The Cancer Olympics - News/Blog

Into The West

6/9/2024

Dear followers of The Cancer Olympics,

This is Robin’s son and husband (Austin & Andrew Hurst), posting on her behalf. After 14 years of incredible strength and resilience in the face of her diagnosis, it is with great sadness that we inform you that Robin has reached the end of her journey. She will be dearly missed. She was one of the extraordinary people who applied themselves constantly to making the world a better place and invariably succeeded with each of her many campaigns, making lasting friendships as she went.

In the days before her passing she wrote out her final blog post, which we have transcribed below. We hope you understand just how much this community meant to her, and how much she (and we) appreciated your continued friendship, kindness, and support through the years.

We will share the details of her Celebration of Life memorial here (as well as through the White Family Funeral Home website) in the coming weeks.

Dear RCO,

Today will be the last post. I am in hospital. My life is over. I can no longer eat, walk, or breathe without oxygen. I accept that today is quite possibly my last. Thank you for your support of The Cancer Olympics, I have cherished you all and your immense support through this incredible journey. I could not have asked for a better community of friends and family.

Today’s song is 2003’s “Into The West” by Annie Lennox, famously used for the ending credits in Lord of the Rings: Return of the King. LOTR! Of course. Lennox’s crystal voice conveys the majesty of the final voyage.

Lay down
Your sweet and weary head
The night is falling
You have come to journey's end
Sleep now
And dream of the ones who came before
They are calling
From across the distant shore

Why do you weep?
What are these tears upon your face?
Soon you will see
All of your fears will pass away
Safe in my arms
You're only sleeping

What can you see
On the horizon?
Why do the white gulls call?
Across the sea
A pale moon rises
The ships have come to carry you home

And all will turn
To silver glass
A light on the water
All Souls pass

Hope fades
Into the world of night
Through shadows falling
Out of memory and time
Don't say
We have come now to the end
White shores are calling
You and I will meet again
And you'll be here in my arms
Just sleeping

And all will turn
To silver glass
A light on the water
Grey ships pass
Into the West

Cancer treatment ends and Death Cab for Cutie's "What Sarah said."

4/30/2024

It is my sad duty to share that the oncologists are telling me I am out of cards.  They are recommending no further treatment.  Scans show the disease has escalated, appearing in my liver and both lungs now after 14 years.  My nine lives are up.

When I asked about my timeline, they said if I catch Covid or some other virus, my lifespan can be measured in weeks.  If I avoid that, it will be months.  She said, “You won’t see Christmas.”

So all my efforts now on must be directed to palliative care.   I must discover that magic spot between pain control and sedation.  Some of the drugs are so strong I fall unconscious for 1-4 hours each day.  My physical disability has likewise increased.  I have lost the use of my right foot, so I must use a rollator to get around.  To avoid further bowel obstructions, I am on a low fibre, low residue diet.  I am supposed to eat several small meals a day, which is more difficult than it sounds.

My disability creates more work for Andrew and it is starting to wear him down.  We could use help with so many things: yard work, house chores, and companionship for me while he is busy taking care of other things. (He is afraid of me falling when I am home alone -it has happened).  Thank goodness a robot mows our lawn!

People ask me if I have bucket list plans.  My remaining ones are very modest: can I visit with my family? Can I go on the camping trips we booked?  Meeting those goals will bring enough contentment.

Now does not seem like a bad time to leave the world.  Since my initial diagnosis I have accomplished a lot: I finished raising my child, concluded a satisfying career, wrote The Cancer Olympics, camped across Canada and traveled to Alaska, Costa Rica, Scotland, Ireland, France and Italy.  I have done the big things, so what is left now is to enjoy small things in the time remaining.

Today’s song is “What Sarah said” from Death Cab for Cuties 2005 album Plans.  The song is about the perspectives of someone watching a loved one die, and the loved one watching that happen.  Its muted message to invest in life and love while one can is underscored by the hospital imagery and melancholy voice.  In marriage, our vows about “till death do us part” imply another commitment: One of you must watch the other die.

I am not actively dying now.  I still get up every day.  I have writing plans and objectives as goals to keep me focused.  And, truth be told, I was so tired of treatment that stopping it feels like a reprieve.  Nevertheless, the next few months would also be the time for friends to visit or call, for those looking to say goodbye.

And it came to me then
That every plan
Is a tiny prayer to father time

As I stared at my shoes
In the ICU
That reeked of piss and 409

And I rationed my breaths
As I said to myself
That I'd already taken too much today

As each descending peak
On the LCD
Took you a little farther away from me
Away from me

Amongst the vending machines
And year-old magazines
In a place where we only say goodbye

It stung like a violent wind
That our memories depend
On a faulty camera in our minds

And I knew that you were truth
I would rather lose
Than to have never lain beside at all

And I looked around
At all the eyes on the ground
As the TV entertained itself

'Cause there's no comfort in the waiting room
Just nervous paces bracing for bad news
And then the nurse comes round
And everyone lifts their heads
But I'm thinking of what Sarah said

That love is watching someone die

So who's gonna watch you die?
So who's gonna watch you die?
So who's gonna watch you die?

Cancer disability and Taylor Swift's "This is me trying."

3/10/2024

My struggles continue.  My chemo sessions are now one month apart, instead of every two weeks, to allow my bone marrow and neutrophils to bounce back.  This is better for quality of life, but we do not know yet if it gives me cancer control.

The week after chemo is euphemistically referred to in my house as a “barf fest.”  My surgeon explained I have multiple “hourglasses” within my small bowel that cause the vomiting.  Food has a hard time getting through, and sometimes throws its arms in the air as it gives up.  The many pain medications I am on also slow the gut and can make things worse.  It is a celebration if I can keep down two meals a day.

My pain has increased significantly, as has my disability.  I need a rollator to get around now, because foot drop has set in in earnest.  When I go up stairs, I must use my arms to pull myself up using the balustrades.  No one tells you how much work it is to be physically disabled, for both the patient and the caregiver.  I distrust my ability to drive (it is my right foot that is compromised), so Andrew must drive me everywhere now.  There are so many appointments attached to it: assessments for foot braces and pain medications and physiotherapy. The endlessness of the effort is made more sad by the recognition that each lost ability can never come back, and indeed will become much worse as I deteriorate further.

One night I experienced pain in my affected leg that was off the charts.  It went beyond any pain experience I have ever had – worse than childbirth, surgery, bowel obstructions.  The next morning I broke down and asked the palliative team to give me methadone, for which they had been advocating for months.  Now it becomes another burdensome task to find the dosage that works without massive sedation.

Normally I try to vary the artists I choose to reflect my experiences.  My last blog featured Taylor Swift’s “New Year’s Day.”  Swift is so prolific and perfect in her introspective lyricism that I must choose her again.  Today’s song is “This is me trying” from her eighth studio album, Folklore (2020).  The album won Album of the Year at the 2021’s Grammy Awards, making Swift the first woman in history to win the honor three times. “This is me trying” is an emotionally haunting song about struggle and relapse, with Swift’s ghostly voice evoking sorrow and regret.  Regarding the song's metaphor set around curve and sphere, one critic commented: "Taylor could have invented geometry, but Euclid couldn't have written this song."  I choose it today to give voice to all who keep trying, like me, when things are hard: all those with disabilities, with mental health problems, with addictions, with failures, and with lost relationships.  We are all trying.

I've been having a hard time adjusting
I had the shiniest wheels, now they're rusting
I didn't know if you'd care if I came back
I have a lot of regrets about that
Pulled the car off the road to the lookout
Could've followed my fears all the way down
And maybe I don't quite know what to say
But I'm here in your doorway

I just wanted you to know
That this is me trying
I just wanted you to know
That this is me trying

They told me all of my cages were mental
So I got wasted like all my potential
And my words shoot to kill when I'm mad
I have a lot of regrets about that
I was so ahead of the curve, the curve became a sphere
Fell behind on my classmates, and I ended up here
Pouring out my heart to a stranger
But I didn't pour the whiskey

I just wanted you to know
That this is me trying
I just wanted you to know
That this is me trying
At least I'm trying

And it's hard to be at a party when I feel like an open wound
It's hard to be anywhere these days when all I want is you
You're a flashback in a film reel on the one screen in my town

And I just wanted you to know
That this is me trying
(And maybe I don't quite know what to say)
I just wanted you to know
That this is me trying
At least I'm trying

Cancer, hospital, and Taylor Swift's "New Year's Day."

12/19/2023

We have had a wild ride recently.  I was finally able to get cancer treatment in July, after a progression evident in March. By that time, my tumour was an oncoming freight train.  The disease had infiltrated my sacral spine, crushing the nerve roots needed to control my right leg.

As cancers develop, they mutate.  If the mutations are known, sometimes there is a drug that can treat them.  I paid $3K to get my tumour tissue analyzed for 500 different possible mutations.  One of my mutations (called FANCL) also frequently occurs in prostate and ovarian cancer.  Those populations can use the oral cancer drug Olaparib.  But because provincial formularies are based on body part of origin, and not on mutational drivers, I cannot access it under the NS formulary.

Most Canadians don’t know this, but east of Manitoba, no oral cancer drugs are covered at all.  Some of them come with staggering price tags: Olaparib costs $17,000 per bottle in the US.  I stumbled upon a pharmacy in Bangladesh that would sell a generic version to me for $500 USD a bottle.  To be able to take it, I needed to also endure a chemotherapy with toxic elements, as this was the only way the province would let an oncologist see me throughout the treatment.

And guess what? Science works! My cancer blood marker dropped significantly, and the tumour growth ground to a halt.  Scans showed it has shrunk and stabilized the cancer in my sacrum.  I shared my success with it with The Toronto Star, and through them with CBC.

But Olaparib has an insidious side.  The vast majority of those who take it develop anemia, and those who take it for 2 years are at high risk for leukemia.  I found I had a bowel obstruction virtually every cycle, which led to extreme abdominal pain and vomiting.

In early December Andrew thought I was exceptionally weak during one of my obstruction episodes.  He called Hope Gillis, a nurse and friend, to come over to convince me I needed to go to hospital.  She did, and with their support I was seen at the ER and admitted to Valley Regional.  I stayed there for 10 days. I had 4 different bowel obstructions! And a raging infection, and not one single neutrophil anywhere in my body.  They gave me IV antibiotics and fluids.  A shout out is needed to the ER nursing staff.  They were unfailingly kind; but I was most impressed by how much they seemed to like and support each other.  Sometimes at night I would awaken to hear them laughing together.  It was sweet music to go back to sleep to.

All of this was exhausting beyond words for Andrew, who had to hold down the fort at home, attend to me in hospital, and juggle his own appointments.  Austin came home to help as he could.  Gratitude to those folks who dropped off some casseroles – they were like gold.

It is hard to be with someone who throws up all night, hard to clean up after them, and harder still to have them in hospital.  And now that I am home again and able to eat, Andrew is watchful for similar signs of collapse.  There are times when poor Andrew is understandably exasperated by the messiness of my symptoms.  I often feel that way about them too; I just cannot seem to stop them.

Megastar Taylor Swift has been flying through the Heavens lately.  I had ignored her for many years, assuming she was just a girlie dancer.  Then, one day while I was watering the plants, her song “Ronan” came on, about a mother mourning the death of a four-year-old boy.  The song seized me by the throat and spiked my eyes with tears.  I dissolved into a nearby chair, thinking, “I have underestimated her.”

So I dived into her discography, and learned what a powerhouse of a singer/songwriter she really is.  She rivals Dylan, and indeed exceeds him in how she captures interior experiences. Swift’s accolades include 12 Grammys and 117 Guinness World Records!  Her productivity, use of rhythm, and clever lyrics are astonishing.  It is as if every song she does becomes an instant ear worm.  I particularly enjoy her sense of humour (watch her video “The Man” for a hysterically funny treat).

Taylor Swift has a very serious side too.  Today I choose her song “New Year’s Day,” from her 2017 album Reputation. It is not only seasonally appropriate, but it touches on my own struggles in a marriage doomed by cancer.  The song describes the day after a successful New Year’s Eve party, in which a couple must do the mundane clearing up.  The singer appeals to the partner that she is in for the times that do not sparkle, that take work and patience, and urges the partner to remember the joys of their past when confronted with an unlovely present and a troubled future.  Don’t read the last page.

There's glitter on the floor after the party
Girls carrying their shoes down in the lobby
Candle wax and Polaroids on the hardwood floor
You and me from the night before, but

Don't read the last page
But I stay when you're lost, and I'm scared
And you're turning away
I want your midnights
But I'll be cleaning up bottles with you on New Year's Day

You squeeze my hand three times in the back of the taxi
I can tell that it's gonna be a long road
I'll be there if you're the toast of the town, babe
Or if you strike out and you're crawling home

Don't read the last page
But I stay when it's hard, or it's wrong
Or we're making mistakes
I want your midnights
But I'll be cleaning up bottles with you on New Year's Day

Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
And I will hold on to you

Please don't ever become a stranger
Whose laugh I could recognize anywhere
Please don't ever become a stranger
Whose laugh I could recognize anywhere

There's glitter on the floor after the party
Girls carrying their shoes down in the lobby
Candle wax and Polaroids on the hardwood floor
You and me forevermore

Don't read the last page
But I stay when it's hard, or it's wrong
Or we're making mistakes
I want your midnights
But I'll be cleaning up bottles with you on New Year's Day

Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
Hold on to the memories, they will hold on to you
And I will hold on to you

Please don't ever become a stranger
(To the memories, they will hold on to you)
Whose laugh I could recognize anywhere
(Hold on to the memories, they will hold on to you)
Please don't ever become a stranger
(Hold on to the memories, they will hold on to you)
Whose laugh I could recognize anywhere
(I will hold on to you)

Cancer struggles and Sinead O'Connor's "He moved through the fair."

9/26/2023

I have been getting emails from some of you wondering how I am doing.  This always serves as an indication to me that I am overdue for a blog post.

I was finally able to get started on a chemo protocol in late July. It is comprised of four drugs - two I have had before (irinotecan and 5 FU) and 2 new ones (Olaparib and Avastin). This protocol has proved tolerable but fragile.  The drugs involved are known to cause anemia and raise blood pressure. Every cycle has been compromised by some issue – blood pressure too high, recurrent UTIs, or blood counts that are too low.   I had my last chemo cancelled for these reasons.  I have never had such problems before.

I cannot say if I am better (a scan down the road will tell), but treatment did seem to stop the excruciating sciatica-like pain from developing further.  I started heavier pain medications (nortriptyline and gabapentin) around that time, so it is possible that the pain is merely masked.   My right leg and foot remain functionally compromised.  It is a sensation like the foot is both sprained and inside a downhill ski boot.  It is painful and stiff.  However, it has not developed “foot drop” yet, a condition in which one cannot lift the foot at all.  Walking is quite effortful, as now both neuropathic legs shout with pain when I go any distance or go uphill.

One bizarre and unexpected side effect of these treatments – Cueball-hood!  The day after my second treatment, I went into the shower with a full head of hair and came out completely bald.  When I touched my hair, it came out in huge handfuls – all of it, sparing only my eyelashes and eyebrows. The photo shows my surprise. Unlike previous times when thinning hair made me shave it, my head is now smoothly bald all over with no hint of growth after many weeks.  Because I cannot find my old headscarves, I had to start all over with new ones.  Thanks to those out there who donated some.  My role as Lex Luthor awaits!

We managed a trailer getaway to the Gaspe region.  Alas, torrential rains everyday but one meant we could not really see the natural beauty of the place.  We tried Keji for a few days with the same result.  My Ottawa trip fared better.  My six-minute talk at the Canadian Medical Association went well.  I raised the point that Canada is the only nation with socialized medicine that does not have a national pharmacare program (much applause) and that it is impossible to remove emotion from the debate over public versus private healthcare (even more applause).   Many came up to me later to praise how it went.  The summit had many great ideas on how to address the physician shortages.  I hope something good comes out of it.  I was able to visit my family, and that was very healing.

Recently we have lost many beloved music artists.  The famous and adored Robbie Robertson, formerly of The Band, died last month.  Nova Scotians lost our hero Bruce Guthro of Cape Breton.  Ireland and the world mourned the striking Sinead O’Connor.  The latter was a visionary, seeing the sexual corruption at the heart of the Catholic Church long before the rest of us did.  When she ripped up that picture of the Pope on SNL, I saw it live.  For her protest she was ostracized and essentially lost her singing career.  She carried on nonetheless, like cancer patients must do.

Because each one of these artists made a claim on my heart, my song choice was a difficult one.  After much musing, I have chosen an old Irish ballad “He moved through the fair” sung by Sinead O’Connor.   Although it is not explicit, Irish listeners to this haunting song would recognize that the lover has died by the final verse.  I choose it today for this intimation of mortality.  If you have one Celtic drop of blood in your ancestry, you will be greatly moved by it; not only for its poignant lyrics, but for the otherworldly sound of Sinead’s unparalleled voice. It gives me chills every time I hear it.

My own love said to me
"My mother won't mind
And my father won't slight you
For your lack of kind"

He went away from me
And this he did say
"It will not be long, love
'Til our wedding day"

He went away from me
And he moved through the fair
And slowly I watched him
Move here and move there

He went his way homeward
With one star awake
As the swan in the evening
Moves over the lake

I dreamed last night
That my own love came in
He came in so sweetly
His feet made no din

He stepped up beside me
And this he did say
"It will not be long, love
'Til our wedding day"

Waiting for treatment and U2's "With or without you."

7/12/2023

It is time to update my situation.  The cancer has moved into my pelvic bone. As many know, I underwent pelvic radiation during the winter.  Although it helped to control the growth of two lesions, it did nothing for one in my sacrum.  My June scan showed that the bone lesion has quadrupled in volume since March.  It is now crushing several key nerve roots.  This has resulted in a significant increase in pain and pressure – including a sciatica that goes down my leg all the way to my foot.  The pain can be excruciating at times.

Although my providers have had that bad scan result for over a month, I cannot seem to access intervention.  I saw my surgical oncologist two weeks ago. He said I need to start systemic chemotherapy urgently – in his view, this is a five-alarm fire.  Very serious disability can result from such a sacral bone met.  But as always, there is somehow a disjuncture in communication.  My medical oncologist says I can wait for therapy for after I have consulted with a radiation oncologist – but she has said that I cannot get radiation until six months from the date of my last radiation.  For me, that would be the end of August!  Knowing I cannot wait that long for care given the aggressive nature of this bone met, I have emailed, and called the medical oncologist on the Cancer Centre.  I have emailed all three providers asking them to come to consensus.  What have I heard? Crickets.

The med onc said by email he would “get back to me.”  That was a month ago.  He called Sunday saying again that he would “get back to me” – still nothing,

Without a start date, we cannot plan our lives.  We cannot plan outings or day trips, let alone any trailer time.  The palliative team has tried to help with my pain by tweaking various drugs.  Those drugs have their own side effects.  One drug (dexamethasone) has been somewhat amusing – it helps with inflammation, but I also cannot sleep on it, reminding me of Robin William’s description of his mind on cocaine: (“Redundant redundant redundant...”).  The palliative folks are weaning me off of it.

I have one trip I must take.  I am speaking in person at the Canadian Medical Association Summit in Ottawa on 18 August.  God willing, I will be able to spend some time with my siblings there afterward.

The CMA want me to talk about privatization of healthcare – they say they want me to tell my COVID eyesight story.  Me, I would rather talk about the private cost demands of cancer care.  Most Canadians assume cancer care is completely covered, but it has deep abysses that only the wealthy can access.  It seems that only rich Canadians can survive cancer.  Grrrrrrr.

Today’s song is by supergroup U2 from their 1987 album The Joshua Tree. “With or without you.” This powerful song topped the charts worldwide, and it has been on several lists of the greatest songs ever made.  It opens with a heartbeat bass line.  Bono begins the song slowly, within his lower register, developing under The Edge’s sonic guitar soundscape, building until it mounts to his open-throated cry of anguish.  Although it is commonly interpreted to be about a troubled love relationship, I choose it today for how it matches my own frustration. I literally cannot live without chemotherapy.  As much as I dislike it, I must have it.  And the waiting for it is as tormenting as the raw emotion in this song conveys.

See the stone set in your eyes
See the thorn twist in your side
I'll wait for you.

Sleight of hand and twist of fate
On a bed of nails, she makes me wait
And I wait without you.

With or without you
With or without you

Through the storm, we reach the shore
You give it all but I want more
And I'm waiting for you.

With or without you
With or without you, ah, ah
I can't live
With or without you.

And you give yourself away
And you give yourself away
And you give
And you give
And you give yourself away.

My hands are tied
My body bruised, she got me with
Nothing to win and
Nothing left to lose.

And you give yourself away
And you give yourself away
And you give
And you give
And you give yourself away.

With or without you
With or without you, oh
I can't live
With or without you
Oh, oh
Oh, oh
With or without you
With or without you, oh
I can't live
With or without you
With or without you.

Relay for Life and Gordon Lightfoot's "Wherefore and why."

5/24/2023

It is that time again, dear friends, for me to ask for donations to my Relay for Life.  This year I spent a month in residences paid for by the Canadian Cancer Society that allowed me to access radiation treatments.  Rural Nova Scotians truly rely on the Lodge that Gives and other CCS programs, and it means much to me to give back.  To donate, click here.

A reminder too of my promise: if anyone donates $100 or more, I will buy a luminary in honour of or in memory of your loved one.

I do not know yet if radiation has helped me.  I have a scan in June and that will tell the tale.  I have no “next steps” in the formulary, so my next effort will likely be experimental chemo.   I just passed my cancerversary; remarkably, I have lived 13 years with stage IV cancer.

Canadians are greatly saddened by the passing of one of our musical greats, the gifted and mellifluous singer-songwriter Gordon Lightfoot.  He was a great favourite of mine, and he has made his appearance in this blog several times.  I evoked “If you could read my mind” as my thoughts about Dr. Two from my book The Cancer Olympics.  Dr. Two was my family doctor for 15 years before she quit family medicine to become a hospitalist.   And after I recovered from my massive Toronto surgery, I chose “Your love’s return” to express my sense of health homecoming.  Today I will choose his 1968 song “Wherefore and why.”  It is not my favourite Lightfoot song (which is the perfectly constructed and delivered “Beautiful” – I remember slow dancing to it with my Dad at my wedding 33 years ago).  But nevertheless, this song is an optimistic appeal to consider what is vital in life:  rapture in nature and and loving relationships.  It pairs well with Relay.

When I woke this morning,
Something inside of me
told me this would be my day.
I heard the morning train,
I felt the wind change,
Too many times I'm on my way.

Come on sunshine, what can you show me?
Where can you take me to make me understand?
The wind can shake me, brothers forsake me
The rain can touch me, but can I touch the rain?

And then I saw the sunrise above a cotton sky
like a candy cane delight
I saw the milkman, I saw the business man,
I saw the only road in sight
Then I got to thinkin' what makes you want to go,
to know the wherefore and the why?
So many times now, Oh Lord I can't remember,
if it's September or July

Come on sunshine, what can you show me?
Where can you take me to make me understand?
The wind can shake me, brothers forsake me
The rain can touch me, but can I touch the rain?

Then all at once it came to me,
I saw the wherefore,
and you can see it if you try
It's in the sun above,
it's in the ones you love,
you’ll never know the reason why

Come on sunshine, what can you show me?
Where can you take me to make me understand?
The wind can shake me, brothers forsake me
The rain can touch me, but can I touch the rain?

So much to lose, so much to gain

Radiation, cancer loss, and Sarah McLachlan's "I will remember you."

4/1/2023

Last week I lost another dear friend to cancer.

Anamarija Wagner and I met when we both gave talks on our cancer experience to medical students.  We became close, spending time together and conversing online.  We went to a few Relay for Life events together.  Once, we were walking the crowded survivors lap around the Relay track trailing festive balloons.  Our balloons gravitated to each other and wrapped around each other.  Ana laughingly said it was a sign that our lives will be entwined.

Like me (see The Cancer Olympics ), Ana had an unusual diagnostic story.  After months of runaround, her breast cancer ultimately got detected due to... her dog.  Her little boxer would bark wildly at her left breast.  A doctor was on the verge of dismissing her over the phone again when he heard the dog in the background.  Shaken and surprised, the doctor was moved to allow Ana to come in for the tests that ultimately revealed her malignancy.

Shortly after I recurred, Ana was diagnosed with a rare gynecological cancer. The chemo and radiations she tried either failed or created serious reactions.  She moved to Texas to be closer to her son John and to try what US healthcare could offer.  After further treatment proved futile, she moved from hospital back into her son’s home.  Her passing was described as very peaceful.

Ana had what the old folks would call “second sight.”  She had several near-death experiences over her lifetime, and possessed remarkable intuition regarding other people’s futures.  She prophesized that I might live longer than I expect.  Ana did not fear death, and her openness about that was a comfort to me.

After many false starts I was able to start radiation in January.  We had planned it to avoid the region of my pelvis where I had that delicate Toronto reconstruction surgery.  Unfortunately, recent scan results showed progression in the untreated area, whereas the treated sections were stable.  Consequently, I am now back in Halifax for another two weeks, this time to radiate the untreated area.  No one can tell me the risk to the repair from radiation, the situation is so uncommon.

Andrew and I rescheduled a trip to Costa Rica a week after radiation ends.  It is our first effort at travel since lockdown.  We need a place where we can rest and maybe have the odd daytrip.  We did not have it in us to plan something with many moving parts.  I will be tired from treatment, and Andrew is tired from constantly having to hold down the fort.

Today’s song is dedicated to Anamarija.  We both loved Canadian music, and so my choice is for singer/songwriter Sarah McLachlan’s ballad “I will remember you.”  Released in 1995 for a movie soundtrack, McLachlan has several versions of it.  The live version went gold in the US and earned McLachlan her second Grammy Award for Best Female Pop Vocal Performance in 2000.   Her haunting delivery and touching lyrics remind us that life is short, and relationships are everything.

I will remember you, will you remember me?
Don't let your life pass you by
Weep not for the memories

Remember the good times that we had?
I let them slip away from us when things got bad
How clearly I first saw you smilin' in the sun
Want to feel your warmth upon me
I want to be the one

I will remember you, will you remember me?
Don't let your life pass you by
Weep not for the memories

I'm so tired but I can't sleep
Standin' on the edge of something much too deep
It's funny how we feel so much but we cannot say a word
We are screaming inside, but we can't be heard

I will remember you, will you remember me?
Don't let your life pass you by
Weep not for the memories

So afraid to love you
But more afraid to lose
Clinging to a past that doesn't let me choose
Once there was a darkness
Deep and endless night
You gave me everything you had, oh you gave me life

I will remember you, will you remember me?
Don't let your life pass you by
Weep not for the memories

I will remember you, will you remember me?
Don't let your life pass you by
Weep not for the memories

Weep not for the memories.

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

12/21/2022

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

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

9/28/2022

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