Jake Seliger

Sounds like you might be talking about Jake Seliger, and indeed, his and Bess' fight to get treatments was rather eye-opening for me too. Jake's blog where he posted throughout his entire illness: https://jakeseliger.com/ Bess' blog: https://bessstillman.substack.com/ It was a heartbreaking story to follow, and one that hit me a lot harder than I thought it would when Jake died.

> If there was, your family member's oncologist would have informed your family member of it. I have no insight into the OP’s case in particular, but this is objectively untrue in a large majority of cases. The percentage of oncologists who stay on top of and recommend clinical trials to their patients is in the single digits. One thing I’ve learned from following Jake Seliger’s excellent blog [0] is that cancer patients are often on their own when it comes to researching and applying to clinical trials. [0] https://jakeseliger.com/

I'll plug my own: http://jakeseliger.com. Http://marginalrevolution.com is great and has been mentioned at least once already.

Make sure to read Jake Seliger's blog. He really details the process on clinical trials. Rest in peace. https://jakeseliger.com/

Have you read Jake Seliger’s pieces on oncology clinical trials https://jakeseliger.com/.

I was deeply moved by Jake Seliger's last post on HN frontpage (https://jakeseliger.com/2024/08/04/starting-hospice-the-end/) so I thought Jake's wife's post here was worth sharing.

Thank you for pieces such as the following one on the unreasonable promise of mRNA vaccines and the right to try new treatments: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-cell-carcino… . HN discussion: https://news.ycombinator.com/item?id=36827438

Read this and follow the links to what Jake’s wife wrote as well https://news.ycombinator.com/item?id=40114696 Article: https://jakeseliger.com/2024/04/22/the-emotional-trial-of-clinical-tri…

> I feel sorry for Jake. This post is titled "The patient's perspective" but the only part that referred to his view was him saying he was too worn out to do more than a couple of flights. I'm not on the inside of the family but I wonder if the author is pushing the trial much more than the patient. I hope not. You needn’t wonder too much, you can satisfy your desire to know by simply reading Jake’s blog if you like. Not sure if there was a link to it on the posted article, or if it was linked from one of the other parts in the series. https://jakeseliger.com/

Jake has his own site where he shares his essays here: https://jakeseliger.com

> Every proven idea started as a random bullshit idea. No, actually, almost no proven ideas start this way. Ideas which ultimately solve problems in a complex field, generally require a great deal of expertise to discover. Penicillin was discovered by doctors, insulin was discovered by doctors. We all love the myth of an outsider who revolutionizes a field they were excluded from, but the reality is that someone like Florence Nightingale was excluded from medicine because of her gender, not because of her lack of subject expertise. The people who make groundbreaking discoveries in a field are almost universally experts in that field. Sure, maybe in some new field that's in its infancy, a random person has a chance of discovering something useful, but oncology isn't that--we've got centuries of study of cancers. Really? Let's look: > No one in this thread is presenting their ideas as definitive solutions as far as I see, everyone is being pretty good about providing their confidence levels and sources. Really? Let's take a look: 1. "Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects." Poster gives sources, but the sources don't say what he claims they say, because you know, randos of the internet aren't actually capable of reading medical studies. 2. "To give you the short version of the story about how…

In an August 2023 post about regrets, https://jakeseliger.com/2023/08/12/regrets/, his last regret is: * Not looking into that thing on my tongue in July 2022, when I first noticed it, but that is very specific to me and probably not generalizable. In https://jakeseliger.com/2024/05/16/the-financial-costs-of-healthcare-c… he mentions "...I got a partial glossectomy in Oct. 2022. Mine had some high-risk features, but I was assured that, with radiation therapy, it wouldn’t recur (Bess recalls the exact words being, “Don’t worry, this won’t be what kills you”). ... In retrospect, however, I obviously should’ve been given chemo with the radiation, but at the time I was pleased to not need chemo, and I foolishly didn’t look deeper into the data on recurrence—which is common for HNSCC—and I didn’t seek second opinions. Some of those second opinions might’ve said: “Get the chemotherapy." Followed by radiation treatments, mentioned in https://jakeseliger.com/2023/11/14/the-more-things-go-wrong-the-more-t… He posted about his followup investigation and the treatment of his tongue one year after the treatment - https://jakeseliger.com/2024/05/25/the-one-year-anniversary-of-my-tota… "By July 21, less than two months later, another six to eight tumors had grown. If I’d known how things would shake out, I likely would’ve pivoted to chemo and clinical trials the moment the surgical biopsy came back. But…

Jake posted as jseliger on HN: https://news.ycombinator.com/user?id=jseliger He blogged at <https://jakeseliger.com/>, and numerous of his blog articles were submitted to HN: <https://news.ycombinator.com/from?site=jakeseliger.com>. That includes numerous topics, over the past year or so his experience with cancer, often concerning frustrations with the process and mechanism. His essay on agenticness especially strikes me as hugely insightful and underappreciated. It was submitted several times to HN but saw little discussion: <https://jakeseliger.com/2024/07/29/more-isnt-always-better-death-and-o… Jake's wife, now widow, Bess, blogs at Everything is an Emergency: <https://bessstillman.substack.com>. That also details the cancer / caregiving experience, from the point of view of a wife, caregiver, expectant mother, and emergency-room doctor.

> It's a big mystery for me how the things went down since seventies. There is a insightful (if a bit messy, and occasionally wrong) book that purports to answer that question: Where is my flying car?: A memoir of future past, by J. Storrs Hall. [1] In that author's view, it boils down to * a levelling off of energy consumption per capita, that previously had doubled every 10 years. (In particular, the author laments the dearth of advanced nuclear power, which would be good for the economy and the climate.) * increasing regulation and risk aversion. * as well as “centralized funding streams”, “bureaucratic inertia,” “cultural malaise and indifference”. [1] Reviews: https://rootsofprogress.org/where-is-my-flying-car https://marginalrevolution.com/marginalrevolution/2020/09/where-is-my-… https://jakeseliger.com/2020/12/28/where-is-my-flying-car-a-memoir-of-…

According to Jake Seliger, it can hurt. https://jakeseliger.com/2024/07/29/more-isnt-always-better-death-and-o…

We are getting somewhat closer with "Right-to-try" laws: https://en.wikipedia.org/wiki/Right-to-try_law Jake Seliger (RIP) wrote about his frustrations with it also: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-cell-carcino… https://jakeseliger.com/2023/08/02/if-youre-involved-in-drug-developme…

Why is inequality in wealth a problem to be addressed? What about inequality in other areas of life like dating? Interesting blog post: https://jakeseliger.com/2014/05/30/the-inequality-that-matters-ii-why-…

The earlier posts wishing for more aggressive treatments in the past should be read in conjunction with later posts about the realities of overtreatment. Specifically, the post titled "More isn’t always better: death and over-treatment as a downside of agenticness" https://jakeseliger.com/2024/07/29/more-isnt-always-better-death-and-o… One of the difficult realities of cancer treatment is that everything comes with tradeoffs. It can be frustrating to work with doctors who aren't eager to apply every possible treatment at the earliest possibility, but those doctors also know the downsides and risks of those same treatments.

"Bizarrely, it’s apparently now required by the FTC for me to write, somewhere “As an Amazon Associate I earn from qualifying purchases.” So those links to books include Amazon referral tags, which you probably already know if you care about that sort of thing." https://jakeseliger.com/about/

A lot of words have been written about the role of food in human history and culture. Here’s one from the OP’s blog: https://jakeseliger.com/2024/02/26/food-and-friends-part-i-food-is-soc… The argument is: cooking and eating has been a fundamental human activity for millennia, one that brings people together, transmits culture, language, etc. - and to optimize it away as a problem is to disregard something very important about being a human being.

Another essay by Bess Stillman was popular on HN recently, again dealing elegantly with the topic of death: https://news.ycombinator.com/item?id=38635382. Her husband, Jake Seliger is dying from cancer, that started on his tongue but has metastasized. He has some good essays on his site, too, e.g. https://jakeseliger.com/2023/07/23/how-do-we-evaluate-our-lives-at-the…

I think this is the fix: https://jakeseliger.com/2023/10/16/how-do-you-say-goodbye/

Jake has written their experience elsewhere (and is linked to many times in the article, too) for example: https://jakeseliger.com/2023/08/27/on-being-ready-to-die-and-yet-also-…

So? People really, really want the prestige that goes with being a doctor. If they could pay for it they would. Physician compensation is heavily weighted towards middle and late career as it is and that hasn’t stopped people beating down the doors to get into medical school. Half the people who currently apply to medical school could look at how crap it is and decide not to and there would still be intense competition. The below article on how awful medicine and medical school are was written a decade ago and nothing has gotten better. People really like social status. https://jakeseliger.com/2012/10/20/why-you-should-become-a-nurse-or-ph…

Related: "Is there an actual Facebook crisis, or media narrative about Facebook crisis?" https://jakeseliger.com/2018/11/14/is-there-an-actual-facebook-crisis-… So sick of seeing this junk on HN every day.

I was actually looking for this http://jakeseliger.com/2015/12/27/why-did-cities-freeze-in-the-1970s/ and we had an interesting discussion going at https://news.ycombinator.com/item?id=10798352 Both might still be a bit too rumbling. If you want the least rambling, the Economist is almost always the way to go: http://www.economist.com/blogs/freeexchange/2015/04/land-value-tax

That's just the personal term I use to describe it, but I'd say it's a mix of lack of life experience, lack of expectations from the school, personal attitudes, lack of seriousness, lecture-hall style teaching and too many students, and low standards. Examples: - vandalizing all signs with the letter 't' around the school because the school has a reputation for "stealing a giant T" from a building, but all the students are too busy with career stuff to do anything like that - saying "I want a job that pays me the most money" - walking out in the middle of class after an attendance quiz - administrative staff sending out emails with numerous typos - lack of serious thought into important topics I think American college students tend to be less mature than European ones due to being stuck in a suburb for 18 years as well. I liked this article about universities: https://jakeseliger.com/2010/09/26/how-universities-work-or-what-i-wis…