Ari, this post is saturated with wisdom: clear analysis coupled with honesty born from lived experience. Thanks for sharing. As someone coming from the healthcare side of things, I appreciate the way you give very practical "how-to's" to others who may find themselves staggering through a dizzying system. I'm slowly catching up and am looking forward to reading more.
Wow. There are so many ways I could react to this-- as a writer (the imagery and the stories you share are so vivid and new; the "electric purple flowers", the chemo room being a "cross-section of society", that flow chart of life and death-- are images that I can feel getting stuck in my head for the next few days), as someone working in healthcare (often being on the other side of the conversations you mention, I have to admit "Each time I would ask a few questions I’d find myself at the edge of human knowledge." is so real), and as a fellow human with a chronic health condition (and knowing the advice many therapists/medical professionals give are template answers you've heard before which you know won't work for you).
I suppose that's vested interests x 3. Jumping on board!
"Decided to enter an experimental and dangerous clinical trial"
My choice was to start clinical trials or die. My wife is an ER doc and spearheaded the trial process; from the patient perspective, it's such a wild write that she wrote a guide to it, much of which is about how our story played out: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly
amazing guide! Finding clinical trials is a nightmare. I'm similarly surprised that nobody has been able to build the right kind of matching algo to solve this.
What an incredible essay. Your explanation of your personal experience is so vivid. But, more importantly, you took that experience and transposed it into something that anyone can use (and, unfortunately, we are all likely to need this advice someday).
Ari, this post is saturated with wisdom: clear analysis coupled with honesty born from lived experience. Thanks for sharing. As someone coming from the healthcare side of things, I appreciate the way you give very practical "how-to's" to others who may find themselves staggering through a dizzying system. I'm slowly catching up and am looking forward to reading more.
Amanda thank you so much! That means a lot - much more to come!
Wow. There are so many ways I could react to this-- as a writer (the imagery and the stories you share are so vivid and new; the "electric purple flowers", the chemo room being a "cross-section of society", that flow chart of life and death-- are images that I can feel getting stuck in my head for the next few days), as someone working in healthcare (often being on the other side of the conversations you mention, I have to admit "Each time I would ask a few questions I’d find myself at the edge of human knowledge." is so real), and as a fellow human with a chronic health condition (and knowing the advice many therapists/medical professionals give are template answers you've heard before which you know won't work for you).
I suppose that's vested interests x 3. Jumping on board!
Thanks, so glad to have you here!
"To cut a very long story short, I took a highly proactive role in navigating the experience"
I'm dying of squamous cell carcinoma, originally of the tongue, and have had to do the same: https://jakeseliger.com/2024/05/09/the-recent-war-between-cancer-and-cancer-treatment-side-effects/
"Decided to enter an experimental and dangerous clinical trial"
My choice was to start clinical trials or die. My wife is an ER doc and spearheaded the trial process; from the patient perspective, it's such a wild write that she wrote a guide to it, much of which is about how our story played out: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly
amazing guide! Finding clinical trials is a nightmare. I'm similarly surprised that nobody has been able to build the right kind of matching algo to solve this.
This was fantastic, Ari! We would love to have you over at Cancer Culture!
Thanks! DM me me will be happy to talk more!
What an incredible essay. Your explanation of your personal experience is so vivid. But, more importantly, you took that experience and transposed it into something that anyone can use (and, unfortunately, we are all likely to need this advice someday).
I am a subscriber.
Thanks Drake! That's definitely my intention