Derek Lowe’s writeup is good:
https://www.science.org/content/blog-post/progress-against-p...
> ...
> He’s been on daraxonrasib since early this year, and describes it this way: “. . .it’s a nasty drug. It causes crazy stuff like my body can’t grow skin and so I bleed all out of a whole bunch of parts of me that shouldn’t be bleeding” If you go to that link above, be prepared, because he also looks like he’s had aqua regia thrown all over him (and apparently feels a bit like that, too). But his tumor volume has gone down by about 75%, and there’s a very strong chance that he wouldn’t still be alive at all without having gone on the drug.
But to me, that doesn’t sound like a life worth living. Obviously different people will have different thresholds for when to throw in the towel, and I’m glad that we are finding medicines to allow people to make the choices that align with their own drives.
Still, I can’t help but think that this is the sort of life virtually none of us would choose to inflict on our pets, even if cost was no option. We give them a far more graceful exit from this world than we give ourselves, and I think that’s worth considering.
I am truly terrified of death. I wish I wasn’t, but an infinity of nonexistence somehow seems unbearable (though, obviously, it will be trivial to bear in practice). I still hope that when my time comes, I will find the strength to exit gracefully if my life ever gets to the point where each day is filled with pain and discomfort, and where I can’t actually take part in any of the things I enjoy about life.
I hope that this is only a temporary treatment for this guy to get the tumor to a point where it can be operated on or treated with other therapies. Because his life sounds like a living hell and that breaks my heart.
I think he looks better than every 90 year old. But he also mentions that it still is terminal.
[0] https://www.nytimes.com/video/opinion/100000010826256/what-d...
I am in a position to be intimately familiar with illness. I will say that health is a spectrum and the mind is incredibly resilient. You will surprise yourself as you inevitably age how much your mind will adapt to always hurting. There is more to life than body discomfort. This patient sounds like he has his faculties and is making an informed decision to continue living, because his life is worth the discomfort he is going through. I am reminded of a line along the lines of every day you experience, no matter how terrible, is very likely a day that someone else yesterday would have desperately wanted.
Doctors tend to choose the treatments that bias quality of life over quantity of life. That’s all I’m getting at here. I personally hope that if it ever comes to it, I will have the strength to choose something like three months of high QoL over one year of grinding daily misery as I have personally seen others do.
Having your skin fail to regenerate, bleeding everywhere, and having skin that looks like you’ve had aqua regia poured over it seems to me like a poor quality of life. It sounded like a life of pain and one in which it would be difficult to do a lot of the things that bring me joy. Perhaps it’s not as bad as it sounds, and this is a poor example of it. I’m not judging this guy for his choices; they’re his to make. And maybe I’ve overestimated the amount of pain he’s in. But from the description above, it sounded awful.
https://hms.harvard.edu/news/how-doctors-die
> Physicians are less likely than the general population to undergo intense end-of-life treatments
I often think about this, wondering how many of those animals would have chosen death if given the choice, and how often it is simply a way to spare the owner from seeing something that upsets them.
I'm personally particularly upset by the easy conviction with which most people neuter their pets. I can rant for hours on the ethics of that, or the complete lack thereof, in my opinion. I'm shocked there is so little debate on that, even by philosophers and particularly of animal rights activists who really, really should know better than support such a cruel, egregious and obvious violation of an animal's individual existence.
At least in some countries neutering an animal for anything but medical reasons is illegal. Maybe I should move to Norway.
Bonus: great Black Metal scene.
The alternative we in America have settled on right now is shelters which perform euthanasia on unwanted animals. I would love to know how communities that have banned these procedures deal with the issue.
You use the word "feral" but I find that's a bit of a loaded term because it makes it sound like those animals are wild and violent. They're usually not, or at least not more than domestic animals. In the UK, where I live, there are no strays and still there are thousands of dog attacks, some causing injury or even death every year. Cats of course don't attack humans unless you really piss them off and even then it's not like they can seriously injure you.
You could also think about all the "feral" animals we do not try to neuter in large numbers like pigeons or seagulls. Much of what's wrong with their lives is that people treat them like dirt. That's not a problem you solve by castrating an animal, or at least a non-human animal. Why only neuter cats and dogs? Because we care more about them? That sounds like some kind of perverse inversion to me.
And let's not forget: the only difference between a "feral" or stray cat or dog and a pet is that someone's taken the pet in. I suppose in civilised countries you only get your pets from a certified breeder and you know their pedigree but where I come from if you want a cat or a dog you can just take one from the street. Or, often, they come to you on their own; cats mostly, but dogs, too some times. That was the case for most of the animals I've ever cared for: basically all the cats and a couple of the dogs too.
>> I would love to know how communities that have banned these procedures deal with the issue.
There's a famous documentary about the stray cats of Istanbul, called Kedi (meaning "cat" in Turkish). I haven't watched it yet but it sounds like the thing you'd want to watch if you haven't grown up with strays all over the place:
BUT ... this is not a binary situation, where suddenly life becomes unbearable. There's so much worth living for. And not just the obvious big things in life (kids, family, friends), but also many many small things. Man, that first cup of cappuchino once the effects of chemo wear off alone is almost worth all the puking beforehand :) Or having a nice piece of cheese. Seeing my small herb garden grow. Etc. etc.
The trick is to live a peaceful, content life. Be grateful for what you have. Enjoy your short time on earth.
I don’t think I was clear that I’m not afraid of being simply uncomfortable in my final days, but that there are absolutely medical treatments that can extend one’s life at extreme cost to quality of life. And there’s a threshold where I hope I’ll choose quality over quantity.
Sometimes you don’t know what that cost will be before starting treatment. Sometimes you’re holding out hope that the treatment will help you actually make it out the other side alive and healthy again. Sometimes you want to make it through long enough to see a child graduate, or meet a grandchild on the way, or some other meaningful event. There’s a million reasons one might choose between treatment options. And I don’t begrudge anyone for making the choice that’s right for them.
I’m sorry to hear what you’re going through, but I’m glad that it sounds like you’ve chosen a path that brings you the most fulfillment possible.
Insensitive comment in general. "Throw in the towel" really pissed me off.
Obviously I am not saying that people should choose to forego treatment to avoid minor discomfort. I am saying that there are thresholds of quality of life where I think—given both foreknowledge of a treatment’s consequences and emotional distance from the situation—many would choose a shorter, higher quality of life than a longer, drawn out daily battle with little of the things we enjoy.
There is a targeted therapy that applies to many melanomas, but hers did not have the mutation that made it an option. Perhaps this treatment will be tweaked and developed to be less awful and offer that gift of time that my wife didn’t have.
Cancer and other diseases are insidious. While she didn’t make it, she had hope. And the reality is her hope was built on the shoulders of countless others who faced certain death and whose experiences led us to the 60/40 odds that melanoma patients have today.
There are so many different situations I could not imagine happily living in even when I try to, but then I try to think about how I would feel if I was born into the situation from day one. I wouldn't really know any other life, and so it would just be my life. With that in mind, the most troubling thing mostly seems to be what I have perceived to have lost, rather than what I currently have. That helps me understand how you can keep on living. Even when you lose something, you still have what you still have.
<https://en.wikipedia.org/wiki/Chemotherapy-induced_acral_ery...>
I'd first run across this decades ago in the context of FDA drugs trials, in which adverse incidents were noted. My understanding at the time was that certain chemotherapies tended to interfere with skin regeneration, particularly in areas subject to high wearing (hands, feet, elbows), or rapid replacement (particularly mucous membranes, lips and mouth especially).
Not all chemotherapies are brutal, but some can be quite fiendish, and quality of life is a legitimate consideration when considering whether to proceed with treatment. Informed decisionmaking and consent in a context where expertise is rare and clinicians don't directly experience the adverse effects is difficult at best.