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 
 
 

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
 
 

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…