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
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
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