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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!
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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.
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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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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.
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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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    Robin McGee: psychologist, author,
    and survivor.

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