The Cancer Olympics
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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 pancreatic 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…
ick here to edit.
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Cancer complications, hope, and Olivia Newton-John's "Magic."

5/21/2018

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It has now been over three months since the mother of all surgeries.   I am doing well in terms of overall energy and lack of pain.   However, my quality of life is marginal given my iatrogenic VVF bladder defect.  When they told me I will have to live this way for 7 more months, I went as low into despair as I have ever been on this journey.  But I know I must fight this desolation – otherwise, I will go under.  And I cannot go under.

So we are proceeding with summer plans, which involves camping in our little trailer and our river cruise in Paris.  I am hoping that I can manage these adventures, given the defect and the oral chemo I am on.  Last time I was on this drug I developed “hand and foot syndrome,” in which the soles of the feet become so hot they blister and peel.  To help forestall this problem, we have invested in a transport chair – sort of a stroller for adults.  It will help me get around Paris without taxing my feet.  And Andrew, ever the engineer, is installing an electric assist on our bicycles.   It feels good to have some enjoyable things to look forward to, no matter how blighted I am.

As for the bladder defect, the NS urologist is of the opinion that an open abdominal repair is too risky, and instead wants to give me a permanent urostomy.  A local urogynecologist has said she can repair it, but I would be left with a vagina only one inch long.  Not great choices.

But a wonderful option for a second opinion has come about through warm, spooky Facebook magic!  Learning of my plight on FB, a woman with the same rare name as my mother (Janette) texted her own surgeon, a pelvic reconstruction expert of great renown in Dallas Texas.  He agreed to review my records – and low and behold HE CALLED ME AT HOME!!!  We spoke for about an hour, and he was every bit as knowledgeable and compassionate as his devoted fans said he was.  His patients in Dallas love him and believe in him so much that they have offered to put me up in their houses!!!!  Not only that, but this doctor is a dead ringer for Mark Dorreen, beloved oncologist of The Cancer Olympics fame.   So I will be flying to Dallas in late June for a consult.  Of course, he cannot commit if he can help me until he sees me.  If I can be repaired, I cannot have it done before October, after my chemotherapy has ended.  The Dallas doctor said he would never have me fly all that way and spend all that money if he were not optimistic he could repair me in a less invasive and catastrophic way.  I wept with relief.

It is coming on time for Relay for Life! Hoping you all can make donations.  To do so, click here. You will get an online tax receipt right away.

And today’s song? “Magic” was Olivia Newton-John’s hit from her 1980 soundtrack album Xanadu.   It was her first chart-topping song before her greatest hit, 1981’s “Physical.”   Spending five weeks at the top of the US charts, it is her greatest Adult Contemporary hit single to date – and she holds 4 Grammys.  Just weeks prior to his death, John Lennon named “Magic” as one of his favourite songs of that year.

This song can have several meanings.  Some take to mean that the singer’s self-esteem is pushing him or her on to greater things.  Some think it reflects the words and intentions of a devoted spouse.  Others say that it is about a spirit guide, or guardian angel.  I like all those interpretations; but most of all, I like its dreamy exaltation, and its re-invocation of joyful teenage moments.

As many know, Olivia Newton-John had a recurrence of her breast cancer after 25 years remission.  I am not the only one who has a freakish cancer course.   Today I hope that her own song can serve as her own inspiration, as it does for me and millions of others.

Come take my hand
You should know me
I've always been in your mind
You know I will be kind
I'll be guiding you

Building your dream has to start now
There's no other road to take
You won't make a mistake
I'll be guiding you

You have to believe we are magic
Nothin' can stand in our way
You have to believe we are magic
Don't let your aim ever stray

And if all your hopes survive
Destiny will arrive
I'll bring all your dreams alive
For you
I'll bring all your dreams alive
For you

From where I stand, you are home free
The planets align so rare
There's promise in the air
And I'm guiding you

Through every turn I'll be near you
I'll come anytime you call
I'll catch you when you fall
I'll be guiding you

You have to believe we are magic
Nothin' can stand in our way
You have to believe we are magic
Don't let your aim ever stray

And if all your hopes survive
Destiny will arrive
I'll bring all your dreams alive
For you
I'll bring all your dreams alive
For you

You have to believe we are magic
Nothin' can stand in our way
You have to believe we are magic
Don't let your aim ever stray

And if all your hopes survive
Destiny will arrive
I'll bring all your dreams alive
For you
I'll bring all your dreams alive

For you

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Cancer malpractice justice and Coldplay's "Everything's not lost."

5/1/2018

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I am now sharing about something I have never talked about on this blog.  I can now announce at last that for the past seven years, I have been in litigation against Doctors One, Two, Three, and Four.  The Cancer Olympics describes their conduct, which resulted in a two-year delay in my cancer diagnosis.  I was represented by the avuncular Ray Wagner of Wagner’s Law Firm and his smart-as-a-whip co-counsel Kate Boyle.  The CMPA, the insurance company that defends all doctors in Canada, were unable in all that time to find one expert able to defend the standard of care I received.  So they asked to mediate.  I can now announce at last the case has settled out of court for a to-be-undisclosed amount. 

My cancer recurrence changed the scope of damages in the case.  But it also painted me in a corner.  I would not be well enough, because of chemotherapy and a late January surgery, to endure the 18-day trial scheduled for April.   So I was forced by my health and by my own mistakes at mediation to settle for 63% of the actual value of the case.   Of that amount, I see only 59%, as the rest goes to the lawyers, the insurance companies, and the taxman.

I must tell you that medical malpractice law is not for sissies.  The story of the lawsuit is as wild a tale as the medical story that spawned it.  It was full of suspense:  hours of hard work and research peppered with great lurches forward and backward, and happenings that that ran the full gamut of human emotion.  There were sudden reversals, brinkmanship, rescues, and rapprochement.  There were brilliant and conscientious experts, and there were disgraceful charlatans (such as the expert who sent us in writing, only days before a settlement discussion, his blithe announcement that he had submitted an opinion to the court but had not actually read the case materials!)  Readers of The Cancer Olympics will be touched to hear that I was saved at the 11th hour by Dr. Mark Dorreen, the hero of my past.  His unwavering opinion that I had been an early stage case when I first presented to Doctors One, Two, and Three was the first of several such expert opinions that eventually turned the tide for me.

Emotionally, although it required creativity, stamina, and perseverance on my part, I experienced the suit as helpful to my coping, even foundational to it.  It rallied me.   And if I had to do it all over again, I would do it.   If people with stories like mine do not come forward to lawyers, society will never change.

So what song do I use for this experience?  “Everything’s Not Lost” from Coldplay’s 2000 Grammy-winning album Parachutes is a stirring anthem about helping an underdog.   It is widely considered Coldplay’s “Hey Jude.”  Starting  with a relaxed and assured opening, it then builds to a powerful crescendo.  The singer offers his skills and abilities (his “demons”) to help someone in extremis.   So today, this song goes out in gratitude to Ray Wagner and his team, for his seven eventful years of work on my behalf.
 
When I counted up my demons
Saw there was one for every day
With the good ones on my shoulder
I drove the other ones away
 
So if you ever feel neglected
And if you think all is lost
I’ll be counting up my demons, yeah
Hoping everything’s not lost
 
When you thought that it was over
You could feel it all around
Everybody’s out to get you
Don’t you let it drag you down
 
‘Cause if you ever feel neglected
If you think that all is lost
I’ll be counting up my demons, yeah
Hoping everything’s not lost
 
If you ever feel neglected
If you think all is lost
I'll be counting up my demons, yeah
Hoping everything's not lost
 
Sing out, yeah
Oh oh yeah
Everything’s not lost
 
Come on, yeah
Oh oh, yeah
Come on, yeah
Everything’s not lost
Come on, yeah
Everything’s not lost
Sing out, yeah
Come on, yeah
Sing out, yeah
 
Everything’s not lost
 
 

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Cancer bad news and The First Edition's "I just dropped in (to see what condition my condition was in)."

4/7/2018

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So I saw the urologist yesterday, and it was pretty grim.  He verified of course that I have a bladder defect caused by the surgery I had that is so rare that no one knows how to fix it anymore.  His solution is to try an open abdominal surgery that has a 50% chance of destroying my bladder, and hence leaving me with a permanent urostomy.  When I told him I would like a second opinion, he offered to direct me to his mentor in Toronto or a friend in New York City.  Because urogynecologist’s can repair these defects less invasively, I hope to follow up on a lead on an urogynecology practice leader in Dallas Texas.  I had high hopes for a laparoscopic clinic in Atlanta Georgia, but they refused me as a candidate due to my history of radiation.  My urologist said his preferred plan is to make me wait 7 more months for his help.  This will  give me time to pursue other opinions.  It will also allow me to finish my 5 remaining months of Xeloda, the oral chemo I was on 7 years ago as described in The Cancer Olympics.   But what a hell to live in.  As a cancer patient with very little time left to live, it seems a shame to live it this way.

In positive news, my son Austin has been accepted into Cognitive Neuroscience at the University of Waterloo – his dream.  If there is anyone suited to being a university professor, it is Austin: he loves to teach, he loves creative research, he is fascinated by the brain, and he even loves to mark papers.  He will start in September.  He and his girl and two warring cats will begin their lives there in the fall.

And today’s song? “Just dropped in (to see what condition my condition was in)” is a psychedelic pop tune written by was written by Mickey Newbury but immortalized by Kenny Rodgers and The First Edition in 1967.  It went to #5 on the top 100.   Famously, this song is the background to the Saddam-Hussein-at-the-bowling-alley dream sequence in the Coen brother’s cult hit movie The Big Lebowski.  I choose it today as it describes the surreal nature of my experiences with finding out how damaged I really am, and how hopeless my options seem to be.

(Yeah, yeah, oh-yeah, what condition my condition was in)

I woke up this mornin’ with the sundown shinin’ in
I found my mind in a brown paper bag within
I tripped on a cloud and fell-a eight miles high
I tore my mind on a jagged sky
I just dropped in to see what condition my condition was in

(Yeah, yeah, oh-yeah, what condition my condition was in)

I pushed my soul in a deep dark hole and then I followed it in
I watched myself crawlin' out as I was a-crawlin' in
I got up so tight I couldn't unwind
I saw so much I broke my mind
I just dropped in to see what condition my condition was in

(Yeah, yeah, oh-yeah, what condition my condition was in)

Someone painted "April Fool" in big black letters on a "Dead End" sign
I had my foot on the gas as I left the road and blew out my mind
Eight miles outta Memphis and I got no spare
Eight miles straight up downtown somewhere
I just dropped in to see what condition my condition was in

I said I just dropped in to see what condition my condition was in
Yeah yeah oh-yeah

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Cancer surgery complications and The Carpenters' "Rainy Days and Mondays"

3/15/2018

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Just when you think you have suffered every misery and indignity there is with cancer…another one comes along.   My catheter has been out for weeks, but I function as if it is still there; that is, my bladder does not fill and the urine just comes out when it wants to.  Standing and walking – functional abilities I have grown rather attached to - bring on the waterworks.   The urologist says that nerves to my bladder were severed during surgery, and it may take six months for this chronic leakage to get better.  SIX MONTHS???  When I heard that, I went to Costco and bought the largest box of Poise bladder control pads I could find.  Six months is a long time, and I must go through 8 pads a day.  I suggest all of you go out and buy stock in Depends.  I will personally drive up their value. 

Otherwise, I continue to mend after surgery.  I am no longer on any pain medication.  I can do 40 minutes on the ellipse machine.   I am off all dietary restrictions, and am happy to be able to eat again.  However, my life is very, very small.  I rarely leave the house.  My time is nevertheless consumed with all kinds of hassle responsibilities like the endless paperwork involved in applying for Long Term Disability.  So I welcome visitors!

I have an announcement to make: my public blog at www.thecancerolympics.com, has won an award!  Out of many contenders, it won for “Most Creative,” for ihadcancer.com’s competition for the Best Cancer Blogs of 2017.  Here is what they wrote about it:

“Robin authored The Cancer Olympics, an account on her story with late-stage colorectal cancer, and started her personal blog shortly after her book's publishing. What is special about Robin's blog is that she pairs each post with a song, including its lyrics, to illustrate a specific feeling, experience, thought, or stage in her fight. From linking classics like The Beatles' "With a Little Help From My Friends" with cancer coping, to pop rock band Coldplay's "Clocks" with learning of her own recurrence, she has proven that there is a healing benefit to expressing yourself through creativity. Utilizing music, specifically, is a powerful way of communicating things that otherwise can feel indescribable. When there are no words, music speaks for us, and when times look grim, or bright- music is there to lift us up every step of the way.”

I had my oncology appointment recently.  My oncologist was in favour of a watch and wait approach.  Because they could not get a clear margin from my pelvic sidewall during surgery, recurrence is inevitable.  He would prefer to reserve treatment for when another solid tumour forms. However, I asked to get Xeloda, the oral chemo I had with my primary tumour.  After all, it put me in remission for 7 years.  He agreed easily, saying there was no one correct answer in a case like mine.  We will try it for 6 months, or perhaps less if I cannot tolerate it. So I will start it in about two weeks, if my next CT scheduled for then shows no visible cancer.   It was so nice – and a little strange – to be able to access a cancer drug without a huge fight!
​
Along the theme of water and rain, today’s song taps into my feelings of discouragement about my seeming never-ending stream of urinary complications (no pun there!).  The Carpenters’ self-titled 1971 album contained this famous song, “Rainy Days and Mondays,” that went to number 2 on the Billboard Hot 100 chart.  It was kept out of first place only by Carole King’s “It’s too late.” (A song I don’t want to use!)  Poor Karen Carpenter, who died of complications from anorexia, had a lovely contralto voice and is considered to be one of the best female vocalists of all time by Rolling Stone magazine.  I still miss her.
​
Talkin' to myself and feelin' old
Sometimes I'd like to quit
Nothin' ever seems to fit
Hangin' around
Nothin' to do but frown
Rainy days and Mondays always get me down

What I've got they used to call the blues
Nothin' is really wrong
Feelin' like I don't belong
Walkin' around
Some kind of lonely clown
Rainy days and Mondays always get me down

Funny, but it seems I always wind up here with you
Nice to know somebody loves me
Funny, but it seems that it's the only thing to do
Run and find the one who loves me (the one who loves me)

What I feel has come and gone before
No need to talk it out (talk it out)
We know what it's all about
Hangin' around (hangin' around)
Nothin' to do but frown
Rainy days and Mondays always get me down

Funny, but it seems that it's the only thing to do (only thing to do)
Run and find the one who loves me

What I feel has come and gone before
No need to talk it out
We know what it's all about
Hangin' around (hangin' around)
Nothin' to do but frown 
Rainy days and Mondays always get me down
​
Hangin' around (hangin' around)
Nothin' to do but frown
Rainy days and Mondays always get me down
 
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Medical bungling after cancer surgery  and Graham Parker's "Stupefaction."

2/22/2018

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I have yet another story about medical stupidity and medical goodness…When I left the hospital, I still had a catheter.  I needed a procedure (a CT cystogram) before it could be removed.  This procedure checks the integrity of the bladder after a surgery.   The procedure should have taken place 14 days after the surgery.

The residents on the floor forgot to book it. The discharge summary, written by the residents, said it was the surgeon’s office who was to arrange the procedure.  The surgeon’s office thought the residents would do it.  The urologist's surgical report said he would arrange it.  The residents forgot to even copy the urologist on the discharge summary.  So in the end, no one did it.  When 21 days had gone by and I had heard nothing, I called the urologist myself in frustration.  His office said they knew nothing about this referral at all.   The urologist had to start from scratch, so he sent a referral to radiology, which took another week to process.

So Tuesday February 20th was the date of the cystogram.  My next task was getting a doctor to give an order to the VON to authorize removal of the catheter.  Because prolonged catheter use can result in significant functional problems, the VON also needs an order to follow me after removal.  But my surgeon was away on holidays, as was my family doctor.  Even though Nurse Practitioners are empowered to give orders to the VON, mine was “not confident” and would not do it.  The urologist did not want to commit without having a written report.  The VON came over to help, but had to leave because there was no order, job undone.  So what did I do?  Andrew and I jumped back in the car, drove like demons to the hospital, ran into the radiology department, and asked if the Radiology Nurse could help me.  I was practically ready to go postal.

The Radiology Nurse was a delightful young woman.  She said, “I have read your book, and I would be honoured to help you.” 

So now the catheter is out!  I am human again!  Now we wait to see if I have complications.

On another note of human kindness, a VON has been caring for me very assiduously.  She too has recently read The Cancer Olympics.  She has called frequently, arranged supplies, ensured quality care from others, called doctors, and has been tremendously supportive. 

So again, terrible care and great responsive care – just the same as my first cancer.  It upsets me to think that if I had not taken on all the calling myself about the catheter, I would still be waiting, oblivious to the neglect.  Sometimes even superhuman patients cannot get care. When will doctors and their receptionists grasp that patients who have just undergone massive surgeries cannot be expected to do all that heavy lifting?  Why can’t people just take responsibility for the jobs we pay them for?  What THE HELL is happening to patients who cannot speak English, are elderly, or are in too much pain to endlessly lobby for basic care?  IT IS NOT FAIR!!!

And another crazy thing – the Gastroenterology Department at QEII called to say that they are offering me a colonoscopy appointment – from a referral sent to them in APRIL OF 2015!!! Three years ago! “We are backed up,” they said.

Enough ranting.  Today’s song, on the theme of stupidity, is from Graham Parker and the Rumour’s amusing tune “Stupefaction.”  I had his The Up Escalator album in 1980!  Graham Parker preceded punk and new wave music.  His quirky blue-collar image and sarcastic lyrics are believed to have been a major influence on other famous British musicians, namely Elvis Costello and Joe Jackson.  To me, he is very Tom-Petty-esque.  Yes, when it comes to healthcare, I often “get to feeling like a wheel without traction.”
 
The sun is burning, it never changes
The people look up with nothing in their eyeballs
They stare at billboards as if for guidance
There's something wrong here I can't but my finger on
Same thing, same way, everyday,
Stupefaction
oh yeah
 
Drive out on sunset but nothing's moving
The lights are green or is that my imagination?
The people sit there
cameras without action
I can't see the point but I see the attraction
Same thing, same way, everyday
Stupefaction
oh yeah
 
We're going to get clear outa this some day
Because the comfort's so appealing
the bodies so revealing
Just get to feeling like a wheel without traction
Stupefaction
oh yeah
 
I ask the landlord how much you making
Don't you get tired of just taking and taking?
I ask the neighbour why are you so stupid?
Giving us those dirty looks and trying to murder cupid
Same thing, same way, everyday
Stupefaction
ah yeah
 
We're going to get clear outa this some day
Because the comfort's so appealing
the bodies so revealing
Just get to feeling like a wheel without traction
Stupefaction
oh yeah
.
Turn up the TV turn up the radio
Turn up the volume nothing seems to matter
Lay back and slumber bring out the number
Ask the operator what spell we are under
Same thing, same way, everyday
Stupefaction
ah yeah
 
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Same thing same way everyday
Stupefaction
ah yeah
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey.
 
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    Robin McGee: psychologist, author,
    and survivor.

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