The one-year anniversary of my total glossectomy

That sucks, but his attitude is great, and that’s really important. I sincerely wish him well, and appreciate the note.

I had a coworker that had the same thing. Watching him deal with it was difficult.

Anyone who goes through something like this is an inspiration to those they interact with. I wish the absolute best for you.

What a simultaneously terrible and inspiring story- I wish Jake the best for whatever that is worth in such a terrible situation. If you guys didn't click it, I highly recommend his wife Bess's corresponding post to this one- "Forever is such a short, long time" it is one of the best essays I have ever read on love and relationships. There is an incredible amount of wisdom in what she wrote, that can only have come out of living through incredible hardship. It literally made me cry, and I am going to quote her in my wedding vows I am writing.

That's it, I'm going talk to my doctor about getting the Galleri test. I was already on the fence, but this is the straw that breaks the camel's back for me. (It isn't advertised as targeting his specific cancer, but goddamnit, I need some peace of mind.)

You're welcome!

I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective.

So my wife and I decided that the thing that we needed to exist in the world didn't exist, and thus we made it. When my wife and I started writing in earnest about the clinical-trial process in particular ("Please be dying, but not too quickly" is the most comprehensive: https://bessstillman.substack.com/p/please-be-dying-but-not-...), I kept expecting someone to leave a comment or send an email saying: "Hey buddy, this has already been done, check it out here: _______." But that comment or email never came. Probably someone else's comprehensive essay and guide exists somewhere, given how big the Internet is, but I've never seen it.

Without having had this kind of experience, I think it's difficult to understand just how difficult and not-user-friendly the clinical-trial process is. If we can help move the needle on that, we might dramatically reduce the number of people who are in a position like mine. Personalized cancer vaccines are so close: https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-new..., and I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering.

I hope no one who has read our work has to go through a version of what I've been through, or has friends or family who must, but, statistically, given that a couple hundred thousand people have seen it, someone will. And it is better to be equipped with some sense of what to do and how to do it, than to have to try to figure it from scratch. I've wound up emailing guidance to a lot of people about head and neck cancers, and clinical trials.