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 health care – 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.

This story was published by The Cancer Olympics on July 12, 2023. It is republished with permission.