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Recovering from #cancer surgery and The Beach Boys' "Vegetables."

2/12/2018

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I have been home after surgery for two weeks.  Recovery is slow but steady.  Today I hope to have the last of my staples out.  Still have the catheter – no date yet for removal of it.  Apparently some patients can have them a month or more.  I have a sporty sized one that attaches to my leg to allow me to get around, and a huge one for bedtime.   The bedtime one is great to prevent that middle-aged-lady-getting-up-at-nighttime-to-pee thing, so I tend to get a really good night’s sleep at least.

While I recover, I am working through the finishing touches of the audiobook of The Cancer Olympics.  I gave a copy of the book to my VON nurse and she texted me this morning to say that she is shocked and hooked after Chapter One.

For two more weeks, I must eat a low fibre low residue diet to allow my intestines to heal.  This is sometimes called a “white diet” – white rice, white meat, white bread, white potatoes.  No raw fruits or vegetables.  Afterwards I can branch out and start normalizing food intake.  My appetite is getting better, such a blessing after months of barely being able to face food.

No word yet on future chemotherapy.  I expect I will learn more in about four weeks.  By report, my oncologist favours doing no chemo at all under circumstances like mine.  He would recommend treating the next recurrence when it becomes obvious.  I myself want to do something, as survival is better with adjuvant chemo after a massive surgery like this.  I wonder if I can do the relatively mild Xeloda therapy I did last time.  After all, although it was an undertreatment, it put me in remission for seven years.  Or perhaps I could do a clinical trial.  One thing seems certain: I cannot do FOLFOX anymore.  The neuropathy in my hands, feet, and tailbone is simply too advanced.

A funny story:  after I got my staples out, Andrew and I went to a Chinese food buffet.  Guess what my fortune cookie said? “Enjoy your good health every day.”

Today’s song is on the subject of food.  Now that my mouth sores have just about healed, I can taste things again.  Although my vegetable range is limited by this “white” diet, I still pine for them.  So this song is “Vegetables” by The Beach Boys, from their 1967 album Smiley Smile.  Apparently, Brian Wilson was on a health craze at the time and wanted to promote veggie consumption.  An interesting sidenote about this song:  Paul McCartney came by the studio while it was being recorded, and he is the one making the sound of crunching celery in the background.  Foreshadowing of his future vegan lifestyle!

I'm gonna be round my vegetables
I'm gonna chow down my vegetables
I love you most of all
My favorite vege-table

If you brought a big brown bag of them home
I'd jump up and down and hope you'd toss me a carrot

I'm gonna keep well my vegetables
Cart off and sell my vegetables
I love you most of all
My favorite vege-table
Oh oh taba vega vegel

I tried to kick the ball but my tenny flew right off
I'm red as a beet 'cause I'm so embarrassed

Oh oh dumb do dumb de dooby do
Oh oh dumb do dumb de dooby do
Oh oh dumb do dumb de dooby do
Oh yeah
Oh badumday oh dumb do dumb de dooby do
Oh badumday oh dumb do dumb de dooby do

Chomp chomp chomp chomp do-do-do do-do-do
Bop bop bop bop do-do-do do-do-do

I know that you'll feel better
When you send us in
Your letter an'
Tell us the name of your
Your favorite vege-table

I know that you'll feel better
When you send us in
Your letter an'
Tell us the name of your
Your favorite vege-table
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Facing the outcome of cancer surgery and Beck's "Waking Light."

2/3/2018

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It takes a long time to resurface after surgery.  Even now I am a little woozy.  I am home at last after eight days in hospital.   It is time that I composed a post that describes my outcome.

The palliative procedures went brilliantly.  The urinary diversion and hysterectomy was fine.  I did not need a total vaginectomy, only a partial which is conventional for hysterectomy. Unfortunately, the vagina and rectum were fused by scar tissue, and needed to be separated, so now I have a temporary ileostomy.  I called my previous ileostomy Flipper in The Cancer Olympics. Flipper #2 may or may not be reversible.  I will know in about 6 months.

But the really bad news was that cancer cells were found in my pelvic sidewall.  This is inoperable. The culprit for this invasion was indeed the right internal iliac node, as suspected in The Cancer Olympics, which implies that I was stage IV all along.  It was already too late for me seven years ago, thanks to Doctors One, Two, Three and Four. My surgeon Carman held my hand as he delivered this bleak news. 

Carman holds out some hope that further chemotherapy might help me.  We will discuss this in February, when I meet with my oncologist in several weeks time.

Today’s song is by alternative artist Beck: “Waking Light.”  The hyperlink is to a live performance on The Tonight Show.  This song was one of the finest releases on Beck’s masterpiece 2014 album Morning Phase for which he won the Grammy for the Best Album of the Year (snatched from under the noses of Beyonce and Ed Sheeran).  He also one Best Engineered Album and Best Rock Album of 2014. “Waking Light” is a psychedelic song about emerging, about waking up.  It resonates with me for how it feels to surface after my long surgery, with so much unknown, and so much ending, and so much beginning.
 
Waking light
Your profile in shadow
Raise yourself to the morning alone
Night is gone
Long way of turning
You've waited long enough to know

When the memory leaves you
Somewhere you can't make it home
When the morning comes to meet you
Lay me down in waking light

No one sees you here
Roots are all covered
There's such a length to go
And how much can you show?
Day is gone
On a landslide a-reeling
I’ve seen your lamplight burning low
 
When the memory leaves you
Somewhere you can’t make it home
When the morning comes to meet you
Rest your eyes in the waking light

When the memory leaves you
Somewhere you can’t make it home
When the morning comes to meet you
Fill your eyes with waking light



​
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Heading into cancer surgery and U2's "Lights of Home."

1/22/2018

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This will be the last time you hear from me before my big surgery on Thursday, 25 January.  Scots among you will recognize this as Robbie Burns Day!  All followers, Scottish or not, should have a dram that day and think of me.

The meeting I had with officials from my local hospital regarding my misread CT went well.  I feel good about it.  I prepared a graphic but dispassionate impact statement about what happened to me because of the error.  They shared their quality structure and initiatives, which I was curious about.  Unpacking what happened, and what should happen going forward, will be a process.  Discussion of my actual incident will await further review, and will be the subject of later meetings.  My main objective for the meeting was to demonstrate a collaborative and conciliatory attitude.   Hopefully, such an approach can result in real improvements in local radiology quality, patient safety, and appropriate error and apology practice.

Another shocking medical snafu – with only two days before surgery, I still had not heard from PreAdmissions Clinc.   Without processing by this clinic, surgery must be cancelled.  I, the family doctor, and the surgeon’s office all called the booking office to find out whether I was booked.  No response after days.  In desperation I called the main switchboard, who did not know where to direct me.   So I asked to speak to someone – anyone – in PreAdmissions.  That person said that the booking clerk had been out sick for days and she had no replacement, so calls to her were not being checked or returned.   I now have an appointment in the last possible slot.   If stories like this do not terrify you about healthcare, they should.

My surgery is on Thursday, 25 January!  The surgery I am expected to have will be extensive.  I has a nickname “MOAS” – the Mother of All Surgeries.  Typically, it takes 8-14 hours, and can even be as long as 20 hours.   I can expect to be in ICU for a few days, and then on that horrible WW1 field hospital ward on the 9th Floor of the VG.  Barring complications, hospitalization is usually 10-12 days, depending on multiple factors.   Recovery is estimated to take 2-4 months.  I will need systemic chemotherapy again, starting 6-8 weeks after the surgery.  Ugg.

Peritoneal metastasis of colorectal cancer usually result in death within 12 months (which has already elapsed for me).  Chemo can extend that to 24 months median survival.  Surgery can add another year or so to that.  Online, I have known 15-year survivors, but also those who died within the year of this surgery.  So it can cure in rare cases, but most often results in buying the patient a little more time.
​
I would like more time!   I am taking my son and his girl and her parents on a river cruise down the Seine in France this July.  If I last long enough, I also plan to rent a villa in Tuscany in 2019, and invite friends and family to come along.   And I hope to travel in our little Alto trailer to some of Canada’s National Parks with Andrew in 2020 on the deferred leave I planned for.  And I would like to go back to work, if I could.  Dreaming about those adventures got me through some very tough chemo days, and hopefully will sustain me through my surgical recovery too.

As anyone who has ever had a loved one in hospital knows, someone must be by the bedside of the patient.  My years of work in patient safety taught me that over 30% of patients who enter hospital experience some form of medical error – most often medication error.  However, that risk is significantly reduced if someone - anyone – is sitting by the patient.   Andrew will be with me much of the time.  We have a friend with a nursing background who can also sit by until the 28th.  We are hoping friends can visit to give them a break – a meal or a few hours of rest – it can be a real boon. 

This surgery carries a 3% risk of death.  I love my surgeon Carman Giacomantonio to bits – always have.  If he cannot save me, no one can.  Some will recognize him as one of the heroes from the Epilogue of The Cancer Olympics, in his efforts to create standards of care for cancer detection and treatment.  It may be a strange thing to say, but if I end up dead or really damaged, I would rather become so under his hands than anyone else’s.

So, everyone, I will see you on the other side.  (I mean the other side of surgery!) 

And today’s song?  Here is “Lights of Home,” from U2’s recently released album, Songs of Experience.  It speaks of dread, and of hope, and of pushing forward into freedom.

I shouldn't be here 'cause I should be dead
I can see the lights in front of me
I believe my best days are ahead
I can see the lights in front of me
Oh Jesus, if I'm still your friend
What the hell
What the hell you got for me
I gotta get out from under my bed
To see again
The lights in front of me

Hey, I've been waiting to get home a long time
Hey now, do you know my name?
Hey now, or where I'm going?
If I can't get an answer
In your eyes I see it
The lights of home
The lights of home

I was born from a screaming sound
I can see the lights in front of me
I thought my head was harder than ground
I can see the lights in front of me
One more push and I'll be born again
One more road you can't travel with a friend
I saw a statue of a gold guitar
Bright lights right in front of me

Free yourself to be yourself
If only you could see yourself
If only you could
Free yourself to be yourself
If only you could see yourself
If only you could
Free yourself to be yourself
If only you could see yourself
If only you could
Free yourself to be yourself
If only you could see yourself
If only you could see
 
 
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Preparing for cancer surgery and Stellar Kart's "Nowhere to go but up."

1/11/2018

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The results of the pelvis MRI are in, and were interpreted for me by my surgeon. 

There is good news and bad news.  The good news is that the mass reduced in size by a very small amount from last MRI: possibly, the first 5 rounds of chemo got most of it.  He anticipates being able to resect and reattach the ureter relatively easily.  The bad news:  he thinks this surgery brings with it a reasonable risk of an ostomy.  Either a temporary one, as I had last time (described as "Flipper" in The Cancer Olympics), or a permanent one, depending on how much damage he is forced to inflict as he operates.   He says he will do everything in his power to avoid those outcomes.  He does not want to use the intraperitoneal superheated chemotherapy, as he fears this will seriously compromise my healing, given that he is operating on radiated tissue which is already compromised in its capacity to heal.

Currently, I am working through the stigmata left by all those months of harsh chemotherapy.  It did very strange things to my hair.  It made the hair on my scalp come out in regular handfuls, necessitating the shaving of my head.  It caused a soft down to grow on my face.  Bizarrely, it increased the length of my eyelashes.  These are not cute “Betty Boop” eyelashes, more like “Elvira Mistress of the Dark” eyelashes – that is, they grow forward, then sideways.  The upper eyelashes are so long in places they actually touch my eyebrows.  It is freakish.

Chemotherapy also compromised my toenails and my feet.  The neuropathy is terrible – numbing pins and needles encase them, and occasionally jolt up my legs.   It also resulted in strange cracks like little slices on the soles of my feet.  I could not walk over much of Christmas.  I was able to get in quickly with a very sweet podiatrist.  He cut out a huge wedge of imbedded toenail that had been stabbing me repeatedly and thwarted healing.  He told me that he has seen cancer surgeries cancelled by infected toenails, so he was glad I got help as soon as I could.  

And now to try to build myself back up before surgery on 25 January.  I am valiantly trying to do 30 minutes a day on the stationary bike and ellipse machine, to improve my lost cardio.  I also hear that one needs biceps and triceps strength, to lift oneself out of bed.   So I will try modest weights.   I once was very strong – I am a long long way away from what I used to be.   I have nowhere to go but up.  As chemo recedes into my rearview mirror, I will get a little better every day.   I am really looking forward to the day I can eat and actually taste food.  And drink!

I have an appointment in two weeks to meet with administration and the clinical head of radiology of my local hospital to discuss the false negative CT I had last December, which so severely compromised my cancer care.  I have written a one-page victim impact statement for them, as I believe the patient’s experience should be part of the analysis of adverse incidents.  I am curious as to how it will be addressed.  I will keep you posted as to how that goes.

“Nowhere to go but up” is the song of unusual Christian punk band Stellar Kart from their fifth and final 2013 album All In.   It is chosen today to reflect my current dynamic of being at the bottom of functioning, but striving for a better alternative.

Running through every open door
But always missing what we’re looking for
Searching everywhere to find it
Never full, never satisfied
Never really understanding why
To win your life you have to lose it

Its time we realize were going down
Cause falling’s like flying till you hit the ground
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up

We can find a way out of this
Cause I will fight and never call it quits
So tell me, are you fighting with me?
So what’s it gonna be?
Is this the end or is it the beginning?
The beginning

So just keep on going
Keep on moving
Don’t let ‘em keep you down
Don’t let ‘em keep you down
So just keep on trying
Keep on fighting
No one can keep us down
No one can keep us down

So meet me at the bottom
We’ve got nowhere to go but up
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up.
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My last chemo, and Tom Cochrane's "Life is a Highway."

12/14/2017

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All Canadians will recognize the Number One hit “Life is a Highway” by Tom Cochrane from his 1991 album Mad Mad World.   Surprisingly, for such an uptempo tune, it actually stems from Tom’s trauma from visiting war-torn and impoverished Mozambique.  He said he wrote it as a “pep talk” to himself, as he could not control what was happening around him.  He was striving to bring a positive perspective to hardship, dislocation, and survivorhood.  I choose it today, my last day of chemotherapy, for those same reasons.     

Life's like a road that you travel on
There's one day here and the next day gone
Sometimes you bend and sometimes you stand
Sometimes you turn your back to the wind
There's a world outside ev'ry darkened door
Where blues won't haunt you anymore
Where the brave are free and lovers soar
Come ride with me to the distant shore
We won't hesitate
Break down the garden's gate
There's not much time left today

Today I was in hospital for my last infusion for a while.   I am really crawling to the finish line here…this last cycle was a harsh one, leaving me bedridden with pain at times.  On Friday, I will have the agonizing ureter stent replaced, and hopefully that will give me some relief.  I just want this hell to end.

Knock me down, back up again
You're in my blood
I'm not a lonely man
There's no load I can't hold
Road so rough this I know
I'll be there when the light comes in
Just tell 'em we're survivors

This Cancer Olympics blog has gone into syndication via www.cancerhealth.com!  They will have chosen select blogs for their website, link here.  For copyright reasons they are omitting the actual song lyrics, but will allow youtube links to the songs.  So readers will just have to sing along in their heads!

On 18 December, I will be attending the book launch of Maike Van Niekerk, whose book Faces Facing Cancer includes my own face. The book profiles 50 Nova Scotians who are in the fight against cancer.  The sponsor of the charity Katrin’s Karepackage, Maike was among the first to promote The Cancer Olympics when my book first came out.  Remarkably, she was decorated by the Governor General the same day I was for a stupendous feat – running 7 marathons in 7 days in honour of her mother’s breast cancer.  A Rhodes scholar, she is now pursing studies at Oxford.  All this is to say that she is an all-round remarkable human being.  It will be very meaningful to meet by the other remarkable humans she has profiled in her book: clinicians, patients, caregivers, advocates. The link to get her book is here. 

To all of those faces in Maike's  book,

Through all these cities and all these towns
It's in my blood and it's all around
I love you now like I loved you then
This is the road and these are the hands
From Mozambique to those Memphis nights
The Khyber Pass to Vancouver's lights

And to all of us, all of you, all those who are sharing in this wild ride of mine:
​
Life is a highway
I wanna ride it all night long
If you're going my way
I wanna drive it all night long
(Gimme gimme gimme gimme yeah) 



 
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The Beatles' "With a Little Help from my Friends" and cancer coping

11/22/2017

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So it is official.  I need three more additional chemotherapy treatments.  I dread it, but I welcome it.   It is something I have to move through to get to the other side.  I will be on chemo during Christmas, and that is not so fun, but once done I get a few weeks to recover before the heavy surgery in mid-to-late January.

Recently, I gave a talk to the medical receptionist course at Nova Scotia Community College.   I drew a timeline across the two blackboards, and together we put an “R” on the line when we came to a place when appropriate medical reception would have turned things around for me.  We identified over 14 such places.  And that was just The Cancer Olympics story, not the awful events surrounding this recurrence, which was also replete with such error.  The students were very engaged.  One put up her hand to say that this class was the most important of any they had – that it shocked them into realizing the great privilege and also the great responsibility associated with their future work.   They gave me a standing ovation, as well as their famous Nosh cookies!

Many have asked why I have not put out a Beatles song on this blog yet.  I am a  fanatic Beatlemaniac.   There are so many Beatles songs that lend themselves to my situation:  “Blackbird,” “Hey Jude,” “Let it Be,” “The Long and Winding Road.”  Paul McCartney still gets letters daily from people who say these songs saved their lives.   But today, I want to choose another famous and charming Beatles song that truly underlines my reality…

“With a little help from my friends,” is a song from what many consider the greatest album of all time, 1967’s Sgt. Peppers’ Lonely Hearts Club Band.   There are many stories surrounding the creation of this song.  Composed for Ringo, whose limited singing range made for songs that everyone can sing along to, John and Paul spent an afternoon together banging away at a piano for dreamlike hours.  Something of their own camaraderie infuses this loving song.  Touchingly rendered by Ringo, it is a tender and inclusive song, at once communal and personal. 

But for me, this song goes out to all of you who have helped me and supported me:  those who brought food; those who sent cards;  those who called, emailed, and messaged me; those who tended my garden; those who took me on outings; those who visited;  those who offered to put me up at their houses; those who sent me songs; those who read The Cancer Olympics (especially those who wrote Amazon reviews!); those who bought me headscarves and other gifts; those who mowed my lawn; those helped with chores; those who carry my school caseload; those who took on my abandoned patients; and, those who sent encouragement via social media.  So many uncountable acts of kindness and community.   I truly love you all:  I could not “get by” without you. 

What would you think if I sang out of tune?
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key

Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm gonna try with a little help from my friends

What do I do when my love is away?
Does it worry you to be alone?
How do I feel by the end of the day?
Are you sad because you're on your own?

No I get by with a little help from my friends
Mm get high with a little help from my friends
Mm gonna try with a little help from my friends

Do you need anybody?
I need somebody to love
Could it be anybody?
I want somebody to love

Would you believe in a love at first sight?
Yes I'm certain that it happens all the time
What do you see when you turn out the light?
I can't tell you but I know it's mine

Oh I get by with a little help from my friends
Mm get high with a little help from my friends
Oh I'm gonna try with a little help from my friends

Do you need anybody?
I just need someone to love
Could it be anybody?
I want somebody to love

Oh I get by with a little help from my friends
Mm gonna try with a little help from my friends
Oh I get high with a little help from my friends
Yes I get by with a little help from my friends
With a little help from my friends
 
 
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Gordon Lightfoot's "If you could read my mind," and cancer scan results

11/2/2017

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After five infusions of chemotherapy, my MRI results are back, but the implications are not yet clear.   The scan showed that the pelvic mass has reduced in volume by 80%; however, the right ureter is still entangled in it.  So although I have responded well to the chemo protocol, it is not enough.  I anticipate they will order more chemo cycles.  I will know more after consulting with the oncologist and the surgeon next week.

The side effects of chemo continue to daunt me.  It seems that as soon as one improves, another takes its place.  You know when you have a bad flu, and it hurts to touch your skin?  It is like that.  I cannot get warm.  The mouth sores and my broken foot just add another level of misery, effort, and frustration to each day.

Despite everything, we pulled off Halloween!  In view of my peg-leg, we adopted a pirate theme.   We scared the teenagers with our scabbards.  When a little kid came to the door dressed as a sweet princess, we would shout, “We pirates be afraid of princesses!” and then scream in terror, which often made the princess dissolve in helpless giggles.  We entertained at least 100 kids with our antics.

Next week, I will be in Halifax at a Canadian Cancer Action Network event aimed at addressing barriers to cancer screening in the Maritime provinces.  So even while desperately sick, I am still slogging away at improving healthcare.

My horrible diagnostic story is profiled in the October 2017 issue of Reader’s Digest!  It is in a piece on speaking up to doctors: the link is here.

Each post, I share the lyrics of a famous popular song, to illustrate the emotions of this journey.  Gordon Lightfoot’s haunting song "If You Could Read My Mind" is from his 1971 Album with the same title. It reached Number One on Billboard’s Easy Listening chart. His voice, so beautifully mellifluous, captures the anguish of his divorce that inspired these lyrics.  To me, this song is about estrangement and loss, and incomprehension of another’s indifference.  Today, I send this song out to Doctor Number Two in my Cancer Olympics story.  She had been my family doctor for 14 years at the time of her negligence in my diagnostic horror-show pathway.  I think of her with great sadness.  I knew her: I thought she knew me.  Does she ever reflect on those events?  On what they did to my life?  Sadly, I will never know.
 
If you could read my mind love, 
what a tale my thoughts could tell 
Just like an old time movie 
'Bout a ghost from a wishing well 
 In a castle dark or a fortress strong 
With chains upon my feet
you know that ghost is me 
And I will never be set free 
As long as I'm a ghost that you can't see

If I could read your mind love,
what a tale your thoughts could tell 
Just like a paperback novel,
the kind the drugstores sell 
When you reach the part where the heartaches come 
The hero would be me
But heroes often fail 
And you won't read that book again because the ending's just too hard to take
 
I'd walk away like a movie star 
Who gets burned in a three way script,
enter Number Two 
A movie queen to play the scene 
Of bringing all the good things out in me 
But for now love, let's be real 
 
I never thought I could feel this way 
and I've got to say that I just don't get it 
I don't know where we went wrong but the feeling's gone 
And I just can't get it back

If you could read my mind love, what a tale my thoughts could tell 
Just like an old time movie,
'bout a ghost from a wishing well 
In a castle dark or a fortress strong
with chains upon my feet 
But stories always end 
And if you read between the lines
you'll know that I'm just trying to understand 
The feelings that you lack 
​
I never thought I could feel this way
and I've got to say that I just don't get it 
I don't know where we went wrong
but the feeling's gone and I just can't get it back.
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Adele's "Rolling in the Deep" and Medical Malpractice

9/14/2017

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I am undergoing chemotherapy Cycle Number Three.  All I can do is shudder.

Cycle Two was tough.  Much tougher than the first cycle.  The fatigue was crushing, dizzying, mind-numbing.  The GI disturbance lasted the entire cycle.  The Vectibix rash is so hot and painful that my face bleeds.  Mouth sores have set in, making eating a challenge.   By the last day of the cycle, I am about 75% human.   It can go down to 25% on the bad days.

One more cycle, and then I have a scan to determine if the chemo is working at all.  If it is, perhaps three more cycles.   If not: well, that does not bear thinking about right now.

Often, my mind goes to the doctors whose neglect resulted in my catastrophic outcome.  The first chapter of The Cancer Olympics is free online.  It generates a lot of intense reactions.  Some physicians have responded saying that it is the worst story of medical malpractice they have ever heard.  Ordinary people react with shock, fear, and disgust.  I was particularly gratified by this post on The Cancer Olympics Facebook page: “RAGE!  That is what I feel after Chapter One.  I hope you sued TF out of each one of those four miserable, pathetic, full of themselves, worthless, wretched dumbasses.”  Feel free to Like that comment!

Adele’s “Rolling in the Deep” from her 2011 Album 21 expresses a powerful anger, raw hurt, profound loss, and a cry for revenge.   Apparently, she wrote it only hours after separating from the man who had scorned her.  The song reached number one in 11 countries and the top five in many more regions. It was Adele's first number-one song in the United States, remaining at the top of Billboard for seven weeks. “Rolling in the Deep" received three Grammy Awards for Record of the Year, Song of the Year and Best Short Form Video.   I was astonished at how much everyone responded to it.  It seemed to strike a huge chord with audiences.  To me, its worldwide resonance says something about the number of hurt and betrayed people out there.  Most of us have been badly burned by someone.

So today’s musical selection goes out to Doctor’s One, Two, Three, and Four, whose irresponsibility and indifference caused me to lose my health, my career, my income, and my life:

There's a fire starting in my heart
Reaching a fever pitch, it's bringing me out the dark.
Finally I can see you crystal clear
Go ahead and sell me out and I'll lay your ship bare
See how I leave with every piece of you
Don't underestimate the things that I will do
 
The scars of your love remind me of us
They keep me thinking that we almost had it all
The scars of your love, they leave me breathless
I can't help feeling
We could have had it all
(You're gonna wish you never had met me)
Rolling in the deep
(Tears are gonna fall, rolling in the deep)
You had my heart inside of your hand
(You're gonna wish you never had met me)
And you played it, to the beat
 
Baby, I have no story to be told
But I've heard one on you
And I'm gonna make your head burn
Think of me in the depths of your despair
Make a home down there
As mine sure won't be shared.

You had my heart inside of your hand
But you played it, with a beating
 
Throw your soul through every open door
Count your blessings to find what you look for
Turn my sorrow into treasured gold
You'll pay me back in kind and reap just what you sow

We could have had it all
 
You had my heart inside of your hand
But you played it
You played it
You played it
You played it to the beat.
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Chemotherapy and Etta James' "At Last"

8/12/2017

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Slainte!

The Irish word for health!

I have just returned from Ireland, a pilgrimage I made with my three sisters.  The trip was everything I hoped it would be.  It had astounding views, delightful food, and smooth and nourishing Guinness.  We sisters had lots of laughs together, as well as some deep spiritual moments. We marveled at the Belfast shipyards where my grandfather and great-grandfather worked, we were in awe before the prehistoric Newgrange tomb 1000 years older than Stonehenge, we were astonished by the rugged beauty of the green landscape.  It was truly the adventure of a lifetime.  I was so grateful to go.

Readers of The Cancer Olympics will remember that my original cancer diagnosis was delayed by two years by medical misconduct.  They will also remember that I fought the province to get the best-practice chemo for my kind of cancer.  Although we were successful in getting FOLFOX chemotherapy added to the formulary in 2011, the approval came too late for me to receive it.

Shockingly, I found myself in the identical situation with my recent cancer recurrence.  A misread CT scan in December missed the recurrence; and yet again, the drug I need is outside the provincial formulary.

The very day before I left for Ireland, I found myself in the centre of a media storm!  CBC radio and new, learning about my plight, immediately provided coverage and advocacy:
A CBC web article: http://bit.ly/2uumVbF
CBC News coverage (at about 8:40 minutes in): http://bit.ly/2vJBsTn
CBC Information Morning radio interview: http://bit.ly/2vBfjqD
 
My own contacts within the government (those who helped me last time) also got involved.  By late that same day, I was called by the Department of Health and Wellness to tell me that I would be granted a special exemption – that I would get Vectibix after all.   It remains “under consideration” for addition to the formulary for all others who need it. 

So I start!  After seven years of striving, I will finally get FOLFOX chemotherapy, with Vectibix as a special agent.  It is such a strange feeling.  So today, my musical selection is the rapturous “At Last” by Etta James.   This song conveys a feeling of deep gratitude and relief for the consummation of a longed-for relationship.  I used to play this song on the last day of school, to capture my feelings of joy at the arrival of summer, but now I play it to express my elation about starting the treatment I deserved years ago.  Those of you who have undergone chemotherapy will laugh at the idea of a love song going out to it.   But, nevertheless, I dedicate this song to FOLFOX:

At last
My love has come along
My lonely days over
And life is like a song

At last
The skies above are blue
My heart was wrapped up in clover
The night I looked at you

I found a dream
That I could speak to
A dream that I can call my own
I found a thrill
To press my cheek to
A thrill that I have never known

You smile
You smile
Oh and then the spell was cast
And here we are in heaven
For you are mine
At last 
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Coldplay's "Clocks" and cancer recurrence

6/30/2017

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Picture
Coldplay’s song “Clocks,” with its famous urgent piano intro, is about mortality and running out of time.  It lends itself very well to my current announcement.

I am absorbing the horrible news that my colorectal cancer, six years in remission, has now returned in my pelvis.  My struggle to survive that first cancer is described in my book, The Cancer Olympics.  Hopefully, I will learn if the tumour is operable on Thursday, when I meet with a surgical oncologist. 

The lights go out and I can't be saved
Tides that I tried to swim against
Have brought me down upon my knees
Oh I beg, I beg and plead, singing

I had an emergency stent put in my ureter yesterday.  The tumour was pressing against it, causing kidney to balloon and my blood pressure to rise.  I feel so much better already. 

Come out of the things unsaid
Shoot an apple off my head and a
Trouble that can't be named
A tiger's waiting to be tamed, singing

Still no idea about whether I can travel this summer.  I will not be back to work in September, as I will need many months off to recovery.  Indeed, it is not clear whether I can ever work again.

Confusion that never stops
Closing walls and the ticking clocks gonna
Come back and take you home
I could not stop, that you now know, singing

My “clear” CT scan from December was reviewed due to the positive PET CT I just had.  It has been determined to be a false negative.  The mass was evident on the December scan, but mistaken for my right ovary.  So, sadly, I have lost 6 months against this metastatic disease due to a “Doctor Five.”   Readers of The Cancer Olympics will understand that number.

Come out upon my seas
Cursed missed opportunities am I
A part of the cure
Or am I part of the disease, singing

My final meeting with oncologist Mark Dorreen was touching for both of us.  I was his very last patient on his last day of work before retirement.  I asked him what chemo I was likely to get.  He answered “FOLFOX” - as told in The Cancer Olympics, this was the drug we successfully fought for in Nova Scotia, but too late for me to receive it.  We all laughed at the irony.   But I saw tears standing in his eyes.

You are, you are
You are, you are
You are, you are

My husband had a tumour removed last week.  Today it was determined to be a benign lipoma.  At last, a mercy.

And nothing else compares
And nothing else compares
And nothing else compares

Time for bed.

You are, you are
Home, home, where I wanted to go
Home, home, where I wanted to go
Home, home, where I wanted to go (You are)
Home, home, where I wanted to go (You are)
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    Robin McGee: psychologist, author,
    and survivor.

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