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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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Chemotherapy and Radiohead's "Optimistic."

9/22/2020

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 As the pandemic accelerates throughout the world, I soldier on with chemotherapy.  I have undergone 9 infusions and anticipate another three.  Then, hopefully, I can take an 8-week break over Christmas before starting again.  My most recent MRI suggested stability of the tumour volume, after a very significant reduction (75%) after my first 5 infusions.  Although the scan says it is unchanged, subjectively I feel a reduction in pain and pressure in recent weeks, which seems to indicate ongoing treatment value.  But my fatigue becomes more pervasive as it continues.
 
At this time, I am unwilling to risk the surgical option of total pelvic exenteration – losing every single pelvic organ.  Such a surgery would be drastically morbid.  It would not cure me anyway given the many grains of disease in my pelvic sidewall.  A recent meta-analysis of palliative exenteration predicts a survival of only 14 months after such a debilitating surgery (40% of patients spent those months in and out of hospital with severe complications).  So why would I do that?
 
Atlantic Canada is one of the few COVID19 safe spots in the world at this time.  We have very few cases – only one probable case in NS today.  Nevertheless, I take every precaution I can.  Andrew does all the foraging and other heavy lifting.  I lay low.  We try to exercise each day – often this is only a 30-minute walk.  I have hired a nurse privately (the lovely Hope Gillis at NovaHope.ca) to help me monitor my health and troubleshoot the inevitable healthcare roadblocks.  Because of the pandemic, I have refrained from alternative in-person treatments like acupuncture for neuropathy.
 
I am on a deferred leave from work at this time. I continue with what patient advocacy I can. I have told my eyesight-COVID19-cancer story in recent cancer-related webinars and articles, and  keep up my end on planning committees for healthcare improvement.  I respond the press and to readers of The Cancer Olympics. These activities provide me some purpose during this life hiatus. 
 
So daily life is quite quiet.  I try to keep up with my share of daily chores, although I confess I often lapse into doing puzzles.  It quiets my mind and gives me continuous and immediate reinforcement – something very much missing for me given the emptiness of my social life.  As a news junkie, the insidious rise of Fascism in the United States occupies my thoughts. I keep compulsively going back to the news every few hours, unable to resist that siren call of that impending disaster.  Puzzles help me push away that horror for a short time. How sad is that?
 
In one spot of good news, our son is moving back to Nova Scotia from Ontario this week.  He wanted to anyway, and my recurrence made it even more important.  He will start his Ph.D. in neuroscience at Dalhousie in September 2021.  We found him and his fiancé an apartment in Halifax, so they can self-isolate for the necessary 14 days as soon as they arrive this coming weekend.  They will emerge from quarantine on Thanksgiving Sunday.
 
Today’s song is the ironically titled “Optimistic” from Radiohead’s famous 2000 album Kid A.  I choose it because its tension between cynicism and hope is like a surreal soundtrack for our current COVID19 crisis.  The sonic tone, at once raw and distorted, captures our dystopian reality.  The imagery, replete with survival and extinction metaphors, alternates between grim ruthlessness and anguished altruism.  As we watch the world convulsed by the catastrophe of the virus, we feel like “nervous messed up marionettes.” This song’s refrain is what we must cling to – you can only try the best you can.  The song exhorts us to endure, to hang on.  It is all that I can do.  And all that the world can do, because we have no choice.
 
Flies are buzzing round my head
Vultures circling the dead
Picking up every last crumb
The big fish eat the little ones
The big fish eat the little ones
Not my problem, give me some
 
You can try the best you can
You can try the best you can
The best you can is good enough
If you try the best you can
If you try the best you can
The best you can is good enough
 
This one's optimistic
This one went to market
This one just came out of the swamp
This one dropped a payload
Fodder for the animals
Living on animal farm
 
You can try the best you can
You can try the best you can
The best you can is good enough
If you try the best you can
If you try the best you can
The best you can is good enough
 
I'd really like to help you, man
I'd really like to help you, man
Nervous messed up marionettes
Floating around on a prison ship
 
You can try the best you can
You can try the best you can
The best you can is good enough
You can try the best you can
You can try the best you can
 
Dinosaurs roaming the Earth
Dinosaurs roaming the Earth
Dinosaurs roaming the Earth
​
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Chemotherapy, COVID-19, and The Indigo Girls' "Closer to Fine."

7/26/2020

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I am currently on my 5th infusion of indefinite chemotherapy.  It is no picnic.  But this regimen is much more tolerable than ones I have been on previously.   No mouth sores.  No diarrhea.  No horrific rash. The gradual hair loss has just started, and the fatigue is there.  However, I am able to walk and eat.  These are not little accomplishments for someone on chemotherapy.
 
My greatest struggle is pain.  The cancer pain is pressure, but the neorectal stricture pain is burning torture.  
 
Very recently, I was able to talk to surgeons about what is possible.  Sadly, my neorectum is fused to the posterior vagina at the very base.  Unfortunately, because of this fusion, to risk repair of the stricture is to risk a total pelvic exteneration – losing rectum, anus, vagina, bladder, urethra - all the organs taken out as block.  Although the procedure would extend my life, the morbidity of such an extensive surgery could significantly reduce the quality of that remaining life.  Moreover, due to the cancer in my pelvic sidewall, it cannot cure me.  So I must somehow endure the stricture pain.
 
Which leaves chemotherapy for life as my remaining option.  A recent MRI, done to check for the effectiveness of the systemic treatment, showed an excellent response – a 75% reduction in tumour volume after 5 infusions.  The cancer has retreated somewhat from the urethra.  So right now, this seems to be the path towards saving the urology repair I moved Heaven and Earth to achieve last year.
 
Psychologically, I have been all over the place.  I do not fear death.  But like most of us, I fear great suffering.   The months I went without any surgical opinion and without knowing if the cancer was growing or shrinking were very bleak.  All scenarios go through your mind when the pain escalates.  What does this pain signify? Will I make it through the night?  Through the week? Through the next few months?  Is there any path out?
 
The palliative team have offered to start me on morphine – a drug I hate and fear.  When I protested, “But I don’t want to have to go through withdrawal when I try to get off it in the future,” they looked at me pityingly.  They know I will never get off of it.   But the pain, tearing at me every day, saws away at my resistance to this irreversible step.  
 
Nothing about this situation is straightforward.  One must continually pivot to new news, new ideas, new symptoms.  Family plans are like dice in the air.  The pandemic threatens all things.  It is, as the Indigo Girls say, “a crooked line” through cancer in the age of COVID-19.
 
Which brings me to today’s song.  “Closer to Fine” is from their Indigo Girls 1989 eponymous album.  I choose it today its many evocative messages: how hard it is to hope, how we are consumed by seeking answers, and how surrender to uncertainty can be paradoxically healing.  I suspect many of us in this calamitous time are searching for elusive solutions to the personal crises the pandemic causes.  We mortals must move through this miasma, clinging only to our courage. 
 
 
I'm tryin' to tell you somethin' 'bout my life
Maybe give me insight between black and white
And the best thing you've ever done for me
Is to help me take my life less seriously
It's only life after all, yeah
 
Well darkness has a hunger that's insatiable
And lightness has a call that's hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety 'til I sank it
I'm crawling on your shores
 
And I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine, yeah
The closer I am to fine, yeah
 
And I went to see the doctor of philosophy
With a poster of Rasputin and a beard down to his knee
He never did marry or see a B-Grade movie
He graded my performance, he said he could see through me
I spent four years prostrate to the higher mind
Got my paper and I was free
 
I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine, yeah
The closer I am to fine, yeah
 
I stopped by the bar at three A.M.
To seek solace in a bottle, or possibly a friend
And I woke up with a headache like my head against a board
Twice as cloudy as I'd been the night before
And I went in seeking clarity
 
I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
We go to the doctor, we go to the mountains
We look to the children, we drink from the fountain
Yeah, we go to the Bible, we go through the work out
We read up on revival, we stand up for the lookout

There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine
The closer I am to fine
The closer I am to fine, yeah
 
 
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Chemotherapy begins and America's "A Horse with No Name."

6/5/2020

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So chemotherapy has started after several COVID-19-related and other delays.

I have only had one treatment infusion (the first of at least nine).  Due to the pandemic, no family or friend can accompany me during the 6-hour infusion.  This current protocol of FOLFIRI plus Vectibix seems less toxic than the one I had been on previously; however, it is early days yet.  I am working hard at side-effect prevention by being religious about such prophylaxis as mouth rinsing and moisturizing.  

The recent MRI news is not good.  The cancer has invaded my urethra as well as the right anterior vagina.  This is so discouraging to me, given the Herculean efforts I made to save those organs in the past.  Perhaps the chemotherapy can shrink this mass, perhaps not.  Hopefully I can learn if I have any surgical or radiotherapy options.  Once again, I must pour over research literature to learn what I can, and try to find a way forward.  Sigh.

Relay for Life is virtual this year, and is taking place on 13 June 7-9 EST.  I am appealing for your donations once more. To donate to me and my team – Team Robin – click here.  The Canadian Cancer Society has lost considerable funds due to COVID-19, and their essential services like the Lodge have been compromised.  I want to do what I can to help the organization that has been such a help to me over the past 10 years.

Yes, it has been 10 years.  I was diagnosed originally in May of 2010.  Given that we now know I had stage IV disease all along, I have lived far longer than the statistics would predict.  I like to think that your support has something to do with that!  That, and the solidarity and misson described in The Cancer Olympics.

So what is the song that goes with the bewildering head-trip that is a second cancer recurrence? The melodious folk-rock group America produced their greatest hit, the famous “A Horse with No Name” in 1971.  It reached the top of the charts in many countries.  Banned in some states due to the thought that the horse was a synonym for heroin, it has outlasted that interpretation.   It describes a trek through a mind-bending landscape, and a psychedelic loneliness.  My cancer journey has feels like that – so surreal, so lost, so strange, so ever-shifting.  In this song, the singer’s desert is behind him – or is it?  Like the vast Arizona desert, my journey stretches out in front of me again.

On the first part of the journey
I was looking at all the life
There were plants and birds and rocks and things
There was sand and hills and rings
The first thing I met was a fly with a buzz
And the sky with no clouds
The heat was hot and the ground was dry
But the air was full of sound

I've been through the desert on a horse with no name
It felt good to be out of the rain
In the desert you can’t remember your name
'Cause there ain't no one for to give you no pain
La, la

After two days in the desert sun
My skin began to turn red
After three days in the desert fun
I was looking at a river bed
And the story it told of a river that flowed
Made me sad to think it was dead

You see I've been through the desert on a horse with no name
It felt good to be out of the rain
In the desert you can’t remember your name
'Cause there ain't no one for to give you no pain
La, la

After nine days I let the horse run free
'Cause the desert had turned to sea
There were plants and birds and rocks and things
there was sand and hills and rings
The ocean is a desert with its life underground
And a perfect disguise above
Under the cities lies a heart made of ground
But the humans will give no love

You see I've been through the desert on a horse with no name
It felt good to be out of the rain
In the desert you can't remember your name
'Cause there ain't no one for to give you no pain
La, la
 
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Cancer, COVID-19, Eyesight Advocacy, and The Police's "Message in a Bottle."

5/12/2020

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On the very day that the government announced the cancellation of all elective procedures, 17 March 2020, I was given my PET CT results – my cancer is back in my pelvic sidewall.  Anxiously, amid the confusion and fear surrounding the virus and the shutdown, I strove to connect with doctors.  My plight attracted some media attention, as the world reeled from the terrors of this lethal pandemic.  So much was unknown.
 
In the first weeks of the lockdown I struggled through various obstacles to get the procedures I would need prior to chemotherapy.  I needed to get my failing portacath replaced, and to find a GI specialist willing to dilate a GI stricture.  It took considerable calling, intervention from government insiders, and dogged persistence to get past the terrifying “we are closed” voice message at the end of every telephone line.  
 
My 25 March cataract surgery was cancelled.   My eyesight was rapidly failing due to escalating nuclear cataracts in both eyes.  Without treatment, I would be legally blind in six month and stone blind in 12 months.   Chemotherapy could compromise eye surgery outcomes.  But so focused was I on getting cancer treatment, I gave up on my vision in despair.   Then, in my grief, I tweeted about it:



 
Within hours, I received supportive responses from Twitter all over the world.   Every major media outlet contacted me, with stories from The Globe and Mail, CBC, and CTV National News.  Local news and radio also covered it.   Facebook followers mounted an email campaign to our provincial office of Public Health and CEO of the provincial health authority (NSHA), asking if I could be an exception to the ban on cataract surgery.  
 
One advocate emailed a private opthamologist and encouraged me to email him too.   I knew his clinic was closed, but in a moment of throwaway despair, I emailed him anyway, believing I was crying into the void.  How surprised was I when he called me at home the next day!  He was concerned and compassionate, but told me due to the public health ban he was powerless to help me.
 
But his personal contact encouraged me.  It gave me the idea that perhaps the government would allow an exception if I went with a private clinic, thereby avoiding using provincial resources.   This became the “ask” of the many emailers, tweeters, and others trying to advance my miserable and seemingly lost cause.
 
The famous national radio show CBC’s White Coat Black Art reached out. In the Before Times, I was slated to speak to WCBA about medical error and apology practice.  But the pandemic had swept all that aside. 
 
Show host Dr. Brian Goldman and his team were moved by my plight, and constructed an episode around me and others denied critical care.  The in-depth interviews he conducted were empathic and thoughtful, sensitively capturing my emotional distress.   They underscored the parallel between my current advocacy and the fight described in my book The Cancer Olympics for best-practice chemotherapy 10 years ago.  The show called the NSHA for a statement just as my case came before the CEO.  
 
It worked. The CEO sent an email green-lighting my access to private eye surgery.  Dr. Lakosha of the Halifax Eye Institute booked me in right away.  CBC news celebrated. As I sit here today, both eyes have been repaired.  Blindness has been averted.  Was the sky always blue?
 
I still have much before me to dread.  The cancer pain has started in earnest.  I still need the stricture dilation.  And the chemotherapy I will be starting in about three weeks will be similar to the desperately harsh protocol I was on previously. And COVID-19 lurks like a menacing vulture over all of it.  
 
And yet, I remain comforted and amazed by the outpouring of support I received.  So many people in terror of their lives and finances still had the emotional energy to reach out on my behalf.  Like the advocates in The Cancer Olympics, they rallied around me.  And just as in the past, their intervention will save others.  Several eye patients can now access desperately needed treatments – including, touchingly, the son of the nurse who assisted at my eye surgery.  He was able to get needed but delayed melanoma-related injections in his eye because of our lobbying.  How heartwarming to think that our efforts helped one of my own healthcare providers.   We truly are all in this together.
 
So today’s song is “Message in a Bottle,” by The Police, from their 1979 album Regatta de Blanc.  Sting has recently recorded a version from his home studio in support of healthcare workers, and that version is the one linked.  This song is about seclusion and loneliness, but also about finding solace among other people undergoing the same thing.   My husband Andrew is a tremendous support and partner in my struggles, so I am never truly alone.  But this song resonates deeply:  I sent an “an SOS to the world,” and despite their own isolation, others responded.  My vision was rescued.  Nova Scotia, heartbroken in the wake of the horrific shooting rampage, got some good news.  
 
As Sting says, only hope can keep us together.

Just a castaway, an island lost at sea
Another lonely day with no one here but me
More loneliness than any man could bear
Rescue me before I fall into despair

I’ll send an SOS to the world
I’ll send an SOS to the world
I hope that someone gets my
I hope that someone gets my
I hope that someone gets my
Message in a bottle
Message in a bottle

A year has passed since I wrote my note
But I should have known this right from the start
Only hope can keep me together
Love can mend your life
But love can break your heart

I’ll send an SOS to the world
I’ll send an SOS to the world
I hope that someone gets my
I hope that someone gets my
I hope that someone gets my
Message in a bottle.

Walked out this morning, don’t believe what I saw
A hundred billion bottles washed up on the shore
Seems I’m not alone at being alone
A hundred billion castaways looking for a home

I’ll send an SOS to the world
I’ll send an SOS to the world
I hope that someone gets my
I hope that someone gets my
I hope that someone gets my
Message in a bottle
​
Sending out an SOS…
 

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Cancer recurrence during COVID19 and Jim McGee's "Due for a fall."

3/19/2020

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I certainly picked a bad time to get cancer again.  

On Tuesday my PET CT came back suggestive of recurrence in the right pelvic sidewall.  Because a biopsy at the time of my cancer surgery two years ago told us there were cancer cells there, we knew this day would come.  Those cells were sleeping during my remission but appear to have woken up.   Getting cancer just as the world goes under with COVID19 is such unimaginable bad luck I can barely comprehend it.

Before I can start chemotherapy, I need to have a GI stricture dilated and I need my dysfunctional portacath replaced.  But COVID19 has resulted in a province-wide shut down of all day procedures.  

I have emailed and left messages with my cancer doctors trying to get answers.  Surgeon’s offices are all closed.  There is no answer at the Cancer Centre.  I have no path forward.

The surgery for my escalating cataracts has likewise been canceled indefinitely.  Without it, I will eventually lose my vision and I cannot have it if I am on chemotherapy.  But as one little candle of human kindness, my phenomenal optometrist has stepped up, saying he will monitor my prescription and help me get glasses.

COVID19 has put all of us where cancer patients live: in fear, in isolation, with no security for the future.  All of us are living in surreal times.  My book The Cancer Olympics illustrated how we as a community came together to foster my survival and that of others through our advocacy.  The whole world needs such support today.  All of us. 

Today’s song “Due for a Fall” was written by my brother Jim McGee, after our mother died of cancer.  I choose it today for its resonant imagery of unknown waters, of an uneasy future, and a dreamlike yearning for safety.   

I get the gist of it, the core and the grist of it
Don't need no sordid detail
You found that damned scoundrel, the forger, the vandal
I hope you succeed where I failed
 
Somehow I have drifted beyond the horizon
The spires of my hometown sink slowly behind me
Ahead the abyss where the sky meets the ocean
It's clear to me now I am due for a fall
 
They say the world ends where the sky meets the ocean
No credible witness has ever returned
I fear for the mariners long out to sea
Their children sleep restless until they make harbour
 
Somehow I have drifted beyond the horizon
The spires of my hometown sink slowly behind me
Ahead the abyss where the sky meets the ocean
It's clear to me now I am due for a fall
 
I can't get a grip on it, a handle, a fist on it
My friend denial keeps watch while I'm sleeping
I dreamed that I lived in the time of the healers
The past and the future not mine for the keeping
 
Somehow I have drifted beyond the horizon
The spires of my hometown sink slowly behind me
Ahead the abyss where the sky meets the ocean
It's clear to me now I am due for a fall 

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Cancer confusion and the Hendrix version of "All along the Watchtower."

2/7/2020

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“There must be some kind of way out of here,"
Said the joker to the thief,
"There's too much confusion,
I can't get no relief.”
 
So opens the famous “All along the Watchtower.”  Written by Bob Dylan, it was immortalized by Jimi Hendrix on his 1968 album Electric Ladyland.  Jimi is the greatest guitarist in history according to Rolling Stone magazine. 
 
I choose it today because it captures the anxiety of the healthcare limbo I am in right now.  The speakers feel trapped.  They feel uneasy.  They cannot see the exit.  
 
A recent CT scan showed pelvic sidewall thickening since the last one 18 months ago.  Is it recurrence or post-surgical scar tissue?  I am currently awaiting a PET CT to find out.  No word on a date for it.
 
To have my unstable temporary ostomy reversed, I need to rule out cancer recurrence and dilate the severe stricture I have at my anastomosis site.  But at a recent scope, the surgeon endoscopist said that he believes I am too damaged for reversal.  The resection is too low, and the scarring from repeated surgeries too great, for me to have tolerable function afterwards.  I have asked for a follow up appointment to learn more, but no word on a date for that either.
 
But where does that leave me with the dysfunction and pain I currently have?  I have called every ostomy nurse I know. All have said they have never had a partially diverted patient with a severe stricture.  Yesterday, one said she did not believe any surgeon would convert me to the more tolerable lifestyle of a permanent colostomate: I must remain as I am for life.  And no one can answer if the stricture will ever be treated, or how to manage it if not.
 
In the song, the speakers are troubled by the evasiveness of others.  They doubt the veracity of those around them.  
 
“Businessman they drink my wine,
Plowman dig my earth
No one will level on the line,
nobody offered his word."
 
But I am still alive, two years after my huge cancer surgery.  Most people with aggressive disease are dead by now.  If I am still in remission after two years, reportedly my bleak prognosis improves somewhat, giving me more time.   The speakers in the song also try to rise above the darkness:

"No reason to get excited,"
The thief, he kindly spoke
"There are many here among us
Who feel that life is but a joke
But you and I, we've been through that
And this is not our fate
So let us not talk falsely now,
the hour is getting late."

I have started back to full time work, searching for that illusion of normalcy, and to forge ahead in the face of uncertainty.  I struggle to balance commitment and enthusiasm for my job with my unclear path forward, retirement prospects, and my time remaining on earth.
 
In the song, the narrative vision pulls back, revealing the medieval world of the joker and the thief.  The two are riding towards a fortress as a storm brews and nature menaces.  

All along the watchtower
Princes kept the view
While all the women came and went
Barefoot servants, too

Outside in the cold distance
A wildcat did growl
Two riders were approaching
And the wind began to howl.
 
Will they make it?  Will they be let in?  Are those who are supposed to shelter them trustworthy? 
 
How does it resolve?  Living each day in healthcare suspense, “I can’t get no relief.”
 
 

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Return to work after cancer, medical error, and the Indigo Girls' "Watershed."

12/7/2019

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As those who have heard  my story well know, medical error is rampant.  The CBC recently reported that over 70,000 Ontario patients are avoidably harmed during medical care each year.  In November I and Patients for Patient Safety Canada met with the Minister of Health and Wellness of Nova Scotia.  The meeting was one in a series of roundtables being held in each province. We wanted to propose better post-error policy. 
 
Minister Doherty was very personable, introducing himself to us as "Randy."  (He even asked for an autographed copy of The Cancer Olympics!) He listened attentively to our ask: that if a patient is harmed in hospital, and an investigation into the error ensues, the patient/family will be informed of the outcome in writing.  Also, we recommended patient presence on committees tasked with investigating an adverse incident.  Hopefully, having a patient at the table will help shift the culture from one that protects clinicians and organizations to one that protects patients. 
 
But other big things went down last month.  When I saw my surgeon a month ago, I was looking forward to telling him that I was planning to return to work in January.  I had thought I could postpone my ostomy reversal surgery until my retirement.  He surprised me by saying that I should have the correction as soon as possible.  Apparently, organs get used to being dysfunctional if they are offline too long, making adjustment worse.  I will need many things first: imaging by PET-CT to ensure I am not having another recurrence, endoscopy and balloon treatments to address a stricture, and a pelvic MRI to guide any intervention.
 
It will take months to move through that checklist, provided I am even good to do so. This sudden change of plan is very welcome to me, as I would dearly love to say goodbye to Flipper Number Two.  But there is another consequence of the change.  I am back to work NOW!  I will work, gradually getting to full time, until I must go off for the surgery.  I know from experience, having had a reversal before, that I will be very disabled for many months afterwards.  So I am back at it until my next big disjuncture.  My first full day was last week.
 
Why go back at all, people ask.  Why not just retire?  There are many reasons for my desire to go back beyond the obvious financial advantages.  For many of us, work is an identity.  Because cancer strips us of everything, taking back this aspect of personhood seems like a victory of sorts.  So even a brief sojourn into the working world is like a reclamation.  Socially, it will diversify my restricted existence.  Because I am stage IV, I know well that disability and decline await me one day.  I want another kick at the “normal life” can before they descend.
 
So what is today’s song? The Indigo Girls’ song “Watershed” from their 1990 album Nomads Indians Saints is about decision in the face of uncertainty.  A watershed is an area of land that catches precipitation and drains or seeps into groundwater or another body of water.  It is a place of change. The Indigo Girls’ clever harmonies capture the courage and curiosity it takes to tackle life choices.  Life is capricious – our plans go awry, our way is confounded, our destiny indeterminate.  And yet, we go on because we choose to.  We transform, as the rain does.  
 
Thought I knew my mind
Like the back of my hand
The gold and the rainbow
But nothing panned out as I planned
And they say only milk and honey's
Gonna make your soul satisfied
Well I better learn how to swim
'Cause the crossing is chilly and wide
 
Twisted guardrails on the highway
Broken glass on the cement
A ghost of someone's tragedy
How recklessly my time has been spent
They say that it's never too late
But you don't, you don't get any younger
Well I better learn how to starve the emptiness
And feed the hunger
 
Up on the watershed
Standing at the fork in the road
You can stand there and agonize
'Til your agony's your heaviest load
You'll never fly as the crow flies
Get used to a country mile
When you're learning to face
The path at your pace
Every choice is worth your while
 
And there's always retrospect (when you're looking back)
To light a clearer path
Every five years or so I look back on my life
And I have a good laugh
You start at the top (start at the top)
Go full circle round
Catch a breeze
Take a spill
But ending up where I started again
Makes me want to stand still
 
Up on the watershed
Standing at the fork in the road
You can stand there and agonize
'Til your agony's your heaviest load
You'll never fly as the crow flies
Get used to a country mile
When you're learning to face
The path at your pace
Every choice is worth your while
 
Stepping on a crack (stepping on a crack)
Breaking up and looking back
'Til every tree limb overhead just seems to sit and wait
'Til every step you take becomes a twist of fate (twist of fate)
 
Up on the watershed
Standing at the fork in the road
You can stand there and agonize
'Til your agony's your heaviest load
You'll never fly as the crow flies
Get used to a country mile
When you're learning to face
The path at your pace
Every choice is worth your while
 
Up on the watershed
Standing at the fork in the road
You can stand there and agonize
'Til your agony's your heaviest load
You'll never fly as the crow flies
Get used to a country mile
When you're learning to face
The path at your pace
Every choice is worth your while
 
And when you're learning to face
The path at your pace
Every choice is worth your while

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Bucket list travel and The Partridge Family's "C'mon get happy."

10/24/2019

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After months of travel, I am home again.  
 
My most recent adventure was a bucket-list trip to Italy.  For the first two weeks, I rented a villa in Tuscany along with five of my six siblings, a cousin, and all respective spouses – 12 of us in total.  The final week Andrew and I spent in Sorrento on the Amalfi Coast.  The art, the landscapes, and the food were superlative.  It was joyous, restful, fun, and most importantly – delicious!
 
How did I afford this?  I used the money from the medical malpractice settlement I received after the heinous events described in The Cancer Olympics.   It felt good to see some joy come out of experiences that were so tortuous. Nothing can restore my lost life chances.  However, a fragment of quality of life can be discovered, like a jewel on a beach after a storm and shipwreck.
 
Now home, I must face the music.  I must pursue the medical appointments, blood tests, scans, and all other tests that establish the status of my cancer right now.  I had put all that off while travelling.
 
And now that I am home, I once again begin my patient advocacy adventures.  Several await me.  This month, I will give a talk on my experiences to the medical reception course at my local college.  I am working on two presentations on medical error and appropriate apology practice.  And most important of all, I am scheduled to meet with the Minister of Health of Nova Scotia, along with others, to discuss patient safety. What issues would you like raised? 
 
Before I hit that reset button, I want to relish the memories of my enjoyable family time.  To that end, today’s song is “C’mon get happy” by David Cassidy – the theme from the 70’s hit series The Partridge Family.  My agemates will remember how the Partridge’s travelled together singing their songs.  In Italy, my family did not sing together (apart from “Happy Birthday”) but the celebration of togetherness and travel in this song makes me smile.
 
Hello, world, here's a song that we're singin'
C'mon get happy
A whole lotta lovin' is what we'll be bringin'
We'll make you happy

We had a dream we'd go trav'lin' together
We'd spread a little lovin then we'd keep movin' on
Somethin' always happens whenever we're together
We get a happy feelin' when we're singin' a song

Trav'lin' along there's a song that we're singin'
C'mon get happy
A whole lotta lovin' is what we'll be bringin'
We'll make you happy
We'll make you happy
We'll make you happy
 

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Journey Homewards and Nancy Sinatra's "You only live twice."

8/31/2019

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The bucket list travel continues on! We are on our way home, back to Nova Scotia, travelling back across Canada.  Initially, we crossed to Vancouver, then sailed on a cruise to Alaska.  The latter had a land part of the journey that took us across the state to Dawson City, Yukon.  Afterwards, we flew back to Vancouver, drove the jawdropping Sea-to-Sky highway of BC, and continued from thence over the Rockies.  Now, we are on the glorious prairie.
 
The geography I have seen has been staggering:  stupendous mountains and expansive vistas, voluminous rushing rivers, weird and enigmatic badlands.  The enormity of the landscapes is matched only by the ancientness of their histories.  I am surrounded by story.  In each place, stories are told of the land, and the peoples of it.  Mostly, these are stories of backbreaking work to build railways and farms and homesteads, or to endure the same.  How small are our little lives in the great scope of things?  In Alberta, I held in my hands the bones of a dinosaur dead 75 million years.  Such an experience puts one’s own story and one’s own mortality in perspective.  I will pass away as we all will - and even the land will eventually alter into unimaginable forms.  It has always been so.  
 
My left leg remains numb and dysfunctional due to that post-surgical femoral nerve damage.  I can walk on it now.  It seems such a small price for being able to eat, travel, sleep, and relate like a person.  After two years of brutal treatments for cancer and its complications, it often seemed that anything even approaching normality was forever out of reach. Cancer is a glacier that carves each time it retreats. 
 
I continue, however, to see this second remission as an oasis.  This inner space is finite and precious.  Mindfulness enhances my repose.  Each day is a sanctuary to rest within.   If only I could stay here forever!
 
Today’s song is Nancy Sinatra’s 1967 version of “You only live twice” from the Bond film of the same name.  I remember it fondly as the radio background when I a little girl. I choose it for how it echoes my travel experiences – the sweeping violins speak of seeing from great heights and descending to breathtaking vistas.  But I choose it also for the “carpe diem” resonance of its mystic lyrics, hinting at mortality and second chances.
 
You only live twice
or so it seems
One life for yourself, 
and one for your dreams
 
You drift through the years
and life seems tame
till one dream appears
and love is its name
 
And love is a stranger
who'll beckon you on
Don't think of the danger
or the stranger is gone
 
This dream is for you 
so pay the price
Make one dream come true
you only live twice
 
And love is a stranger
who'll beckon you on
Don't think of the danger
or the stranger is gone
 
This dream is for you
so pay the price
Make one dream come true
you only live twice
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    Robin McGee: psychologist, author,
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