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Chemotherapy and The Beatles' "I'm so tired."

12/21/2022

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Season's Greetings Everyone!
 
I have staggered to a sort of finish line of late.  I had my last FOLFOX chemotherapy 8 December. Recovery from it has been longer than expected, but I suspect that is due to the cumulative impact of it all.   Due to system delays I had to stay on for 9 infusions, instead of the 6 we had planned.  All the side effects from the past I had avoided throughout came down hard after this last treatment: the mouth sores, the nosebleeds, the shivers, the relentless fatigue.  Readers of The Cancer Olympics will remember my “Efficiently Vomiting Robin” persona.  She has made an appearance several times with this chemotherapy. (She is so present that I have made “EVRobin” my sign-in name whenever I play an online game.)  I recently slept for 12 hours two nights in a row – conveying my exhaustion and need for healing.
 
But as harsh as it was, FOLFOX did a great job.  My last PET-CT showed shrinkage of all disease, with them using words like “markedly improved” to describe it.  This means that doing FOLFOX was the right choice for that time.  It makes me a little sad, though.  If I had gotten FOLFOX after my first cancer, it would have been strong enough to get the few remaining cancer cells responsible for my recurrence.  I take solace in reflecting that our lobbying for FOLFOX 12 years ago has spared over 1300 Nova Scotians from being undertreated. 
 
My next step is radiation, which will likely start in the new year sometime.  I fired my bad radiation oncologist and got a sensible one who has said she will strive to protect the bladder repair I went to Toronto for.  I expect I will need to live at the Lodge that Gives again during radiation treatment.  Driving back and forth to the Valley in winter is too exhausting and dangerous in winter.  I don’t know how long I will be there because I will not know the radiation plan for month or more. 
 
What is today’s song selection? "I’m so tired" is from the 1968 double album The Beatles (also known as "the White Album"). It was written and sung by John Lennon, who said of it: "One of my favourite tracks. I just like the sound of it, and I sing it well". During the second verse, Lennon calls Sir Walter Raleigh a stupid git for introducing tobacco to England. John wrote this song while in Rishikesh, India – he was suffering from insomnia, and because he had recently met Yoko Ono, his “mind was set” on her.
 
At the very end of the song, what seems to be nonsensical mumbling can be heard in the background. The mumbling, if played backwards, can be imagined as something along the lines of "Paul is a dead man. Miss him. Miss him. Miss him." This only adds to the many supposed references to the "Paul is dead" conspiracy theory scattered throughout the White album. The mumbling is actually Lennon muttering, "Monsieur, monsieur, how about another one?"
 
I choose it today because I am tired.  Very tired of chemo, and tired by it.  I bet many of you are tired too, with Christmas preparations and events.  Tired of COVID and RSV and all the setbacks to healthcare and education.  Tired of seeming continuous threats to democracy and world peace.  Tired of incivility. Tired of inflation. Tired of being so tired.
 
Let us all have a good rest soon.
 
I'm so tired
I haven't slept a wink
I'm so tired
My mind is on the blink
I wonder, should I get up and fix myself a drink?
No, no, no
 
I'm so tired
I don't know what to do
I'm so tired
My mind is set on you
I wonder should I call you
But I know what you would do
 
You'd say I'm putting you on
But it's no joke
It's doing me harm
You know I can't sleep
I can't stop my brain
You know it's three weeks
I'm going insane
You know I'd give you everything I've got for a little peace of mind
 
I'm so tired
I'm feeling so upset
Although I'm so tired
I'll have another cigarette
And curse Sir Walter Raleigh
He was such a stupid git
 
You'd say I'm putting you on
But it's no joke
It's doing me harm
You know I can't sleep
I can't stop my brain
You know it's three weeks
I'm going insane

You know I'd give you everything I've got for a little peace of mind
I'd give you everything I've got for a little peace of mind
I'd give you everything I've got for a little peace of mind
 

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Cancer treatment and Green Day's "Wake me up when September ends."

9/28/2022

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It is World Metastatic Colorectal Cancer Day today!
 
My prayer for today is that doctors everywhere respect the fact that mCRC is on the rise among those under 50.  Doctors must detect, not dismiss, young people who come to them with CRC symptoms.  Alas, so many rigidly believe that CRC risk begins at 50, and hence brush off symptoms in the young.  It is the single greatest barrier to early detection in this age group.  At the end of October I will head up a virtual panel on Early Onset mCRC at a the Colorectal Cancer Resource and Action Network’s (CCRAN) Symposium on this topic.  Sharing my own story of such medical myopia, described in The Cancer Olympics, might wake someone up.  I have been invited to speak to two health professional groups in October as well.
 
Currently, I am on chemotherapy – a rechallenge of FOLFOX.  It is my last systemic therapy option outside of a clinical trial.  So far, I am doing much better on it than I did in 2017, when it turned me into an extra on The Walking Dead.  This time, I am doing an icing protocol.  That means that throughout the infusion I wear socks, mittens, and leg wraps with ice inside them, and suck on ice cubes. The vasoconstriction that results from icing reduces the impact of the drug on those peripheral body parts.   For me, this has meant no cold sensitivity, no mouth sores, and no taste changes.  I can eat and enjoy food!  It is purported to minimize neuropathy as well, but time will tell on that score.
 
A scan in October will tell us if the drug is working.  Even if it is, I cannot stay on it beyond another cycle due to its neuropathy-inducing properties.   Next step would be palliative radiation, and then some experimental protocol or clinical trial.
 
I continue to have healthcare misadventures.  The radiation oncologist I was initially assigned to proposed a very aggressive radiation plan (40 treatments in 20 days).  He insisted on targeting my pelvic repair surgery as well.  My surgeon vehemently opposed this plan, warning me that it would destroy me, and urging me to get a second opinion.  I spoke to an expert from Sunnybrook on the phone who said such a plan had “the potential to dissolve the bowel.”  Yikes!!!  So I had to fire that radiation oncologist and find my way to another.  The second radiation onc is far more sensible.  She will focus her gentler treatment on the problematic lesion, avoiding radiation to my bladder repair surgery.   What a relief!  Unfortunately, all the runaround delayed my treatments yet again.  I was supposed to start in June.  instead, I started chemo in mid-August.  The takeaway message:  get a second opinion if you have any doubts about a proposed treatment.  Your “spidey sense” that things are amiss must be trusted.  Scary, scary stuff.
 
Today’s song “Wake me up when September ends” is from Green Day’s 2004 famous award-winning album American Idiot.   It was written by frontman Billie Joe Armstrong about the death of his father from cancer when Billie was only 10.  I choose it today for its timeliness (it is the end of September) but also because of its evocation of loss and of the yearning for reprieve from grief.  In real life, we do not get to sleep during the hard part.
​
Summer has come and passed
The innocent can never last
Wake me up when September ends
 
Like my father’s come to pass
Seven years has gone so fast
Wake me up when September ends
 
Here comes the rain again
Falling from the stars
Drenched in my pain again
Becoming who we are
 
As my memory rests
But never forgets what I lost
Wake me up when September ends
 
Summer has come and passed
The innocent can never last
Wake me up when September ends
 
Ring out the bells again
Like we did when spring began
Wake me up when September ends
 
Here comes the rain again
Falling from the stars
Drenched in my pain again
Becoming who we are
 
As my memory rests
But never forgets what I lost
Wake me up when September ends
 
Summer has come and passed
The innocent can never last
Wake me up when September ends
 
Like my father's come to pass
Twenty years has gone so fast

Wake me up when September ends
Wake me up when September ends
Wake me up when September ends
 

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Cancer treatment challenges and Bruce Cockburn's "Pangs of Love."

8/2/2022

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Many people share with me their outrage over the medical errors described in The Cancer Olympics.  What many do not realize is the staggering medical error I have encountered since.  Believe it or not, I have even MORE to share today. My middle name is actually “Anne”, but I am considering changing it to “Medical Error.” It amazes me that anyone survives such a system, full as it is of ignorance and calamity.
 
My last post shared that chemo is no longer working.  Radiation was recommended as an alternative path to controlling the cancer.  The radiation oncologist I saw at QEII proposed an extremely aggressive radiation protocol: 40 radiation treatments over 20 days, accompanied by chemotherapy.  Worse, this radiation oncologist said he planned to specifically target the area where my repair surgery is, “just in case” there are cancer cells there.  My surgeon said he was greatly shocked by this approach and strongly advised me to get a second opinion. 
 
I arranged for an opinion from Sunnybrook, where the repair surgery was done. Two months ago, I requested that the actual images from my most recent MRI to go to Sunnybrook.  I had to get Sunnybrook to request it themselves, as patients cannot request records to be sent to specialists.  At QEII, the policy is that diagnostic images to be shared outside the hospital must be burned to a CD and then sent by snail mail.  After a month, Sunnybrook had still not received it - health records had somehow lost it.  Sunnybrook had to ask a second time and even arranged a courier to pick it up.  They still did not get it – health records had lost it again - a second time!  
 
I called the NS Health Quality folks to ask for help. Guess what? Health records has no system for tracking the records requests from health professionals.  Nothing - not even an excel file or handwritten log of when the request was made.  So, they have no idea how many requests go missing or are unfulfilled.  Even though it is 2022, they do not accept or use any electronic file transfers – only fax machines and regular mail.  In an age when even the Canada Revenue Agency uses a dropbox for large file communication, our healthcare system has not moved on from the last century.  (The quality manager, just new to the job, told me when she heard they used CDs she had to ask them what “CD” stood for.)  She said my case has revealed to them the patient safety dangers of such a primitive approach to communication.  So once again, I am Patient Zero in a test case underscoring a major flaw in Nova Scotia healthcare; geez, I sure would like a break from that role.
 
In the end, the Sunnybrook Radiation Oncologist had to offer an opinion without seeing the MRI images. His view is that aggressive radiation would very likely destroy my bladder repair.  Instead, he recommended mild radiation targeting only the tumours causing pain and leaving the repair alone.  It would not be a treatment aimed at controlling the cancer but would only be a palliative approach to to reduce pain.   Nothing is more important to me than protecting the repair that I and my Toronto surgeon worked so hard for, even if it means dying sooner.
 
So what happens now? The only other option is for me to go back to (ironically) FOLFOX chemotherapy. Last time I was on it I found it physically devastating, and it also left me with considerable permanent neuropathy.  It will likely make my current neuropathy much worse. They told me that I would have to choose between being crippled (FOLFOX) or being made 100% permanently incontinent of urine (aggressive rads).  I choose being crippled.  At least I can aid my mobility with a cane or a walker or a wheelchair.  There is nothing anyone can do to rehabilitate a bladder with a hole burned through it.  
 
So next week I start back on FOLFOX.  I need to buy myself some time before palliative radiation can be sorted.  The plan is for me to go on it for 12 weeks if I can endure it that long.  I truly dread it.  But something has to happen, as the tumour is growing so large it is starting to impact my ability to walk.  All the bungling around records has delayed my treatment by many weeks, and I need it right away.
​
Today’s song “Pangs of Love” is by Canadian virtuoso Bruce Cockburn.   A brilliant guitarist as well as a singer-songwriter, Cockburn is referred to by other artists as “a musician’s musician” – the highest compliment given in those circles.  This song is from his 1988 album Big Circumstance.  He wrote it while travelling in Tibet and recovering from broken love affair. It is thoughtful, meditative, and regretful song, interwoven with his evocative and expressive acoustic guitar.  I choose it today because I have pangs of love for life, a love of existence that leads to the same kind of apprehensive insomnia, mingled with the melancholy of ongoing sorrow and loss.
 
Listen to the rain on this mountain town
Listen to the nightbird's lonesome cry
Listen to the scratch of pen on paper
That's the sound of sleep denied
 
Hear the sleepers toss and turn
Dreaming whatever they're dreaming of
The wind that's clearing the heat from the air
Can't clear my heart of these pangs of love
 
Pangs of love
That's the price you pay
When you give your love
But don't give all the way

Pangs of love
Won't let me go

I came so far around the world
To hear the night say
I told you so

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Cancer Progression and BNL's "Get Back Up."

5/21/2022

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So it comes.  Bad news.
 
My last scan indicated progression despite chemotherapy.  
 
Chemotherapies are like antibiotics.  Eventually, the body develops a resistance to them, and they no longer work to control the tumour.  Patients develop “resistance mutations.”  If one has heterogeneous tumours (some respond, some don’t), eventually the resistant tumour “takes over” the responsive ones, making chemo completely ineffective.  
 
When this happens, sometimes patients can switch to another chemotherapy.  Unfortunately, in my case, I have no other authorized options.  
 
This leaves surgery and radiation as my only hope of local control.  Referrals are in for those opinions, but with the healthcare system still in damage-control it may be many weeks or months before I learn anything.  In previous discussions, the surgeon and I agreed that the ultimate surgery (total pelvic exenteration, or complete removal of EVERY organ in the pelvis) is too morbid for me at my age.  So unless they can propose something else, I expect the surgery road is also a dead end.
 
That leaves radiation.  They have been having good success with some women getting radiation to the pelvic sidewall using very targeted beams and special technologies.  I have a delicate surgical repair in that area, though, and it could fall apart if radiated.  So I need to learn if they can target the radiation precisely, or not.   If they cannot offer the targeted therapy (called SBRT) in NS, I may have to go back to Sunnybrook in Toronto to find an expert who can do it.
 
As super long shot: my last tumour was tested and found to have a mutation often found in breast and prostate cancer. There is an oral chemo pill that is for those disease sites I could try.  In modern cancer science, oncologist want to treat the underlying mutations regardless of the body part involved, but currently all government funding is organized by the body part labels.  So that drug is outside the formulary for colorectal cancer.  Access would be another huge fight, and even if granted I would have to pay out of pocket for it.  (Thank God I won that medical malpractice lawsuit against my bungling diagnostic doctors that helps me cover my prodigious costs of care).
 
Meanwhile, I continue with my advocacy as well as I can.  I am the patient representative on the planning of the National Healthcare Leaders Conference in June.  I am serving on patient panels to promote advances in colorectal cancer, such as lowering the screening age from 50 to 45.  
 
And finally, I am raising money as always for Relay for Life, to support the Canadian Cancer Society.  CCS has really suffered under the pandemic.  We need to build them back up to restore their support and research programs.  I stayed in the Lodge That Gives for 2 months in the past, and may need it again if I get radiation. Please consider donating to my Relay.  Click here to go to my fundraising page, and you will get an automatic receipt online.  For those who donate $100 or more, I will light a luminary to honour your loved one.  
 
Scottish poet Robbie Burns wrote: “The best laid schemes o' mice an' men / Gang aft a-gley.”   We all know this: COVID has made many a travel go awry.  Andrew and I had hoped to go on a trailer trip to Newfoundland this August.  Maybe that can happen, maybe not.  We would really love it if we could, as it would be the crown on our previous tour of all Canadian provinces and a territory. 
 
Today’s song is “Get Back Up” by the clever Canadian group Barenaked Ladies, from their 2015 album Silverball.  It is an extended boxing metaphor that resonates with me as I pivot to face my new treatment challenges.  Truly, I am “on the ropes”.  But what are the options?  Hit the canvas?  The song exhorts us to keep standing.  Which is what I will try to do.
 
 
I'm a little bit worse for wear
Got a little bit more grey hair
I'm not gonna be the next big thing, but I'm getting fitted for a new brass ring
I been dunked, I've been kicked around
Now I'm ready for the big rebound
I know you can't win them all, but I'm swingin' like Pitt gettin' hits in Moneyball
 
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
 
Not everything is sink or swim
You can’t fly if the air’s too thin
The best part of the ride is the freefall
Better keep your arms and legs in the vehicle
Standing eight and I'm on the ropes
Knees givin' but I won’t lose hope
I‘m not the second coming of Muhammad Ali, but can I get a "WOOT" for the boxing imagery?
 
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
 
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
 
Get back, get back up
You gotta get back, get back up
You got a whole stadium on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
Everybody's up on their feet, it's not about a victory or defeat
See you gotta get back, get back up
You gotta get back, get back up
 
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
Gotta get back, gotta get back
 
 
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COVID risk, cancer treatment, and Joni Mitchell's "Both Sides Now."

3/23/2022

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​I have not had COVID19, but it still has harmed me considerably.
 
In July I started a three-month chemotherapy break.  Because of COVID19-related resource deficits, that turned into six months.  My surgeon explained that OR nurses had been seconded to COVID response, delaying all surgeries in the province.  In October, I learned I needed a very minor 15-minute surgical procedure requiring only a few superficial sutures.  I was only able to get that done in December just before Christmas, and thus was only able to access chemotherapy in January.  Scans revealed that my tumour doubled in size during that undue wait.
 
I am now in the thick of chemo treatments, the same recipe I had before (Irinotecan, 5FU, Panitumumab).  The associated stigmata vary each cycle, with the skin rashes and fatigue the most prominent issues.  As harsh as it is, it is a better situation than not being in treatment with a progressing cancer.  At this time, my pain is reasonably controlled by the medications I am on (CBD oil, nortriptyline).  So far, no opiates – I won’t move to them until I absolutely must.  I will not know whether the treatment is working to shrink the tumour until the end of May.
 
Omicron risk has us living a lockdown lifestyle.  We see virtually no one.  I don’t go shopping. Andrew, ever the trooper, is our forager.  Apart from medical appointments, I stay home.  This is not as grim as it sounds, as I try to prioritize fitness every day.  Although many scorn us for being so careful, I consider it my duty to protect myself and my fellow chemotherapy patients and the staff that care for them. Even if I had mild symptoms, a COVID19 infection would jeopardize my treatment.  But worse, unknowing transmission would jeopardize the treatment and indeed the lives of those getting treatment near me. The lady in the chemo chair next to me is over 80 years old. 
 
I continue to be active in advocacy efforts.  My treatment delay experiences have covered in a recent story in Chatelaine magazine, an Amgen video, and a Cancer U Thrivers podcast.  My fundraising was profiled by Canadian Cancer Society, and my book The Cancer Olympics was the subject of an  Ask the Author Cancer U interview on YouTube.  I remain active with Patients for Patient Safety Canada, particularly in a recent initiative to make the post-medical-harm process more humane for both harmed patients and providers.  As well, I am a new member to the regulatory board for my profession of Psychology.  In the later role, I am heading up a committee aimed at making doctoral-level training the entry-to-practice standard for Nova Scotia, as it is in all other provinces.  These projects are time-consuming but also somewhat thrilling.  COVID19 has changed the landscape, making the time ripe for change in healthcare.
 
Today’s song is “Both Sides Now” by the iconic Joni Mitchell from her 1969 album Clouds.  She has been in the news lately, both for her 2021 Lifetime Achievement Award, as well as her brave choice to withdraw her canon from Spotify to protest Joe Rogan’s COVID19 disinformation.  She had polio as a child, and therefore is committed to vaccines. Joni is considered one of the 100 greatest musical artists of all time by Rolling Stone magazine, and her perfectly-crafted “Both Sides Now” is considered among the best 500 songs of all time.  A phenomenal songwriter, Joni was also gifted singer with a 5-octave vocal range.  Her preternatural maturity is shown by the fact that she wrote this poignant cynicism-to-hope song when she was only 20 years old.   I choose it today because it reflects the world-weariness that many of us feel in this time of upheaval in global health and politics, as well as its whisper of wise acceptance “in living every day.”
 
Rows and floes of angel hair
And ice cream castles in the air
And feather canyons everywhere
I've looked at clouds that way

But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way

I've looked at clouds from both sides now
From up and down, and still somehow
It's cloud illusions I recall
I really don't know clouds at all

Moons and Junes and Ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I've looked at love that way

But now it's just another show
You leave 'em laughing when you go
And if you care, don't let them know
Don't give yourself away

I've looked at love from both sides now
From give and take, and still somehow
It's love's illusions I recall
I really don't know love at all

Tears and fears and feeling proud
To say "I love you" right out loud
Dreams and schemes and circus crowds
I've looked at life that way

But now old friends are acting strange
They shake their heads, they say I've changed
Well something's lost, but something's gained
In living every day

I've looked at life from both sides now
From win and lose, and still somehow
It's life's illusions I recall
I really don't know life at all

I've looked at life from both sides now
From up and down, and still somehow
It's life's illusions I recall
I really don't know life at all

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Chemotherapy delays and Genesis' "Undertow."

12/12/2021

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Season’s greetings to all.  I am wishing you good food.  And fun times.  And colourful lights.  And a Delta-and-Omicron-free frolic.  And. And. And…
 
My chemotherapy break soon comes to an end.  I will commence it again starting 11 January 2022.  This break was supposed to be only three months, but various delays caused it to be twice that long.  Although an MRI scan suggested no change at all in my disease, my cancer blood markers rose.  That lead to a more sensitive PET-CT scan, which indeed revealed some progression in the pelvis.  Thankfully, nothing yet seen in my lungs, liver, bone, or brain.
 
Before I could start chemotherapy, I needed a minor surgical procedure (otherwise the wound would not heal).  But COVID19 factors have meant operating rooms and minor procedures are backlogged.  I had to wait 2 months beyond the date I should have started chemo before I could get it done.  Then I need least two weeks recovery, a timeline that lands in Christmas week.  Because chemo units are on skeleton staffing during the holiday period, I must wait an additional three weeks to access a chemotherapy chair.  So I must wait, even though my cancer does not.  But there is a silver lining: I will be able to spend Christmas without the unlovely aspects of chemotherapy.
 
It is remarkable how much better one feels during a chemotherapy break.  The fatigue recedes, hair and eyebrows grow back, and skin returns to normal.  Food tastes better.  Nutritional status and blood parameters bounce back.  Those who saw me when I was on chemo previously are surprised by the improvement in my energy and appearance without it.  Most importantly, during a break, I no longer had to spend three days every two weeks in an untouchable state.  
 
All that health progress will be sacrificed when I start chemotherapy again.  Nevertheless, I welcome resuming it.  After all, I have no other treatment path besides chemo-for-life.  Recently I attended a webinar in which an expert oncologist said that the survival of those who take chemo breaks is the same as those who do not, and because the breaks are such a boon to general health, it is worth it to experience them even at the cost of some disease progression. 
 
I am chuffed to announce that I was the winning frontrunner in an election to join the provincial regulatory board for my profession of psychology, leading the pack with 166 of 249 votes cast (66%).   Serving on the Nova Scotia Board of Examiners in Psychology is absorbing and challenging work.  It allows me to keep my hand in professional matters and to work towards meaningful improvement in psychology practice standards.  So far, it has been the perfect segue away from working full time. 
 
Genesis is touring now.  I am an avid fan of this supergroup.  Today’s song is “Undertow,” from their 1979 album Then There Were Three…. I choose it for several reasons.  It seems appropriate for Christmastime with its images of snow and celebration.  It opens with images of comfort, intruded upon by thoughts of the cold homeless.  Then it pivots.  The song poses the question: If this were the last day of your life, what do you think you would do?  Although a tempting complacency flows beneath the surface of our pleasures, we must stop and reflect. There is a force - an undertow - that compels us to face the serious and emotionally overwhelming question of our own death.  But by speaking of the defiance of love in the face of that mortality, it nevertheless yields a Christmas message: love now, because life is short.
 
The curtains are drawn.
Now the fire warms the room. 
Meanwhile, outside
wind from the northeast chills the air.
It will soon be snowing out there.
 
And some there are
cold, they prepare for a sleepless night.
Maybe this will be their last fight.
 
But we're safe in each other's embrace.
All fears go as I look on your face.
 
Better think awhile
or I may never think again.

If this were the last day of your life, my friend,
tell me, what do you think you would do then?
 
Stand up to the blow that fate has struck upon you.
Make the most of all you still have coming to you.
Lay down on the ground and let the tears run from you.
Crying to the grass and trees and heaven finally on your knees.
 
Let me live again, let life come find me wanting.
Spring must strike again against the shield of winter.
Let me feel once more the arms of love surround me,
telling me the danger's past, I need not fear the icy blast again.
 
Laughter, music, and perfume linger here
And there, and there
wine flows from flask to glass and mouth
as it soothes, confusing our doubts.
And soon we feel
Why do a single thing today?
There's tomorrow sure as I'm here.
 
So the days they turn into years.
And still no tomorrow appears.
 
Better think awhile
or I may never think again.

If this were the last day of your life, my friend
tell me, what do you think you would do then?
 
Stand up to the blow that fate has struck upon you.
Make the most of all you still have coming to you.
Lay down on the ground and let the tears run from you.
Crying to the grass and trees and heaven finally on your knees.
 
Let me live again, let life come find me wanting.
Spring must strike again against the shield of winter.
Let me feel once more the arms of love surround me,
telling me the danger's past, I need not fear the icy blast again.
 

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Grieving Roger Hamilton and Seals & Crofts' "Wayland the Rabbit."

10/10/2021

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My beloved former family doctor Roger Hamilton has died of cancer.  
 
He was diagnosed at the same time my own disease recurred – devastating for me, and when I started this blog in earnest.  “Paint It Black” was my song then.  I learned later that just the day before his cancer surgery, he was advocating with resistant specialists on my behalf – one of his last acts as a physician before his disease forced him to leave medicine.  How that touches me.
 
I had worked with Roger for over a decade in my role as a child psychologist, so I already knew how dedicated, responsive, and patient-centred he was.  I also knew him as a neighbour – as a loving husband and devoted family man, as he lived only one door down from me.  
 
One of the most delightful things about Roger was how he spoke.  He had such a had a gentle voice, and when he spoke it was often filled with creative allusions.  Talking to him was like listening to a jazz artist scat singing, with brilliant flashes that gave glimpses into his marvellous mind.  
 
I have so many memories of him.  As described in The Cancer Olympics, I had served on a government committee that tried to standardize the referral process for family doctors when they suspect colorectal cancer.  Roger had been actively advocating for improved practice in this area himself for years.  I remember him calling me into his office one day, to show me on his screen the new EMR referral form our committee had developed.  He enthusiastically told me that he had referred two patients with that very form in the past week.  I wept with joy to see it, and Roger had tears in his eyes too.
 
One of my tenderest memories was of a time when we met by chance at our local post office.  He was just finishing his first bout of chemotherapy, and I was just starting mine.  We commiserated about how horrible chemo makes everything taste.  I turned to my post box, my back to him.  As he passed me on his way out the door, he briefly rested his hand between my shoulder blades.  Just a touch, but in it he communicated all his compassion, all his empathy, and his full understanding of our mutual suffering.  
 
In another poignant memory, I was with Roger and his cherished wife Wendy-Lee.  We were in their backyard sharing a cheese plate with a friend.  The friend asked him if he would go back to being a doctor once his treatments were over.  Roger replied wistfully, “I just hope to be Roger when my treatments are over.”  I realized his fear with a pang of recognition – that cancer will destroy our core identity just as it strips away our outward roles. 
 
In Roger’s honour, my song choice is Seals and Crofts’ gentle “Wayland the Rabbit,” from their 1975 album I’ll Play for You.  Better known for their big hits “Summer Breeze” and “Diamond Girl,” that duo wrote many more thoughtful songs.  This one was written by Seals for his actual father, whose name was actually Wayland.  This ballad shares images of an abundant Paradise.  It probes the mystery of suffering and death.  It conveys warmth for a sorrowful father.  (I listened to this song often after my mother died and my father was grieving her).  But the lyric that moves me most is the line, “I love you ‘cause you’re strong/ and I love you ‘cause you’re weak.”  When I think about Roger, I think about loving all of him - the strong wise gentle doctor and also the afflicted debilitated cancer patient.  How many of you have loved a person disabled by age, disease, or an accident of birth?   Cancer may render us into weakened shadows of our former selves – but we love and are loved regardless.  And Roger Hamilton was greatly loved.
 
As in the song, I wish Roger all the bounty of earth and Heaven.
 
Oh my Wayland,
there’s deer in the forest
and rivers are flowing
just for you.
 
Oh my father,
look down through the mountains and valleys 
the grain's in the silo.
All for you.
 
One fine morning, 
as Dad was walking, 
just to see what he could see,
he spied a little white rabbit. 
He was frozen as solid as he could be.
And Dad cried, 
as he knelt down beside him. 
He asked God, "How could you be so cruel?"
And his heart broke for the little white rabbit.
“But you see that the owl
Would never have been so gentle,
And God is so kind."
 
I love Wayland 'cause he's strong.
And I love him 'cause he's weak.
And the rabbit is running within him.
 
Oh my Wayland, 
the children are waiting 
and berries are ripe down below the hill.
Oh my father, 
the shadows of nighttime can't touch you.
Immortal, go quickly, 
be thankful the water is cool.
Drink your fill.
 
Today, as I walked 'long beside him,
I said, "Dad why do you look so sad?"
He turned, as he stood by the doorway.
He said, "Things are not like they used to be."
I smiled, as if I could teach him. 
I said, "Dad, it's mercy in disguise.
Once you told me of a little white rabbit, and 
you said that the owl would never have been so gentle,
and God’s been so kind."
 
And I love you 'cause you're strong. 
And I love you 'cause you're weak.
And the rabbit is running within me.
 
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Retirement, cancer, and Supertramp's "Goodbye Stranger."

7/10/2021

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Despite many cancer derailments, I managed to achieve something recently: I was able to retire on my natural retirement date, after 30 plus years in public health and education.  When I was first diagnosed 11 years ago I never thought I would live to see that day.  Even at this time last year, I was unsure I would make it.
 
Another aspect of this this retirement fills me with unchristian glee and satisfaction.  The Cancer Olympics described the College discipline meted out to Doctors One, Two, Three, and Four for their diagnostic negligence. When the CMPA settled with me in my concurrent malpractice action against the doctors, they acknowledged that the care I received was indefensible.  It took them seven years to admit it. They could not find any expert anywhere in the world able to justify any aspect of it.  In contrast, our five experts as well as the College of Physicians and Surgeons pointed out foundational practice flaws in all four.  Dr. One was a locum who did not believe she was responsible for the tests she herself ordered in that role.  Dr. Two (famous for scorning patients’ descriptions of their symptoms) wrote egregiously lightweight referral letters that left out vital information.  She also failed to communicate that she was quitting family medicine to become a hospitalist.  Dr. Three ignored positive cancer screening tests, taking no action at all over mine because “he forgot.”  General surgeon Dr. Four had her outpatient surgical triage done by her high-school-educated secretary instead of herself.  The theme underlying all those errors is a grotesque avoidance of responsibility.  Their grievously flawed approach to clinical work jeopardized far more patients than just me – I will be eternally glad that I called them out for their deep-rooted and contemptable conduct.
 
I experienced considerable income loss due to my cancer, and the CMPA was obliged to replace some of that in damages.  They tried to limit my settlement amount by saying I would be dead soon and therefore did not need the money.  If I died before retirement, my family would only get 60% of my pension.  However, living beyond retirement has allowed me to allocate 100% of my pension to my spouse Andrew when I die.  So by continuing to live and work against expectations, I was able to earn money in addition to the settlement amount, thereby frustrating the CMPA’s plan to see us suffer.  Heh Heh Heh.
 
One of the hardest aspects of cancer is that it took me away from the work and the people that I loved.  I feel cheated that I was unable to help those struggling through the pandemic.  I lost my chance to help schools cope, not to mention my private patients.  Yet I feel so grateful for the marvellous people I worked with over the decades, particularly in schools – it was an honour to be colleagues with those who commit to and cherish children and youth.  Their example of dedicated service - hard work driven by values, caring, and sheer grit – will inspire me always.   
 
Given my limited life span, my retirement has few goals.  I hope to continue with patient advocacy.  I spoke virtually at a BC health conference two months ago.  The CEO of the BC Health Authority was so shaken by my story that he invited me to speak to the provincial health board.  Zoom makes advocacy easier! 
 
My other modest goal this summer is to train my rescue cat to go camping with us in our little trailer.  So far so good. He likes being carried in a backpack (as per the photo) but is not so happy about the car or the leash.  I hope to have a chemo break at the end of July for 8 weeks or so, to implement my crazy kitty schemes. 
 
Today’s song is “Goodbye Stranger” from Supertramp’s 1979 iconic album Breakfast in America.  It was a big hit in my final year of High School (another big transition!).  Although the actual song is about an absconding womanizer, I choose it today because its snappy tune as well as its many retirement-related themes: moving on, gladness to have met wonderful people, and its no-regrets message.  The final guitar solo at the end of this song is one of the most famous in music history.
 
It was early morning yesterday
I was up before the dawn
And I really have enjoyed my stay
But I must be moving on
 
Like a king without a castle
Like a queen without a throne
I'm an early morning lover
And I must be moving on
 
Now I believe in what you say
Is the undisputed truth
But I have to have things my own way
To keep me in my youth
 
Like a ship without an anchor
Like a slave without a chain
Just the thought of those sweet ladies
Sends a shiver through my veins
 
And I will go on shining
Shining like brand new
I'll never look behind me
My troubles will be few
 
Goodbye stranger it's been nice
Hope you find your paradise
Tried to see your point of view
Hope your dreams will all come true
 
Goodbye Mary, goodbye Jane
Will we ever meet again?
Feel no sorrow, feel no shame
Come tomorrow, feel no pain
 
Sweet devotion (Goodbye Mary)
It's not for me (Goodbye Jane)
Just give me motion (Will we ever)
To set me free (Meet again)
In the land and the ocean (Feel no sorrow)
Far away (Feel no shame)
It's the life I've chosen (Come tomorrow)
Every day (Feel no pain)
So goodbye Mary (Goodbye, Mary)
So goodbye Jane (Goodbye, Jane)
Will we ever (Will we ever)
Meet again? (Meet again)
 
Now some they do and some they don't
And some you just can't tell
And some they will and some they won't
With some it's just as well
 
You can laugh at my behaviour
And that'll never bother me
Say the devil is my saviour
But I don't pay no heed
And I will go on shining
Shining like brand new
I'll never look behind me
My troubles will be few
 
Goodbye stranger, it's been nice
Hope you find your paradise
Tried to see your point of view
Hope your dreams will all come true
 
Goodbye Mary, goodbye Jane
Will we ever meet again?
Feel no sorrow, feel no shame
Come tomorrow, feel no pain
 
Sweet devotion (Goodbye, Mary)
It's not for me (Goodbye, Jane)
Just give me motion (Will we ever)
To set me free (Meet again)
In the land and the ocean (Feel no sorrow)
Far away (Feel no shame)
It's the life I've chosen (Come tomorrow)
Every day (Feel no pain)
So now I'm leaving (Goodbye, Mary)
Got to go (Goodbye, Jane)
Hit the road (Will we ever)
I'll say it once again (Meet again)
Oh, yes, I'm leaving (Feel so sorrow)
Got to go (Feel no shame)
Got to go (Come tomorrow)
I'm sorry, I must dash (Feel no pain)
So goodbye Mary (Goodbye, Mary)
So goodbye Jane (Goodbye, Jane)
Will we ever (Will we ever)
Meet again? (Meet again)
 
Go and believe it
I've got to go
 
 
 
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Relay for Life and The Pretenders' "Back on the Chain Gang."

5/29/2021

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It is that time again.
 
Canadian Cancer Society's Relay for Life 2021 time.
 
This year RFL is online again.  The virtual ceremony went quite well last year.  To donate to my Relay, click here.
 
Recently, I had my 11-year cancerversary.  Can you believe it has been an entire decade since the events of The Cancer Olympics?  Since those days of our advocacy, around 100 Nova Scotians a year have access to FOLFOX chemotherapy as their best chance at cure.  Think of it: over 1100 people possibly saved due to all our work getting that drug added to the provincial formulary.
 
It is very uncommon to live 11 years with what proved to be stage IV colorectal cancer.  (Average life expectancy is only two years).  So I continue to press on with whatever I can do to support patients and families.  For example, this week I am presenting as a panelist at the National Health Leadership Conference about improving error and apology practice in the aftermath of serious preventable medical harm.  After a misread CT took away the last of my life chances, I tried to improve radiology practice but could not make a dent.  However, I was able to argue for improved error and apology training in the NSHA, and they built me into a new teaching video on the subject.
 
I am in the final weeks of my working life.  I retire from the Annapolis Valley Regional Centre for Education on 30 June.  Many considered me crazy for returning to full time work in March after my January surgery.  As strange as it may be, I really wanted to have one transition in my life to happen naturally, not torn away from me by cancer.  To me it is an achievement, a little smugness I hug to myself – I get to leave on my own terms.
 
Today’s song is dedicated to my friend Lila Hope-Simpson, who died of stage IV breast cancer last month.  Her cancer recurred after 10 years remission.  How can I describe her?  She was a cherished leader and visionary in childcare in our region, as well as an accomplished author.  The most superlative review of The Cancer Olympics, written for the Halifax Chronicle Herald, was hers.  Lila and I would discuss our attitude to our impending deaths.  She was remarkably clear-eyed about it, seeing past the fear to the solace of being with family at the end.  How she comforted me.
 
The song I choose is the 1982 single “Back on the Chain Gang” by The Pretenders, found on their 1984 album Learning to Crawl. Lead singer Chrissie Hynde wrote it after a member of her band died suddenly of a drug overdose, followed by another bandmate’s similar death a few months later.  I choose it because it comingles grief with a message of endurance.  Along with its nostalgia, the song conveys resistance to oppression – an answering anthem in this time when the right wing seems determined to undermine basic civil rights.  Lila would have nodded and smiled.
 
 
I found a picture of you, 
What hijacked my world that night
To a place in the past
We've been cast out of 
Now we're back in the fight
We're back on the train
Oh, back on the chain gang

A circumstance beyond our control,
The phone, the tv, and the news of the world
Got in the house like a pigeon from hell
Threw sand in our eyes and descended like flies
Put us back on the train
Oh, back on the chain gang

The powers that be
That force us to live like we do
Bring me to my knees
When I see what they've done to you
But I'll die as I stand here today
Knowing that deep in my heart
They'll fall to ruin one day
For making us part

I found a picture of you 
Those were the happiest days of my life
Like a break in the battle was your part 
In the wretched life of a lonely heart
Now we're back on the train
Oh, back on the chain gang
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Chemotherapy resumes and Beck's "Chemical."

4/7/2021

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​I have made it over a few cancer hurdles in the last month or two.  First, I was at last able to get the surgery which converted my temporary ileostomy to a version of a permanent colostomy.  With mine, I retain my neorectum and sigmoid colon (they were too fused with other organs to remove – a consequence of radiation 10 years ago).  Those guts have been rerouted to a tiny external hole, which allows me to introduce soothing medications to that distal end, which is so painfully strictured.  My large intestine is back in use, resulting in perfect continuity, better nutrition, and less inflammation. This arrangement is vastly easier and more comfortable than a temporary ileostomy, and 100% easier than the low anterior resection syndrome that torments those who undergo the usual ileostomy reversal.  
 
Second, I am back to work!  Most of my work can be done from home, although I will certainly be going to schools as well.  I spend lots of time in phone calls and zoom meetings, and I am still working on perfecting an online project regarding social-emotional lesson plans for students.  So far, so good.  I will be retiring as of 30 June, so this is my last kick at the work can.
 
Some of you saw me on CTV’s W5 on 14 March 2021.  The link to the 22-minute deep dive show is here.  They did an expose of the Canadian Medical Protective Association, an organization that is subsidized by taxpayers to defend doctors to the tune of $540M annually.  They hold a surplus of 5 Billion dollars.  Yes, you read that right – that is billions with a “B.”  Did you know you were paying for that?  
 
I resumed chemotherapy this week.  The same cocktail I was on before.  Once again, medical bumbling continues – the requisition for my pre-treatment MRI was sent to the wrong hospital.  This is the third time that has happened.  I was unwilling to delay treatment until it could be rescheduled, and insisted I start back on chemotherapy.  Good thing to, as my cancer blood markers have risen recently.
 
Lest anyone should think I am musically stuck in the 70s, today’s song “Chemical” is from Beck’s 2020 album Hyperspace.  Done in collaboration with Pharrell Williams (of “Happy” fame), this album interestingly integrates NASA data from various space probes into surreal videos.   Using Artificial Intelligence, they paired their songs with closeup images of various celestial bodies.  This song illustrates Saturn and its rings (clicking on the song title will take you to the video).  Although this song is about the vicissitudes of falling in and out of love, I choose it because chemotherapy is indeed a chemical which I must “start again.”
 
You say that love is a chemical
Anodyne to the soul
What I really, really want to know
Is if my mind's in control
 
I'm so high
Love is a chemical
I'm so high
Love is a chemical
Start it, start it again
 
A random thought, a memory
A tidal wave, a melody, I'm on my knees
A sudden change in everything
Don't know when I was leaving feeling well and free
You find love’s just a fantasy
Beautiful and ugly as a life can be
And I don't lose any sleep honestly
 
I'm so high
Love is a chemical
I'm so high
Love is a chemical
Start it, start it again

I can feel it minute by minute by the day
I don't want it running all night this way
Why you got to get it on my mind this way? 
 
Saying what I feel
What can I tell you? Don't know
Why you have to be like that?
Alligator teardrops fall
Love is a, love is a chemical
Burning wears off like a chemical
I don't need anyone to turn me on
I don't need anyone, no
 
And when the feeling is over
There's no explanation
Shock to the system
Infatuation
Shaped like a flower
Strange affirmation
Crown of illusion
Start it, start it again
 
(I’m) Saying what I feel
(So high) What can I tell you? Don't know
(Love) Why you have to be like that?
(Is a chemical) Alligator teardrops fall


Love is a, love is a chemical
(So high) Burning wears off like a chemical
(Love) I don't need anyone to turn me on
(Is a chemical) I don't need anyone, no

Start it, start it again
 
 
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    Robin McGee: psychologist, author,
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