The results of the pelvis MRI are in, and were interpreted for me by my surgeon.
There is good news and bad news. The good news is that the mass reduced in size by a very small amount from last MRI: possibly, the first 5 rounds of chemo got most of it. He anticipates being able to resect and reattach the ureter relatively easily. The bad news: he thinks this surgery brings with it a reasonable risk of an ostomy. Either a temporary one, as I had last time (described as "Flipper" in The Cancer Olympics), or a permanent one, depending on how much damage he is forced to inflict as he operates. He says he will do everything in his power to avoid those outcomes. He does not want to use the intraperitoneal superheated chemotherapy, as he fears this will seriously compromise my healing, given that he is operating on radiated tissue which is already compromised in its capacity to heal.
Currently, I am working through the stigmata left by all those months of harsh chemotherapy. It did very strange things to my hair. It made the hair on my scalp come out in regular handfuls, necessitating the shaving of my head. It caused a soft down to grow on my face. Bizarrely, it increased the length of my eyelashes. These are not cute “Betty Boop” eyelashes, more like “Elvira Mistress of the Dark” eyelashes – that is, they grow forward, then sideways. The upper eyelashes are so long in places they actually touch my eyebrows. It is freakish.
Chemotherapy also compromised my toenails and my feet. The neuropathy is terrible – numbing pins and needles encase them, and occasionally jolt up my legs. It also resulted in strange cracks like little slices on the soles of my feet. I could not walk over much of Christmas. I was able to get in quickly with a very sweet podiatrist. He cut out a huge wedge of imbedded toenail that had been stabbing me repeatedly and thwarted healing. He told me that he has seen cancer surgeries cancelled by infected toenails, so he was glad I got help as soon as I could.
And now to try to build myself back up before surgery on 25 January. I am valiantly trying to do 30 minutes a day on the stationary bike and ellipse machine, to improve my lost cardio. I also hear that one needs biceps and triceps strength, to lift oneself out of bed. So I will try modest weights. I once was very strong – I am a long long way away from what I used to be. I have nowhere to go but up. As chemo recedes into my rearview mirror, I will get a little better every day. I am really looking forward to the day I can eat and actually taste food. And drink!
I have an appointment in two weeks to meet with administration and the clinical head of radiology of my local hospital to discuss the false negative CT I had last December, which so severely compromised my cancer care. I have written a one-page victim impact statement for them, as I believe the patient’s experience should be part of the analysis of adverse incidents. I am curious as to how it will be addressed. I will keep you posted as to how that goes.
“Nowhere to go but up” is the song of unusual Christian punk band Stellar Kart from their fifth and final 2013 album All In. It is chosen today to reflect my current dynamic of being at the bottom of functioning, but striving for a better alternative.
Running through every open door
But always missing what we’re looking for
Searching everywhere to find it
Never full, never satisfied
Never really understanding why
To win your life you have to lose it
Its time we realize were going down
Cause falling’s like flying till you hit the ground
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up
We can find a way out of this
Cause I will fight and never call it quits
So tell me, are you fighting with me?
So what’s it gonna be?
Is this the end or is it the beginning?
The beginning
So just keep on going
Keep on moving
Don’t let ‘em keep you down
Don’t let ‘em keep you down
So just keep on trying
Keep on fighting
No one can keep us down
No one can keep us down
So meet me at the bottom
We’ve got nowhere to go but up
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up.
There is good news and bad news. The good news is that the mass reduced in size by a very small amount from last MRI: possibly, the first 5 rounds of chemo got most of it. He anticipates being able to resect and reattach the ureter relatively easily. The bad news: he thinks this surgery brings with it a reasonable risk of an ostomy. Either a temporary one, as I had last time (described as "Flipper" in The Cancer Olympics), or a permanent one, depending on how much damage he is forced to inflict as he operates. He says he will do everything in his power to avoid those outcomes. He does not want to use the intraperitoneal superheated chemotherapy, as he fears this will seriously compromise my healing, given that he is operating on radiated tissue which is already compromised in its capacity to heal.
Currently, I am working through the stigmata left by all those months of harsh chemotherapy. It did very strange things to my hair. It made the hair on my scalp come out in regular handfuls, necessitating the shaving of my head. It caused a soft down to grow on my face. Bizarrely, it increased the length of my eyelashes. These are not cute “Betty Boop” eyelashes, more like “Elvira Mistress of the Dark” eyelashes – that is, they grow forward, then sideways. The upper eyelashes are so long in places they actually touch my eyebrows. It is freakish.
Chemotherapy also compromised my toenails and my feet. The neuropathy is terrible – numbing pins and needles encase them, and occasionally jolt up my legs. It also resulted in strange cracks like little slices on the soles of my feet. I could not walk over much of Christmas. I was able to get in quickly with a very sweet podiatrist. He cut out a huge wedge of imbedded toenail that had been stabbing me repeatedly and thwarted healing. He told me that he has seen cancer surgeries cancelled by infected toenails, so he was glad I got help as soon as I could.
And now to try to build myself back up before surgery on 25 January. I am valiantly trying to do 30 minutes a day on the stationary bike and ellipse machine, to improve my lost cardio. I also hear that one needs biceps and triceps strength, to lift oneself out of bed. So I will try modest weights. I once was very strong – I am a long long way away from what I used to be. I have nowhere to go but up. As chemo recedes into my rearview mirror, I will get a little better every day. I am really looking forward to the day I can eat and actually taste food. And drink!
I have an appointment in two weeks to meet with administration and the clinical head of radiology of my local hospital to discuss the false negative CT I had last December, which so severely compromised my cancer care. I have written a one-page victim impact statement for them, as I believe the patient’s experience should be part of the analysis of adverse incidents. I am curious as to how it will be addressed. I will keep you posted as to how that goes.
“Nowhere to go but up” is the song of unusual Christian punk band Stellar Kart from their fifth and final 2013 album All In. It is chosen today to reflect my current dynamic of being at the bottom of functioning, but striving for a better alternative.
Running through every open door
But always missing what we’re looking for
Searching everywhere to find it
Never full, never satisfied
Never really understanding why
To win your life you have to lose it
Its time we realize were going down
Cause falling’s like flying till you hit the ground
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up
We can find a way out of this
Cause I will fight and never call it quits
So tell me, are you fighting with me?
So what’s it gonna be?
Is this the end or is it the beginning?
The beginning
So just keep on going
Keep on moving
Don’t let ‘em keep you down
Don’t let ‘em keep you down
So just keep on trying
Keep on fighting
No one can keep us down
No one can keep us down
So meet me at the bottom
We’ve got nowhere to go but up
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up.
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