I know how this patient - a high achiever - is feeling. Here are his thoughts.
What will I do differently?
"I was also told: There is no cure. There is no remission. Treatment options are limited and inconsistent. It’s possible that surgery might have bought me more time – but my new care team understood that I favored quality of life (hence my decision to opt out of surgery) over length of my life. And thankfully, some new treatments not available in Steve Jobs’ time have worked to shrink my tumors by sixty percent.
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me."
Another person whose feelings I share.
"It might sound as if I am regarding everything in a state of complete calm. I suppose that is true in a way. But at the same time there are days full of darkness. When the voice I use to talk to myself is draped with mourning crepe. Days that are hard-going, depressing. Days when the only thing to do is to grit one’s teeth and force oneself to think different thoughts. It usually works. There are few days when apprehension gains the upper hand. I am usually stronger than the dark forces that are trying to drag me down into a spiritual abyss."
Dying young.
Dr Paul Kalanithi, neurosurgeon in Stanford, wrote essays for The New York Times and Stanford Medicine reflecting on being a physician and a patient, the human experience of facing death, and the joy he found despite terminal illness. He died at 37 in March 2015.
What will I do differently?
"I was also told: There is no cure. There is no remission. Treatment options are limited and inconsistent. It’s possible that surgery might have bought me more time – but my new care team understood that I favored quality of life (hence my decision to opt out of surgery) over length of my life. And thankfully, some new treatments not available in Steve Jobs’ time have worked to shrink my tumors by sixty percent.
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me."
Another person whose feelings I share.
"It might sound as if I am regarding everything in a state of complete calm. I suppose that is true in a way. But at the same time there are days full of darkness. When the voice I use to talk to myself is draped with mourning crepe. Days that are hard-going, depressing. Days when the only thing to do is to grit one’s teeth and force oneself to think different thoughts. It usually works. There are few days when apprehension gains the upper hand. I am usually stronger than the dark forces that are trying to drag me down into a spiritual abyss."
Dying young.
Dr Paul Kalanithi, neurosurgeon in Stanford, wrote essays for The New York Times and Stanford Medicine reflecting on being a physician and a patient, the human experience of facing death, and the joy he found despite terminal illness. He died at 37 in March 2015.
I
was also told: There is no cure. There is no remission. Treatment
options are limited and inconsistent. It’s possible that surgery might
have bought me more time – but my new care team understood that I
favored quality of life (hence my decision to opt out of surgery) over length
of my life. And thankfully, some new treatments not available in Steve
Jobs’ time have worked to shrink my tumors by sixty percent.
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me.
- See more at: http://scopeblog.stanford.edu/2014/09/16/so-my-life-will-be-shorter-than-id-hoped-what-should-i-do-differently/#sthash.wN2Et6bJ.dpuf
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me.
- See more at: http://scopeblog.stanford.edu/2014/09/16/so-my-life-will-be-shorter-than-id-hoped-what-should-i-do-differently/#sthash.wN2Et6bJ.dpuf
I
was also told: There is no cure. There is no remission. Treatment
options are limited and inconsistent. It’s possible that surgery might
have bought me more time – but my new care team understood that I
favored quality of life (hence my decision to opt out of surgery) over length
of my life. And thankfully, some new treatments not available in Steve
Jobs’ time have worked to shrink my tumors by sixty percent.
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me.
- See more at: http://scopeblog.stanford.edu/2014/09/16/so-my-life-will-be-shorter-than-id-hoped-what-should-i-do-differently/#sthash.wN2Et6bJ.dpuf
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me.
- See more at: http://scopeblog.stanford.edu/2014/09/16/so-my-life-will-be-shorter-than-id-hoped-what-should-i-do-differently/#sthash.wN2Et6bJ.dpuf
I
was also told: There is no cure. There is no remission. Treatment
options are limited and inconsistent. It’s possible that surgery might
have bought me more time – but my new care team understood that I
favored quality of life (hence my decision to opt out of surgery) over length
of my life. And thankfully, some new treatments not available in Steve
Jobs’ time have worked to shrink my tumors by sixty percent.
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me.
- See more at: http://scopeblog.stanford.edu/2014/09/16/so-my-life-will-be-shorter-than-id-hoped-what-should-i-do-differently/#sthash.wN2Et6bJ.dpuf
Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me.
- See more at: http://scopeblog.stanford.edu/2014/09/16/so-my-life-will-be-shorter-than-id-hoped-what-should-i-do-differently/#sthash.wN2Et6bJ.dpuf
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