Beautifully written as usual and I love the substance of your comments. Medicine today saves lives for sure, but is sorely lacking in many ways. Have you read Peter Attia’s book “Outlive,” Casey Means’ book “Good Energy” and Marty Makary’s “Blind Spots” (when medicine gets it wrong and what it means to our health)? All doctors distressed with the current system. I think I you would find fascinating, particularly the last one.
Having finished radiation last Friday, this rings true. Doctor said if it comes back we have to look at surgery. Any more radiation will almost certainly cause blindness. Wow, really??
“The Nurse Practitioner didn't miss a beat. She said:”
"Tons of damage, but rarely does someone in your position live long enough for that damage to manifest."
I’m gobsmacked by this. I am so sad you had to endure this. I’m an older nurse Chris, with 44 years experience, 25 of those in hospice, and this is just utterly wrong. What a caustic thing to say. And wrong as usual.
I have taken care of many patients with glioma. And glioma has impacted me personally; two in my own family, a local friend and now a friend’s mother.
Each had a different path through treatment. Some chose aggressive care and others only supportive care.
I think the best care lies somewhere in between honestly.
Much love to you on this journey. I love reading your eloquent words.
Always, always appreciate your compassion. Thank you.
Your clarification is important, and I'm glad that you took the time to respond to the NP's words. Especially highlighting that what she said may, indeed, be "utterly wrong."
But once I get past the the caustic nature of the comment, I do think it revealed something very important: That western medicine is often willing to assume risks for us that we might not be willing to assume for ourselves, especially when there is no clear alternative.
I am grateful to have a care team with whom, especially now that the shock of the diagnosis has subsided, we can talk candidly about the risk/reward calculus. But I'm finding it hard to find the balance between aggressive and supportive, and I wonder why we have to choose at all. I long for aggressive AND supportive. I long for curing AND caring. And the ever-optimistic part of me rejects the assumption that this longing is beyond our reach. Perhaps it is now, but not forever.
Finally, and I hope I have said this to you before, I am so grateful that there are people like you who approach their patients first, from a caring perspective. How many times have you heard that you do "Sacred Work?" Well, here is one more time.
I'm honored that you would walk with me, especially given that you know first-hand how challenging it might be to accompany another.
Chris; you can have both aggressive treatment with supportive care if you utilize the palliative services as a consult to your oncology treatments. Palliative does what the word says; palliates the symptoms to make them manageable. This can go hand in hand with treatment. This is the in between I mentioned in my first reply.
NIH says this: "From a biological point of view, cancer can be viewed as an invasive species, composed of cells that move from primary to distant sites, being continuously exposed to changes in the environmental conditions."
I wonder if cancer is, itself "created matter," Which leads straight down a moral ethical dilemma. Who decides which "created matter" ought to be deprived of being when it appears that for one creature to live deprives another of life. That is, I think, why I ask the question about harmony. I want it to be possible. Badly.
Very thought provoking and I agree that the approach is always on a war footing. In less life threatening illnesses there is a truce or a surrender and we do get
to a coexistence footing. I also believe that we have indeed destroyed our own bodies ability to go to war with the nastiest stuff today and does not bode well for the future enemies. I want to dive deeper the next time we get together. Much love.
This is a great point. I can't find the exact study but they once interviewed oncologists about how they would treat themselves if they had cancer and across the board they said they would choose much less aggressive treatment for themselves than they would for a patient. Here's an article that touches on the mindset, maybe it's our addiction to "doing"
First, I love seeing you on here. Thank you for reaching out. I think of you and our band of poets often.
Second, isn't the fact that oncologists would be less aggressive in their own treatment than their patients' fascinating?
I think for my next meeting, I will ask my oncologist (and the NP) this very question.
"If you were diagnosed with my condition, how aggressive would you choose to be in treatment?"
I worry they might say, "I cannot put myself in your shoes, and this is always very, very personal." And, of course, that's true. But I hope they might be candid.
Thank you again for your thoughtful and kind words.
Beautifully written as usual and I love the substance of your comments. Medicine today saves lives for sure, but is sorely lacking in many ways. Have you read Peter Attia’s book “Outlive,” Casey Means’ book “Good Energy” and Marty Makary’s “Blind Spots” (when medicine gets it wrong and what it means to our health)? All doctors distressed with the current system. I think I you would find fascinating, particularly the last one.
Maria,
Thank you for your kind words and the thoughtful recommendations. I will definitely check these out.
And thank you for walking with us on this journey. It is kind and I'm so grateful.
C
Having finished radiation last Friday, this rings true. Doctor said if it comes back we have to look at surgery. Any more radiation will almost certainly cause blindness. Wow, really??
“The Nurse Practitioner didn't miss a beat. She said:”
"Tons of damage, but rarely does someone in your position live long enough for that damage to manifest."
I’m gobsmacked by this. I am so sad you had to endure this. I’m an older nurse Chris, with 44 years experience, 25 of those in hospice, and this is just utterly wrong. What a caustic thing to say. And wrong as usual.
I have taken care of many patients with glioma. And glioma has impacted me personally; two in my own family, a local friend and now a friend’s mother.
Each had a different path through treatment. Some chose aggressive care and others only supportive care.
I think the best care lies somewhere in between honestly.
Much love to you on this journey. I love reading your eloquent words.
Janice,
Always, always appreciate your compassion. Thank you.
Your clarification is important, and I'm glad that you took the time to respond to the NP's words. Especially highlighting that what she said may, indeed, be "utterly wrong."
But once I get past the the caustic nature of the comment, I do think it revealed something very important: That western medicine is often willing to assume risks for us that we might not be willing to assume for ourselves, especially when there is no clear alternative.
I am grateful to have a care team with whom, especially now that the shock of the diagnosis has subsided, we can talk candidly about the risk/reward calculus. But I'm finding it hard to find the balance between aggressive and supportive, and I wonder why we have to choose at all. I long for aggressive AND supportive. I long for curing AND caring. And the ever-optimistic part of me rejects the assumption that this longing is beyond our reach. Perhaps it is now, but not forever.
Finally, and I hope I have said this to you before, I am so grateful that there are people like you who approach their patients first, from a caring perspective. How many times have you heard that you do "Sacred Work?" Well, here is one more time.
I'm honored that you would walk with me, especially given that you know first-hand how challenging it might be to accompany another.
Much love to you, too.
C
Chris; you can have both aggressive treatment with supportive care if you utilize the palliative services as a consult to your oncology treatments. Palliative does what the word says; palliates the symptoms to make them manageable. This can go hand in hand with treatment. This is the in between I mentioned in my first reply.
Enjoyed your essay this week, Chris. Wonder if that NP will see it too. That's some forthright answer she gave you!
Augustine thought evil was the deprivation of being or created matter. Rust or decay is the clearest metaphor.
In that light, is cancer something different or a similar analogy, I wonder.
Keep up the great writing.
I also wonder.
NIH says this: "From a biological point of view, cancer can be viewed as an invasive species, composed of cells that move from primary to distant sites, being continuously exposed to changes in the environmental conditions."
I wonder if cancer is, itself "created matter," Which leads straight down a moral ethical dilemma. Who decides which "created matter" ought to be deprived of being when it appears that for one creature to live deprives another of life. That is, I think, why I ask the question about harmony. I want it to be possible. Badly.
What would you say?
C
Amen
Very thought provoking and I agree that the approach is always on a war footing. In less life threatening illnesses there is a truce or a surrender and we do get
to a coexistence footing. I also believe that we have indeed destroyed our own bodies ability to go to war with the nastiest stuff today and does not bode well for the future enemies. I want to dive deeper the next time we get together. Much love.
Thanks, Keith. I was so good to see you today, and I look forward to deeper dive.
Much love,
C
This is a great point. I can't find the exact study but they once interviewed oncologists about how they would treat themselves if they had cancer and across the board they said they would choose much less aggressive treatment for themselves than they would for a patient. Here's an article that touches on the mindset, maybe it's our addiction to "doing"
https://med.stanford.edu/news/all-news/2014/05/most-physicians-would-forgo-aggressive-treatment-for-themselves-.html#:~:text=share,Stanford%20University%20School%20of%20Medicine.
Stephane,
First, I love seeing you on here. Thank you for reaching out. I think of you and our band of poets often.
Second, isn't the fact that oncologists would be less aggressive in their own treatment than their patients' fascinating?
I think for my next meeting, I will ask my oncologist (and the NP) this very question.
"If you were diagnosed with my condition, how aggressive would you choose to be in treatment?"
I worry they might say, "I cannot put myself in your shoes, and this is always very, very personal." And, of course, that's true. But I hope they might be candid.
Thank you again for your thoughtful and kind words.
C
All great books! I especially love Casey and Calley Means!
I will check them out!
Much love,
C