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Slow surgical recovery and Bruce Cockburn's "One Day I Walk."

5/3/2019

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Some of you will have seen the two-page spread about me in the Halifax Chronicle Herald.  The interview details my astonishing past, and the online version has two videos about my medical error story, one short and one long.  I was pleased with the piece, because it brings readers of The Cancer Olympics up to date with my ongoing struggles, and because it brings attention to the shortcomings in our healthcare system. 
 
Of course, I am following the story of Marilyn Inez Rudderham, whose tearful FB post regarding a similar diagnostic delay has triggered a firestorm of support, and yielded her national attention and a meeting with the premier.  How powerful social media is!  If only I had it back in the day!  I hope to meet her one day.
 
Me? I continue.  Each day, I go to Toronto General Hospital to the HBOT clinic.  Two hours are spent watching CNN on the monotube TV screen. Each day, I either sleep in the chamber or watch agog as America melts down.  Some days, sleeping makes no difference – things are just as crazed when I wake up as when I went to sleep. 
 
I try to catch the shuttle home, and then eat the hospital food (literally driven over from PMH hospital) dinner they give me. Sometimes I have errands that drag me through Toronto’s subways.  Periodically, I have patient advocacy phone calls to make.  By evening, the pain of my leg is often so bad all I can do is lie down and not move.  Netflix and Crave have become beloved companions.
 
But today holds promise for progress!  Today, I hope to lose my one remaining catheter. O joy!  My surgeon is pleased with my healing overall and thinks I shall be ready to fly. We will see how my inner apparatus works, after being offline for 15 months!  But I digress – many hours ago, I had an MRI (at 4:30 in the morning) to determine the site of my femoral nerve damage.  So very slowly, medical answers will be garnered, and hopefully progress made.
 
I get by on CBD oil and Lyrica (a nerve medication), but those sometimes are not enough.  I use extra-strength Advil to help with those crushing breakthroughs. I am helped significantly by weekend visits with family and friends.  It is so therapeutic to be in a home setting instead of an institution.  Often, homesickness creeps in.  I imagine the beautiful spring in the verdant Annapolis Valley, while see the grey skyscrapers and listen to the shrieking sirens of downtown Toronto. Only about three more weeks to go.
 
Today’s song is a one for someone like me, who has been on many hard pathways, and one who longs for home.  Bruce Cockburn wrote “One day I Walk,” for his album High Winds White Sky from 1971.  It has been covered by many, but his version captures an irony, whimsy, and plaintiveness behind the journey, as well as nascent stirrings of hope for a final refuge. 
 
Oh I have been a beggar
And shall be one again
And few the ones with help to lend
Within the world of men

One day I walk in flowers
One day I walk on stones
Today I walk in hours
One day I shall be home

I have sat on the street corner
And watched the bootheels shine
And cried out glad and cried out sad
With every voice but mine

One day I walk in flowers
One day I walk on stones
Today I walk in hours
One day I shall be home

One day I shall be home

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Surgical nerve damage and The Searcher's "Needles and Pins."

4/3/2019

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It is now one month from my 13-hour surgery.   I am now living in the Princess Margaret Cancer Centre Lodge. Andrew is with me until next week – but I will stay on until mid-May, to finish my hyperbaric oxygen treatments.
 
I have recovered in many ways, but in one way I have not.  Using nerve conductance tests, Sunnybrook neurology has confirmed that I have damage to my left femoral nerve.  This condition is screamingly painful and inhibits my ability to walk.  They said the nerve is not totally dead – there was evidence of conductance in it still – which means that I may recover one day.  They are planning an MRI to locate the exact place of the damage, to determine if the nerve is frayed, compressed, or entrapped.  All doctors tell me that it will be a long, long road.  Some days, all the pain and work described in The Cancer Olympics seems forlornly distant. 
 
So now I get along with the aid of a rolling walker.  One day I will graduate to a cane.  Today a physio taught me some exercises I can do to strengthen the thigh muscles, which can waste with this condition.  I have been started on Lyrica, a medication for severe neuropathy, although I am told that I should not experience pain relief on it for another 6 weeks, as one must build slowly to a therapeutic dose.  They offered me fentanyl (!) to help with pain in the meantime – I refused adamantly.
 
They also prescribed CBD oil for the pain.  In Ontario, this must be ordered from Shoppers Drug Mart online once the doctor’s prescription is sent to them.  The rules state that the drug must be mailed.  If one lives far away, and is staying at a residential facility, one can only receive it by mail if the manager of the residence you are in agrees to its arrival by signing a form.  The Lodge manager refused!  They do not want patient medications to arrive by mail – not even insulin.  The other option is it can be sent to a Health Care Provider.  Toronto General has a policy that no patient medications can be mailed to them either!  Shoppers will not allow it to be picked up from a store either!  A crazy loophole here in Ontario, all the crazier since Ontario citizens can now buy cannabis products over the counter at brick-and-mortar stores.  The solution?  Shoppers agreed to mail it to the Lodge anyway – and when they refuse it, it will be sent to the local post office General Delivery, where I can pick it up. How ridiculous is that? 
 
Meanwhile I still have two catheters with which I must contend.  Hopefully one of them will be discontinued in three weeks.  Other would healing appears to be going well, thanks to HBOT.
 
Today’s song was made famous by The Searchers in 1964, “Needles and Pins.”  I chose it because it somewhat captures the nature of the sensation in my thigh…if needles and pins were an Iron Maiden, that is.  This song went to Number One in the UK, Ireland, and South Africa.  It has been covered by many others, including Tom Petty, but this version gives me the better tingles. 
 
I saw her today, I saw her face, it was a face I loved, and I knew
I had to run away, and get down on my knees and pray
that they'd go away
But still they'd begin, needles and pins 

Because of all my pride, the tears I gotta hide
Hey I thought I was smart, I'd won her heart
Didn't think I'd do, but now I see
She's worse to him than me, let her go ahead
Take his love instead, and one day she will see
Just how to say please, and get down on her knees
Hey that's how it begins, she'll feel those needles and pins
A-hurtin' her, a-hurtin' her
 
Why can't I stop and tell myself I'm wrong, I'm wrong, so wrong
Why can't I stand up and tell myself I'm strong
Because I saw her today, I saw her face, it was a face I loved, and I knew
I had to run away, and get down on my knees and pray
that they'd go away
But still they'd begin, needles and pins
Because of all my pride, the tears I gotta hide
Oh needles and pins, needles and pins, needles and pins
 

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Massive surgery and The Who's "Bargin."

3/18/2019

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I did it.  I endured a massive surgery to repair the horrible complications arising from my cancer surgery last year. 

My surgeon was the world-famous pelvic reconstruction urologist Dr. Sender Herschorn of Sunnybrook Hospital in Toronto.  Essentially, he was confronted with a mass of pelvic organs fused together by radiated scar tissue. He patiently spent 13 hours methodically separating the bladder from the vagina and the bowel. Once they were apart, he was easily able to repair the defects. He used other tissue (omentum) to fashion an interposition graft between the organs so they will remain safe and independent. He accidentally perforated the bowel at one point but stitched that up. Remarkably, I remained strong and stable throughout this very long procedure, and had virtually no blood loss. 

But the bowel was grumpy after all that handling,and began to swell after a few days. Remember from my book  The Cancer Olympics, “Efficiently Vomiting Robin”?  She made another appearance. I spent days with a nasal gastric tube that siphons off the buildup of bile. An NG tubes makes a person more comfortable, as the fluid pressure creates terrible pain and nausea - but they are bleak contrivances. You can eat or drink nothing. The tube makes you gag relentlessly. The suction sound howls all night and day, making sleep impossible. 

Simultaneously, an IV misplacement led to me becoming “continuously interstitial” - meaning that my first my arm and then the rest of my body became inflated by misplaced fluid. They could not access a vein to replace the botched IV, so swollen was I. Within hours I looked like the stay-puffed marshmallow man from Ghostbusters. So the day after a huge surgery, I had no proper pain control, no proper hydration, and many futile punctures. I insisted that they use my chemotherapy portacath. They pushed back, saying it was “against policy” because they did not think it was well situated and they had not implanted it. The arguing went on all day while I worsened and suffered. Finally, a no-nonsense IV nurse just pushed everyone aside and accessed the port. It worked immediately.

As if that was not enough, the epidural they attempted also went awry, resulting in nerve damage that has resulted in a totally numb, painful, and dysfunctional left leg. It is unclear if it will resolve with time.

But despite all of that - every broken and agonized and miserable moment - it has all been worth it. If I can obtain my humanity again, leave behind my freakish defects, become a proper spouse once more, every second of this is worth it. The prospect of normalcy, even a modest one, is overjoying to me. 

So today’s song is “Bargin” by The Who, from their banner 1971 album Who’s Next. That album has so many awards I cannot even start to describe them. In this song, the emotional soaring voice of Roger Daltrey projects a powerful drive and longing for a craved outcome. Some say it is about connecting with love, others with God. I choose it today as it so well expresses my determination to take back my life and my health. 

I’d gladly lose me to find you
I’d gladly give up all I had
To find you I’d suffer anything and be glad

I’d pay any price just to get you
I’d work all my life and I will
To win you I’d stand naked, stoned and stabbed
 
I’d call that a bargin
The best I ever had
The best I ever had
 
I’d gladly lose me to find you
I’d gladly give up all that I got
To catch you I’m gonna run and never stop
 
I’d pay any price just to win you
Surrender my good life for bad
To find you I’m gonna drown an unsung man
 
I’d call that a bargin
The best I ever had
The best I ever had 
 
I sit looking ‘round
I look at my face in the mirror
I know I’m worth nothing without you
And like one and one don’t make two
One and one make one
And I’m looking for that free ride to me
I’m looking for you
 
I’d gladly lose me to find you
I’d gladly give up all I got 
To catch you I’m gonna run and never stop 
 
I’d pay any price just to win you 
Surrender my good life for bad
To find you I’m gonna drown an unsung man
 
I’d call that a bargin
The best I ever had
The best I ever had
 
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Cancer waiting and The Moody Blues "New Horizons."

2/16/2019

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​I am now more than halfway through my preoperative hyperbaric oxygen therapy.  I continue to live at the Halifax Lodge that Gives during the week, as the 3-hour treatments are at 7 am each weekday.  It is comfortable there, the food is good, and I have been blessed with many visitors to help me pass the time.  The HBOT itself is easy (Click here to see a 4-minute video that explains the treatment and profiles our very own Halifax chamber).   I have been able to do some undisturbed reading while in HBOT, which is deeply gratifying.  The last day of this treatment is 1 March - I fly to Toronto for surgery two days later.
 
While at the Lodge, several fellow patients there have read The Cancer Olympics.  Some of them are recently diagnosed, and desperate for guidance.  It consoles me that so many respond to the book’s description of the emotional apocalypse that is cancer; and can envision their way through it because of the book.
 
On 19 February, I will have a PET CT to determine the status of my cancer.  I told my surgeon that even if that scan reveals me to be filled with cancer from head to toe, I still want to pursue first this repair surgery in Toronto before all else.  I emphasized that this is a palliative care issue for me, vital to my quality of life and death.  My greatest fear, however, is that the PET CT results will be so terrible that my chance at repair will be taken away, eclipsed by something that makes the repair impossible.  I will know by the end of next week.  Sigh.
 
Generally speaking, we cancer patients cannot get cancellation insurance for trips.  I intrepidly book them anyway.  This summer, Andrew and I plan a cross-Canada camping journey.  When we reach Vancouver, we will go on an Alaska cruise which will morph into an overland trip through the Yukon.  I have been everywhere in Canada except the Territories, so this is a bucket list item for me.  In the fall, I have booked a villa in Tuscany and invited all my siblings. These travels are like beacons for me – the promise of fun, no matter what state I will be in by then.
 
“New Horizons” is a song from The Moody Blues’ 1972 album Seventh Sojourn.  I listened to this album endlessly as a preteen. The album went to number #1 in the US charts for five solid weeks. The hit singles from it were overshadowed by the re-release of their blockbuster signature song “Nights in White Satin” that same year.  It seems that everyone loved the spirituality and mysticism of these pioneers in progressive art rock.
 
Justin Hayward wrote this song after the death of his father and the birth of his daughter, hence the song’s reflections on a journey with both heartbreak and consolation.  I choose it today because I too am on a new horizon – I am soon off to Toronto for surgery, hopefully to see improvement, hopefully soon to see “beyond the reach of the nightmare come true.”  I find this song deeply moving, and from the youtube comments, many others do too.
 
 
Well I've had dreams enough for one
And I've got love enough for three
I have my hopes to comfort me
I got my new horizons out to sea

But I'm never gonna lose your precious gift
It will always be that way
'cause I know I'm gonna find my own peace of mind
Someday

Where is this place that we have found?
Nobody knows where we are bound
I long to hear, I need to see
'cause I've shed tears too many for me, me

But I'm never gonna lose your precious gift
It will always be that way
'cause I know I'm gonna find my own peace of mind
Someday

On the wind soaring free
Spread your wings, I'm beginning to see
Out of mind far from view
Beyond the reach of a nightmare come true

Well I've had dreams enough for one
And I got love enough for three
I have my hopes to comfort me
I got my new horizons out to sea

But I'm never gonna lose your precious gift
It will always be that way
'cause I know I'm gonna find my own peace of mind
Someday, someway
 
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The Cancer Olympics adventures: Hyperbaric oxygen therapy and Bowie-Queen's "Under Pressure."

1/12/2019

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At last, I have started my hyperbaric oxygen treatments.
 
I have moved into the Halifax Lodge that Gives, where I will live for the next 7 weeks.  My husband Andrew but will fetch me home on weekends.
 
The chamber resembles a great big yellow submarine.  (So I wore my Yellow Submarine socks in celebration).  I arrive at 7 am.  I get into scrubs and have a plastic seal put around my neck.  I and two others and a nursing attendant enter the chamber. Once inside, a clear plastic dome is placed over my head and attached to the seal.  I am seated in a rolling chair.
 
Then, we “dive.” The chamber is pressurized, mimicking the pressures of a descent through ocean depths.  My eardrums bend inward, requiring blowing out to equalize.  Once at the right pressure, pure oxygen is funnelled through to my helmet.  I breathe it naturally.  We go through three cycles of this, finally ‘resurfacing” after 90 minutes.  
 
No electronics are allowed in the chamber, so I happily catch up on my reading.  I feel quite well afterwards, although tired from rising so early.  I am usually all done by 10:15 am.  Then back to the Lodge, to get through the rest of my day.  
 
The Lodge is comfortable and conveniently located directly behind the hospital.  Breakfast is buffet style, lunch is soup and sandwiches, and dinner is provided at 4:30 pm each day.   I hope to spend my long hours of downtime exercising, emailing, walking, and visiting with friends.  Having raised funds for the Lodge for many years, through Relay for Life and through sales of  my book The Cancer Olympics, it is both pleasant and curious to personally enjoy its benefits.
 
I am so happy to have this show on the road.  Any step on the journey to healing of my burdensome dysfunction is so welcome.  The intent of the treatment is to better oxygenate my radiated tissues, to help them withstand future surgery.   I have waited a long time to get this far.  Although there is an enormous distance still to travel - through surgery and recovery and beyond – I am cheered by progress.  Oddly, being focused on this intervention takes my mind off my terminal cancer.
 
What is the song for today?  Because I will be breathing oxygen under pressure each day, I have chosen the Bowie/Queen 1981 collaboration “Under Pressure.”  Popularized by the recent movie Bohemian Rhapsody, this song was rated by Rolling Stone to be the second greatest collaboration of all time. The video was likewise famed. The scat singing, the colliding imagery, and the appeal for another chance seem to me to echo the strange cacophony of my life, so upended by all my cancer treatments and adventures.
 
Mmm num ba de
Dum bum ba be
Doo buh dum ba beh beh
 
Pressure pushing down on me
Pressing down on you, no man ask for
Under pressure that burns a building down
Splits a family in two
Puts people on streets
 
Um ba ba be
Um ba ba be
De day da
Ee day da, that's okay
 
It's the terror of knowing what the world is about
Watching some good friends screaming
"Let me out!"
Pray tomorrow gets me higher
Pressure on people, people on streets
 
Day day de mm hm
Da da da ba ba
Okay
Chipping around, kick my brains around the floor
These are the days it never rains but it pours
Ee do ba be
Ee da ba ba ba
Um bo bo
Be lap
People on streets
Ee da de da de
People on streets
Ee da de da de da de da
 
It's the terror of knowing what the world is about
Watching some good friends screaming
'Let me out'
Pray tomorrow gets me higher, high
Pressure on people, people on streets
 
Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love but it's so slashed and torn
Why, why, why?
Love, love, love, love, love
Insanity laughs under pressure we're breaking
 
Can't we give ourselves one more chance?
Why can't we give love that one more chance?
Why can't we give love, give love, give love, give love
Give love, give love, give love, give love, give love?
 
'Cause love's such an old-fashioned word
And love dares you to care for
The people on the edge of the night
And love (people on streets) dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves under pressure
Under pressure
Pressure
 

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The Cancer Olympics now on audio, and Cat Stevens' "On the road to find out."

11/25/2018

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I am happy to announce that The Cancer Olympicsis now in audiobook form!  It is available through Audible, iTunes, and Amazon.  Audible listeners can get it for free as part of a 30-day trial.  It took me several years to successfully produce this book, so I am pleased to have the story out there in my own narrative voice.  Often, it was ironic to read various passages, given what I know now and my current status.  Many of the living characters have gone on to success, and some to tragedy, since the days I wrote it.  We are such fragile creatures.
 
I recently attended a gala fundraiser for the local hospice.  The sod has been turned and they say it will be complete in 18 months.  When I said that they had better finish it on time for me, a kindly friend joked, “So, you want them to finish it in 30 years, do you?”
 
My treatment path is consolidating.  I move into Halifax’s Lodge that Gives on 6 January, and I start hyperbaric oxygen therapy the next day.  I will live there every day except weekends and holidays until the end of February. My surgery at Sunnybrook Hospital is set for 1 March.  Post-operative HBOT will be at Toronto General Hospital, and I am not sure yet where I will live for that.  Prior to that, we will spend Christmas in Waterloo with our son and other family.
 
I await my treatments by trying to rest up and get ready.  I have re-engaged my personal trainer to try to maximize my fitness before surgery.  I have bought a Vitamix so I can have nourishing smoothies.  I bought a solid new winter coat for all the walking I plan to do while away.  I am stockpiling books and earmarking Netflix shows.  And I have my phone at the ready, hoping to have lovely social visits with all my Halifax friends.  I often think of how I was a shadow of myself on chemotherapy this time last year, and how much stronger I am now in comparison.
 
“On the Road to Find Out” is by the artist formerly known as Cat Stevens, now Yusuf Islam, from his 1970 album Tea for the Tillerman.   A little-known fact is that the singer contracted tuberculosis the year prior to this song’s release.  He spent a year in treatment and convalescence, an experience that drove the intense spirituality of his life and songwriting.  I chose this song for its emphasis on odyssey despite adversity, the finitude of life, and the tension between companionship and solitude. (However, I must own that I equally love its reference to GOOD BOOKS!)  To me, it underscores the many crossroads and roundabouts of my cancer journey, as well as the hard travel it has and will demand of me.   
 
Well I left my happy home
To see what I could find out
I left my folk and friends
With the aim to clear my mind out
 
Well I hit the rowdy road
And many kinds I met there
And many stories told me on the way to get there
 
So on and on I go, the seconds tick the time out
So much left to know, and I'm on the road to find out
 
In the end I'll know
But on the way I wonder
Through descending snow
And through the frost and thunder
 
I listen to the wind come howl
Telling me I have to hurry
I listen to the robin's song 
Saying not to worry
 
So on, and on I go, the seconds tick the time out
So much left to know, and I'm on the road to find out
 
Well I found myself alone
Hoping someone would miss me
Thinking about my home and the last woman to kiss me
 
Well sometimes you have to moan
When nothing seems to suit you
But never the less you know
You’re locked towards the future
 
So off and on you go, the seconds tick the time out
There's so much left to know and I'm on the road to find out
 
And I found my head one day
When I wasn't even trying
And here I have to say
‘Cause there is no use in lying, lying
 
Yes the answer lies within
So why not take a look now
Kick out the devil’s sin
Pick up, pick up a good book now
 
Yes the answer lies within
So why not take a look now
Kick out the devil’s sin
Pick up, pick up a good book now
 
Yes the answer lies within
So why not take a look now
Kick out the devil’s sin
Pick up, pick up a good book now
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Cancer plan and Sting's "Another Day."

10/22/2018

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At last, a plan. We saw the specialist urologist at Sunnybrook and he has a surgical strategy: a combination of an open and transvaginal approach to my defect repair.  He still holds little hope that it will work (“It may fall apart that same day,” he said) but he will try it.  The surgery date is likely 1 March.

But there is a new development as well!  We saw an expert in an obscure treatment known as Hyperbaric Oxygen Therapy.  It involves breathing in high levels of oxygen under pressure, which improves the quality and operability of radiated tissue.  There is a special chamber at the QEII Hospital in Halifax.  She strongly recommended that I do not attempt any surgery without 30 days HBOT preoperatively, and 10-15 treatments postoperatively.  To access it, I will need to live in Halifax at the Lodge That Gives for seven consecutive weeks.  Treatment must occur within 5-7 days on either side of the surgery. Postoperatively, I will need to go to Toronto General for the HBOT.  

The “dives” will be each day at 7 am or 10 am for 90 minutes each day except weekends and holidays. Which means I must twiddle my thumbs for the rest of the day in Halifax until the next treatment.  To avoid Christmas disruption, I will start January 6th.  Others who have undergone this treatment tell me the loneliness of living away from home for so long is challenging.  Although this will be a hardship, I want to know that I did everything I could to improve my dubious outcome.  

Today, we met with an Ontario couple who read The Cancer Olympics.  The husband was tearful as he thanked us for giving them the inspiration they needed to get through the same cancer and its brutal complications.  It was touching, and warming, and comforting – all at the same time.  Feedback like that helps us to go on.

Superstar Sting wrote “Another Day” as the B side for his famous song “If you love someone set them free” for his first post-Police 1985 solo album Dream of the Blue Turtles. I prefer the live version from his live album of 1986 Bring on the Night.  I choose it to reflect how, when each day ends, I am hopefully one step closer to defect recovery.  At the same time, each day that goes by erases one from my foreshortened life. So I am hopeful and sad, both at the same time.

Every day that goes by
A new hungry baby starts to cry
Born astride a painful grave
Drowned in hunger's tidal wave
Pick a child that you can save
It'd be the only one
If Africa escapes starvation
Not only food but education
The desert grows with every minute
Trapping everybody in it
All the children look the same
They wonder why they came

But it's hard to tell the poison from the cure
It's harder still to know the reason why, why, why
The only thing I really know for sure
Is that another day, another day's gone by

Every day that goes by
A brand new missile points towards the sky
We're survivors of a game of chance
Beneath an arms race avalanche
If you survive this winter's cold
You'd be the only one
If we escape annihilation
Not only hope but education
The world is ruled by Bellophiles
Adding to their weapon piles
Imagine what your taxes buy
We hardly ever try

But it's hard to tell the poison from the cure
It's harder still to know the reason why, why, why
The only thing I really know for sure
Is that another day, another day's gone by, 
bye, bye

That this too solid flesh
Would melt and resolve into a dew
Suffocating lassitude
Drowning in my platitude
Trapped by insecurities
I'm not the only one
If I survive this dislocation
Have to use my education
Chief of inactivity
Wasted creativity
Distances our revolution
Silence is consent

But it's hard to tell the poison from the cure
It's harder still to know the reason why, why, why
The only thing I really know for sure
Is that another day, another day's gone by

Bye Bye, Bye Bye.
 

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Cancer news and Aretha Franklin's "Until You Come Back to Me."

9/25/2018

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We have finally returned from our epic journey.  We had driven to Ontario with a monster moving van to transport our son to grad school in Waterloo.  We are only home for three weeks, as we must drive back to Ontario to see the urology specialist again in mid-October.  His report says he may or may not help me, saying that a repair is “not reasonable,” but indicating that he may make an attempt depending on how I seem in October.  So we will drive into uncertainty, as always.

I continue to struggle every day with my bladder defect. It is very difficult physically.  But psychologically, it is worse.  Women with similar problems echo my feelings: I feel subhuman.  I am an inwardly deformed freak.  Indeed, a freak among freaks, as the doctors recoil saying they have never seen such a complex case.  The defect is so soul-crushing, it takes away one’s will to fight cancer.  If I lived in another culture, I would be stoned like a leper.  It is so hard to go on, with such slender hope of ever being repaired.

But I do have positive news. I had a CT scan last week.  The results show no solid tumours in either lung, liver, or pelvis.  I still have cancer at the cellular level in my pelvic sidewall – I am still incurable.  My beloved surgeon Carman Giacomantonio of The Cancer Olympics fame, hopes I might have a longer remission than I anticipate. So this news buys me time.  How much time remains unclear. 

I was narrowly the victim of a fake conference scam!  I was invited to speak at a cancer conference in Barcelona in March.  There is a movement among conferences called #patientsincluded – it is expected, when patients speak, to cover their expenses (as they are not reimbursed by organizations, as all other delegates are).  With considerable pressure and appeal from me, they agreed to waive the $500 registration fee, but would not cover anything else.  When I tweeted about my disappointment at not being able to attend due to these circumstances, it set off a twitterstorm.  Patients, doctors, academics all weighed in.  Touchingly, members of The Cancer Olympics RCO community offered to pay my way via donations.  While heartwarming, that approach would only perpetuate the “Go Fund Yourself” exclusionary policies of many healthcare conferences.  But eventually, someone tweeted me this NY Times article, which called out the conferenceseries.com organizers as “fake academia.”  They take payment from delegates, but do not peer review submissions.  The twitter page of the conference mysteriously vanished after that.  Whew! Dodged a bullet there!

Aretha Franklin died last month of a pancreatic neuroendocrine cancer, and the world mourns the undisputed queen of soul.  Rolling Stone magazine rated her the greatest vocalist of all time, male or female.  Her 1973 cover of the song Until You Come Back to Me (That’s What I’m Gonna Do) conveys the anguish and effort of pursuing a lost lover.  In 1974, this song reached Billboard’s number 1 on the R&B chart and number 3 on the Pop chart in 1974.   Her vocals convey the longing of pursuit, the lyrics show the painful persistence, and the flute brushes it with a tinge of optimism.  This song, with its seemingly hopeless striving to connect with a distant unlistening someone, reminds me powerfully of my own relentless struggle to find a doctor that might help me with my defect.  I hear it, and I feel it – how hard it can be to persuade, how effortful it is to pursue, and the long lengths one must go to be heard.
​
Though you don't call anymore
I sit and wait in vain
I guess I'll rap on your door
Tap on your window pane
I wanna tell you, baby
Changes I've been going through,
missing you, listen you
'til you come back to me that's what I'm gonna do

Why did you have to decide
You had to set me free?
I'm gonna swallow my pride
And beg you to (please, baby, please) see me
I'm gonna walk by myself
Just to prove that my love is true, all for you, baby
'til you come back to me that's what I'm gonna do

Living for you, my dear
Is like living in a world of constant fear
Hear my plea
I've got to make you see that our love is dying

Although your phone you ignore
Somehow I must explain
I'll gonna rap on your door, tap on your window pane
I'm gonna camp by your steps
Until I get through to you
I got to change your view, baby
'til you come back to me that's what I'm gonna do
'til you come back to me that's what I'm gonna do
'til you come back to me that's what I'm gonna do

I'll gonna rap on your door, tap on your window pane
Open up, baby.
I'll gonna rap on your door, tap on your window pane
I'll gonna rap on your door, tap on your window pane

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Cancer Adventures and Death Cab for Cutie's "Soul meets body."

8/10/2018

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​
We have returned from our glorious trip to France! We took our son and his girl, and her parents. We did a river cruise followed by 4 days in Paris. It was a wonderful trip filled with food, laughter, education, and marvel. My favourite excursion was to the little town Van Gogh lived and died in. We even saw the very room where he died; but we also saw the countryside he painted so gorgeously. The art in the museums still has my head spinning,

Sadly, I was so under the weather with chemotherapy side effects that I could not eat much of the delicious french food. Oh well. If you are going to feel bad, you may as well feel bad on vacation.

So now we are home, but not for long. We are helping Austin and Hannah to move to Waterloo, where he starts grad school in September. They have lucked into renting an entire house there. So next week we head out in the cube van with cars and cats in tow. After that, we pick up our trailer again for a spot of camping before coming home mid-September.

Just prior to our trip, I saw an esteemed urologist at Sunnybrook in Toronto. He is an expert on defects like mine, He pronounced me to be complicated but not impossible. Given my history of radiation, he holds out little hope a repair can be done successfully, but he is willing to attempt it. He will see me again in October, once I am off chemo for a month, to reassess. He says he will expedite the surgery if I am a better candidate by then. So hopefully by Christmas I can be a human being again. These defects rob a person of the sense of being a human, so freakish are they.

Today's song is by the Beatlesque Indie group Death Cab for Cutie, Their unique band title comes from a parody song in Magical Mystery Tour. Their hit "Soul meets Body" from their 2005 album Plans perfectly captures a longing for the enjoyment of travel, knowing that death awaits us, and the bonding of relationships fostered under those conditions.

I want to live where soul meets body
And let the sun wrap its arms around me and
Bathe my skin in water cool and cleansing
And feel
Feel what it's like to be new.

'Cause in my head there's a Greyhound station
Where I send my thoughts to far off destinations
So they may have a chance of finding a place where they're
Far more suited than here

I cannot guess what we'll discover
When we turn the dirt with our palms cupped like shovels
But I know our filthy hands can wash one another's
And not one speck will remain

I do believe it's true
That there are roads left in both of our shoes
But if the silence takes you
Then I hope it takes me too

So brown eyes I'll hold you near
'Cause you're the only song I want to hear
A melody softly soaring through my atmosphere

Where soul meets body
Where soul meets body
Where soul meets body

I do believe it's true
That there are roads left in both of our shoes
But if the silence takes you
Then I hope it takes me too

So brown eyes I'll hold you near
'Cause you're the only song I want to hear
A melody softly soaring through my atmosphere

A melody soaring through my atmosphere
A melody soaring through my atmosphere
A melody soaring through my atmosphere.
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Cancer healthcare adventures and Celine Dion's "Thank you."

7/4/2018

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It is time to update you on various developments, some wonderful, some quite sad.

I gave a talk at the National Healthcare Leadership Conference in Newfoundand in the first week of June.  I had only 7 minutes at the end of a long day – but my story had everyone awake.   Asked later what my response was to the movie version of a story very similar to mine, I told my The Cancer Olympics tale of the fax machine at my regional hospital running out of ink, resulting in many unreadable faxes being ignored. I challenged those healthcare leaders (sweeping my finger over the audience) that there was a change they could implement: eliminate the fax machine.  And if they cannot, at least move to fax-to-email, so that the sender and recipient can be tracked.  The following week, the Quality Manager of the Nova Scotia Health Authority tweeted me and others that he was identifying all the fax machines in the NSHA with an aim to eliminating them.  So another small step towards responsible healthcare….

Andrew and I have just come back from 8 days in Dallas.  The wonderful doctor there says that the bladder defect can be repaired transvaginally, but it will be quite risky.  He made some good arguments for going with a permanent urostomy, given my limited time to live.  I have decisions to make among many awful options.  We were quite crushed with disappointment, as we had hoped that we would have better alternatives and more hope from the consult.  But at least I got an expert opinion.

Next week we head off for a month.  Camping, visiting relatives, and then...PARIS!  We will use the time to bring light and fun to our hard life.

Today's song is by Canadian megasuperstar Celine Dion, "Thank You" from her 2013 Album Love me Back to Life.  I offer it up to the astoundingly generous, compassionate, and fun people I met in Dallas.  Devoted patients of the doctor I saw, they put me up in their homes, had a party for me, encouraged and sympathized, and stood beside me as I absorbed my bad news.  Celine's supple and soulful voice perfectly expresses my overwhelming gratitude.
​
Down and out, all alone
Sitting here, sad and blue
The sun is now going down
It’s kinda cold, seeking refuge
I trust a friendly face
Or maybe just a smile
Someone that understands
What I’m going through right now
And just before I…

Lay me down to never wake
I look up and I see you
So with everything I am

Thank you…
Thank you…
Because you didn’t have to
Thank you…
Thank you…
With everything I am
Thank you…

For the real sacrifice and the truth
Behind your giving heart
And how you’d never judge or faulted me
Helped me ‘cause you wanted to

And for your friendly face
And for just your smiles
Simply understanding 
What I’m going through right now
And just before I…

Lay me down to never wake
I look up and I see you
So with everything I am

Thank you…
Thank you…
Because you didn’t have to
Thank you…
Thank you…
With everything I am
Thank you…

‘Cause when no one else would care, you did
And when no one else was there, you were
Now I am so aware
You’re a blessing to me
What did I do to deserve…
To deserve you…
There’s no words
That could describe
That could describe
How much I…

Thank you…
Thank you…
Because you didn’t have to
Thank you…
Thank you…
With everything I am
Thank you…

For everything I am
Thank you… Thank you… Thank you…
Thank you…
With everything I am
Thank you…
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    Robin McGee: psychologist, author,
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