop and see what I'm on about 
Stop and feel what I want with you 
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Cancer improvement and Jane Siberry's "Calling all angels."

11/13/2020

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The pandemic continues to rage on.  Meanwhile, I too continue.
 
I am currently on 13 of 15 infusions of chemotherapy.  A new treatment plan has evolved.  I will undergo a chemo “break” over Christmas.  In early January, I will be assessed  for a non-cancer surgery to take place at the end of that month.  Then I need at least 3 weeks to recover before resuming chemotherapy again.  
 
Currently, it is the opinion of various experts that my GI stricture cannot be dilated.  My surgeon came up with a creative and sensible solution: if I am suitable, he will create a loop or a double-barrel colostomy.  This will allow me to have 100% continuity of digestion, as opposed to the partial diversion I have now, thus solving my mechanical problem of build-up above the stricture.   Also, it will create treatment options for the stricture pain, as anti-inflammatory medications can be introduced to the descending arm.  This approach avoids surgery in the deep pelvis, which my surgeon fears could threaten the VVF repair I had done in Toronto.  I want to protect that repair at all costs.  Although my pelvic tumour remains inoperable, this surgery will help me live with it.
 
Curiously, I can report that over my last three infusions, I feel and function better than I did the previous 10 infusions.  It may be because of the significant reduction in tumour size, and hence tumour pain.  My initial scans suggested a 75% reduction in tumour volume after 5 infusions.  Subsequent scans suggested no further change.  However, I told my oncologist that I sensed ongoing improvement.  And guess what?  My scan of last week says it had indeed reduced by a further 30%.  The oncologist said he always goes with the patient’s impression in such situations, so he agreed to a further 6 infusions.  
 
Everything has improved: pain, energy, sleep and mood are getting better.  The greatest side effects currently are my bizarre skin reactions and hair loss.  The skin reactions change every infusion, and get increasingly odd.  This past infusion, I had a strange rash only between the fingers of my left hand.  The previous one, the rash appeared on my left shoulder.  How weird is that?  
 
So why am I feeling better?  Could it be because I am relieved by the scan results?  By the fledgling hope by that surgery can improve my quality of life?  By the supports (nursing guidance, personal trainer) I have in place?  By Austin and Hannah moving back to relatively-safe Nova Scotia? By better pain control via medication? By the recent increase in my CBD? By the Biden victory in the US election?  Whatever the reason, I am grateful for any reprieve.
 
For those wondering, my famous Halloween stunts went well.  This year, Andrew built a whimsical 10-foot candy shute which led to a life-size monster.  The candy then bounced off the ghoul’s hands and into the waiting bags of the trick-or-treaters.  Kids and parents alike were greatly entertained, with several shouting, “You do Halloween right!”
 
I continue to advocate for patient rights.  I have participated as a panelist in several virtual conferences and webinars in past months.  One in particular stands out: doctors and healthcare leaders in Saudi Arabia wanted to talk about patient safety.  I was so struck by their passion for the topic.  I marvelled at how our discussions transcended the vast distance between us in geography and culture in our vision for safe medical care – such a universal human issue. 
 
Today’s song is the 1991 single “Calling all Angels” by the brilliant Canadian artist Jane Siberry.  Mingling grief and solace, this song is often shared at funerals.  I choose it today because I believe it captures the struggle to remain hopeful, to keep going under unbearable burdens, to face the uncertainty of life under COVID19 (“we’re not sure how this goes”).  Its appeal to otherworldly help echoes how exhausted we are while underscoring that life and nature remains ineffably lovely. The linked version I love best is performed in a gorgeous duet with the incomparable k.d. lang. 
 
Santa Maria, Santa Teresa, Santa Anna, Santa Susannah
Santa Cecilia, Santa Copelia, Santa Domenica, Mary Angelica
Frater Achad, Frater Pietro, Julianus, Petronilla
Santa, Santos, Miroslaw, Vladimir and all the rest
 
A man is placed upon the steps and a baby cries
High above you can hear the church bells start to ring
And as the heaviness, oh, the heaviness, the body settles in
Somewhere you can hear a mother sing
 
Then it's one foot, then the other as you step out on the road
Step out on the road, how much weight, how much?
Then it's how long and how far and how many times
Oh, before it's too late?
 
Calling all angels, calling all angels
Walk me through this one, don't leave me alone
Calling all angels, calling all angels
We're tryin', we're hopin' but we're not sure how
 
Oh, and every day you gaze upon the sunset with such love and intensity
Why?
It's ah, it's almost as if you could only crack the code then you'd finally understand
What this all means
Oh, but if you could, do you think you would trade in all
All the pain and suffering?
Oh, but then you'd miss the beauty of the light upon this earth
And the, and the sweetness of the leaving
 
Calling all angels, calling all angels
Walk me through this one, don't leave me alone
Calling all angels, calling all angels
We're tryin', we're hopin' but we're not sure how
 
Calling all angels (calling all angels), calling all angels (calling all angels)
Walk me through this one, don't leave me alone (walk me through this one, don't leave me alone)
Calling all angels, calling all angels
We're tryin', we're hopin', we're hurtin', we're lovin'
We're cryin', we're callin' 'cause we're not sure how this goes

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    Robin McGee: psychologist, author,
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