The pandemic continues to rage on. Meanwhile, I too continue.
I am currently on 13 of 15 infusions of chemotherapy. A new treatment plan has evolved. I will undergo a chemo “break” over Christmas. In early January, I will be assessed for a non-cancer surgery to take place at the end of that month. Then I need at least three weeks to recover before resuming chemotherapy again.
Currently, it is the opinion of various experts that my GI stricture cannot be dilated. My surgeon came up with a creative and sensible solution: if I am suitable, he will create a loop or a double-barrel colostomy. This will allow me to have 100% continuity of digestion, as opposed to the partial diversion I have now, thus solving my mechanical problem of build-up above the stricture. Also, it will create treatment options for the stricture pain, as anti-inflammatory medications can be introduced to the descending arm. This approach avoids surgery in the deep pelvis, which my surgeon fears could threaten the VVF repair I had done in Toronto. I want to protect that repair at all costs. Although my pelvic tumour remains inoperable, this surgery will help me live with it.
Curiously, I can report that over my last three infusions, I feel and function better than I did the previous 10 infusions. It may be because of the significant reduction in tumour size, and hence tumour pain. My initial scans suggested a 75% reduction in tumour volume after 5 infusions. Subsequent scans suggested no further change. However, I told my oncologist that I sensed ongoing improvement. And guess what? My scan of last week says it had indeed reduced by a further 30%. The oncologist said he always goes with the patient’s impression in such situations, so he agreed to a further 6 infusions.
Everything has improved: pain, energy, sleep and mood are getting better. The greatest side effects currently are my bizarre skin reactions and hair loss. The skin reactions change every infusion, and get increasingly odd. This past infusion, I had a strange rash only between the fingers of my left hand. The previous one, the rash appeared on my left shoulder. How weird is that?
So why am I feeling better? Could it be because I am relieved by the scan results? By the fledgling hope by that surgery can improve my quality of life? By the supports (nursing guidance, personal trainer) I have in place? By Austin and Hannah moving back to relatively-safe Nova Scotia? By better pain control via medication? By the recent increase in my CBD? By the Biden victory in the US election? Whatever the reason, I am grateful for any reprieve.
For those wondering, my famous Halloween stunts went well. This year, Andrew built a whimsical 10-foot candy shute which led to a life-size monster. The candy then bounced off the ghoul’s hands and into the waiting bags of the trick-or-treaters. Kids and parents alike were greatly entertained, with several shouting, “You do Halloween right!”
I continue to advocate for patient rights. I have participated as a panelist in several virtual conferences and webinars in past months. One in particular stands out: doctors and healthcare leaders in Saudi Arabia wanted to talk about patient safety. I was so struck by their passion for the topic. I marvelled at how our discussions transcended the vast distance between us in geography and culture in our vision for safe medical care—such a universal human issue.
Today’s song is the 1991 single “Calling all Angels” by the brilliant Canadian artist Jane Siberry. Mingling grief and solace, this song is often shared at funerals. I choose it today because I believe it captures the struggle to remain hopeful, to keep going under unbearable burdens, to face the uncertainty of life under COVID19 (“we’re not sure how this goes”). Its appeal to otherworldly help echoes how exhausted we are while underscoring that life and nature remains ineffably lovely. The linked version I love best is performed in a gorgeous duet with the incomparable k.d. lang.
Santa Maria, Santa Teresa, Santa Anna, Santa Susannah
Santa Cecilia, Santa Copelia, Santa Domenica, Mary Angelica
Frater Achad, Frater Pietro, Julianus, Petronilla
Santa, Santos, Miroslaw, Vladimir and all the rest
A man is placed upon the steps and a baby cries
High above you can hear the church bells start to ring
And as the heaviness, oh, the heaviness, the body settles in
Somewhere you can hear a mother sing
Then it’s one foot, then the other as you step out on the road
Step out on the road, how much weight, how much?
Then it’s how long and how far and how many times
Oh, before it’s too late?
Calling all angels, calling all angels
Walk me through this one, don’t leave me alone
Calling all angels, calling all angels
We’re tryin’, we’re hopin’ but we’re not sure how
Oh, and every day you gaze upon the sunset with such love and intensity
Why?
It’s ah, it’s almost as if you could only crack the code then you’d finally understand
What this all means
Oh, but if you could, do you think you would trade in all
All the pain and suffering?
Oh, but then you’d miss the beauty of the light upon this earth
And the, and the sweetness of the leaving
Calling all angels, calling all angels
Walk me through this one, don’t leave me alone
Calling all angels, calling all angels
We’re tryin’, we’re hopin’ but we’re not sure how
Calling all angels (calling all angels), calling all angels (calling all angels)
Walk me through this one, don’t leave me alone (walk me through this one, don’t leave me alone)
Calling all angels, calling all angels
We’re tryin’, we’re hopin’, we’re hurtin’, we’re lovin’
We’re cryin’, we’re callin’ ’cause we’re not sure how this goes
Currently, it is the opinion of various experts that my GI stricture cannot be dilated. My surgeon came up with a creative and sensible solution: if I am suitable, he will create a loop or a double-barrel colostomy. This will allow me to have 100% continuity of digestion, as opposed to the partial diversion I have now, thus solving my mechanical problem of build-up above the stricture. Also, it will create treatment options for the stricture pain, as anti-inflammatory medications can be introduced to the descending arm. This approach avoids surgery in the deep pelvis, which my surgeon fears could threaten the VVF repair I had done in Toronto. I want to protect that repair at all costs. Although my pelvic tumour remains inoperable, this surgery will help me live with it.
Curiously, I can report that over my last three infusions, I feel and function better than I did the previous 10 infusions. It may be because of the significant reduction in tumour size, and hence tumour pain. My initial scans suggested a 75% reduction in tumour volume after 5 infusions. Subsequent scans suggested no further change. However, I told my oncologist that I sensed ongoing improvement. And guess what? My scan of last week says it had indeed reduced by a further 30%. The oncologist said he always goes with the patient’s impression in such situations, so he agreed to a further 6 infusions.
Everything has improved: pain, energy, sleep and mood are getting better. The greatest side effects currently are my bizarre skin reactions and hair loss. The skin reactions change every infusion, and get increasingly odd. This past infusion, I had a strange rash only between the fingers of my left hand. The previous one, the rash appeared on my left shoulder. How weird is that?
So why am I feeling better? Could it be because I am relieved by the scan results? By the fledgling hope by that surgery can improve my quality of life? By the supports (nursing guidance, personal trainer) I have in place? By Austin and Hannah moving back to relatively-safe Nova Scotia? By better pain control via medication? By the recent increase in my CBD? By the Biden victory in the US election? Whatever the reason, I am grateful for any reprieve.
For those wondering, my famous Halloween stunts went well. This year, Andrew built a whimsical 10-foot candy shute which led to a life-size monster. The candy then bounced off the ghoul’s hands and into the waiting bags of the trick-or-treaters. Kids and parents alike were greatly entertained, with several shouting, “You do Halloween right!”
I continue to advocate for patient rights. I have participated as a panelist in several virtual conferences and webinars in past months. One in particular stands out: doctors and healthcare leaders in Saudi Arabia wanted to talk about patient safety. I was so struck by their passion for the topic. I marvelled at how our discussions transcended the vast distance between us in geography and culture in our vision for safe medical care—such a universal human issue.
Today’s song is the 1991 single “Calling all Angels” by the brilliant Canadian artist Jane Siberry. Mingling grief and solace, this song is often shared at funerals. I choose it today because I believe it captures the struggle to remain hopeful, to keep going under unbearable burdens, to face the uncertainty of life under COVID19 (“we’re not sure how this goes”). Its appeal to otherworldly help echoes how exhausted we are while underscoring that life and nature remains ineffably lovely. The linked version I love best is performed in a gorgeous duet with the incomparable k.d. lang.
Santa Maria, Santa Teresa, Santa Anna, Santa Susannah
Santa Cecilia, Santa Copelia, Santa Domenica, Mary Angelica
Frater Achad, Frater Pietro, Julianus, Petronilla
Santa, Santos, Miroslaw, Vladimir and all the rest
A man is placed upon the steps and a baby cries
High above you can hear the church bells start to ring
And as the heaviness, oh, the heaviness, the body settles in
Somewhere you can hear a mother sing
Then it’s one foot, then the other as you step out on the road
Step out on the road, how much weight, how much?
Then it’s how long and how far and how many times
Oh, before it’s too late?
Calling all angels, calling all angels
Walk me through this one, don’t leave me alone
Calling all angels, calling all angels
We’re tryin’, we’re hopin’ but we’re not sure how
Oh, and every day you gaze upon the sunset with such love and intensity
Why?
It’s ah, it’s almost as if you could only crack the code then you’d finally understand
What this all means
Oh, but if you could, do you think you would trade in all
All the pain and suffering?
Oh, but then you’d miss the beauty of the light upon this earth
And the, and the sweetness of the leaving
Calling all angels, calling all angels
Walk me through this one, don’t leave me alone
Calling all angels, calling all angels
We’re tryin’, we’re hopin’ but we’re not sure how
Calling all angels (calling all angels), calling all angels (calling all angels)
Walk me through this one, don’t leave me alone (walk me through this one, don’t leave me alone)
Calling all angels, calling all angels
We’re tryin’, we’re hopin’, we’re hurtin’, we’re lovin’
We’re cryin’, we’re callin’ ’cause we’re not sure how this goes
This post originally appeared on The Cancer Olympics on November 13, 2020. It is republished with permission.
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