I am currently on my 5th infusion of indefinite chemotherapy. It is no picnic. But this regimen is much more tolerable than ones I have been on previously. No mouth sores. No diarrhea. No horrific rash. The gradual hair loss has just started, and the fatigue is there. However, I am able to walk and eat. These are not little accomplishments for someone on chemotherapy.
My greatest struggle is pain. The cancer pain is pressure, but the neorectal stricture pain is burning torture.
Very recently, I was able to talk to surgeons about what is possible. Sadly, my neorectum is fused to the posterior vagina at the very base. Unfortunately, because of this fusion, to risk repair of the stricture is to risk a total pelvic exteneration – losing rectum, anus, vagina, bladder, urethra - all the organs taken out as block. Although the procedure would extend my life, the morbidity of such an extensive surgery could significantly reduce the quality of that remaining life. Moreover, due to the cancer in my pelvic sidewall, it cannot cure me. So I must somehow endure the stricture pain.
Which leaves chemotherapy for life as my remaining option. A recent MRI, done to check for the effectiveness of the systemic treatment, showed an excellent response – a 75% reduction in tumour volume after 5 infusions. The cancer has retreated somewhat from the urethra. So right now, this seems to be the path towards saving the urology repair I moved Heaven and Earth to achieve last year.
Psychologically, I have been all over the place. I do not fear death. But like most of us, I fear great suffering. The months I went without any surgical opinion and without knowing if the cancer was growing or shrinking were very bleak. All scenarios go through your mind when the pain escalates. What does this pain signify? Will I make it through the night? Through the week? Through the next few months? Is there any path out?
The palliative team have offered to start me on morphine – a drug I hate and fear. When I protested, “But I don’t want to have to go through withdrawal when I try to get off it in the future,” they looked at me pityingly. They know I will never get off of it. But the pain, tearing at me every day, saws away at my resistance to this irreversible step.
Nothing about this situation is straightforward. One must continually pivot to new news, new ideas, new symptoms. Family plans are like dice in the air. The pandemic threatens all things. It is, as the Indigo Girls say, “a crooked line” through cancer in the age of COVID-19.
Which brings me to today’s song. “Closer to Fine” is from their Indigo Girls 1989 eponymous album. I choose it today its many evocative messages: how hard it is to hope, how we are consumed by seeking answers, and how surrender to uncertainty can be paradoxically healing. I suspect many of us in this calamitous time are searching for elusive solutions to the personal crises the pandemic causes. We mortals must move through this miasma, clinging only to our courage.
I'm tryin' to tell you somethin' 'bout my life
Maybe give me insight between black and white
And the best thing you've ever done for me
Is to help me take my life less seriously
It's only life after all, yeah
Well darkness has a hunger that's insatiable
And lightness has a call that's hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety 'til I sank it
I'm crawling on your shores
And I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine, yeah
The closer I am to fine, yeah
And I went to see the doctor of philosophy
With a poster of Rasputin and a beard down to his knee
He never did marry or see a B-Grade movie
He graded my performance, he said he could see through me
I spent four years prostrate to the higher mind
Got my paper and I was free
I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine, yeah
The closer I am to fine, yeah
I stopped by the bar at three A.M.
To seek solace in a bottle, or possibly a friend
And I woke up with a headache like my head against a board
Twice as cloudy as I'd been the night before
And I went in seeking clarity
I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
We go to the doctor, we go to the mountains
We look to the children, we drink from the fountain
Yeah, we go to the Bible, we go through the work out
We read up on revival, we stand up for the lookout
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine
The closer I am to fine
The closer I am to fine, yeah
My greatest struggle is pain. The cancer pain is pressure, but the neorectal stricture pain is burning torture.
Very recently, I was able to talk to surgeons about what is possible. Sadly, my neorectum is fused to the posterior vagina at the very base. Unfortunately, because of this fusion, to risk repair of the stricture is to risk a total pelvic exteneration – losing rectum, anus, vagina, bladder, urethra - all the organs taken out as block. Although the procedure would extend my life, the morbidity of such an extensive surgery could significantly reduce the quality of that remaining life. Moreover, due to the cancer in my pelvic sidewall, it cannot cure me. So I must somehow endure the stricture pain.
Which leaves chemotherapy for life as my remaining option. A recent MRI, done to check for the effectiveness of the systemic treatment, showed an excellent response – a 75% reduction in tumour volume after 5 infusions. The cancer has retreated somewhat from the urethra. So right now, this seems to be the path towards saving the urology repair I moved Heaven and Earth to achieve last year.
Psychologically, I have been all over the place. I do not fear death. But like most of us, I fear great suffering. The months I went without any surgical opinion and without knowing if the cancer was growing or shrinking were very bleak. All scenarios go through your mind when the pain escalates. What does this pain signify? Will I make it through the night? Through the week? Through the next few months? Is there any path out?
The palliative team have offered to start me on morphine – a drug I hate and fear. When I protested, “But I don’t want to have to go through withdrawal when I try to get off it in the future,” they looked at me pityingly. They know I will never get off of it. But the pain, tearing at me every day, saws away at my resistance to this irreversible step.
Nothing about this situation is straightforward. One must continually pivot to new news, new ideas, new symptoms. Family plans are like dice in the air. The pandemic threatens all things. It is, as the Indigo Girls say, “a crooked line” through cancer in the age of COVID-19.
Which brings me to today’s song. “Closer to Fine” is from their Indigo Girls 1989 eponymous album. I choose it today its many evocative messages: how hard it is to hope, how we are consumed by seeking answers, and how surrender to uncertainty can be paradoxically healing. I suspect many of us in this calamitous time are searching for elusive solutions to the personal crises the pandemic causes. We mortals must move through this miasma, clinging only to our courage.
I'm tryin' to tell you somethin' 'bout my life
Maybe give me insight between black and white
And the best thing you've ever done for me
Is to help me take my life less seriously
It's only life after all, yeah
Well darkness has a hunger that's insatiable
And lightness has a call that's hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety 'til I sank it
I'm crawling on your shores
And I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine, yeah
The closer I am to fine, yeah
And I went to see the doctor of philosophy
With a poster of Rasputin and a beard down to his knee
He never did marry or see a B-Grade movie
He graded my performance, he said he could see through me
I spent four years prostrate to the higher mind
Got my paper and I was free
I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine, yeah
The closer I am to fine, yeah
I stopped by the bar at three A.M.
To seek solace in a bottle, or possibly a friend
And I woke up with a headache like my head against a board
Twice as cloudy as I'd been the night before
And I went in seeking clarity
I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
We go to the doctor, we go to the mountains
We look to the children, we drink from the fountain
Yeah, we go to the Bible, we go through the work out
We read up on revival, we stand up for the lookout
There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine
The closer I am to fine
The closer I am to fine, yeah
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