Hacker News, thank you for all the links and all the great reading. Now I have to say goodbye.
I’m with my wife Bess (https://bessstillman.substack.com/) and my brother Sam, and crying, but it is okay. At the end of Lord of the Rings Gandalf says to the hobbits, "Go in peace! I will not say: do not weep; for not all tears are an evil.” And that is how I feel now. Ending prematurely hurts, but all things must end, and my time to end is upon me.
Jake, I am so, so sorry for everything you’ve gone through and wish peace for you and the best for your loved ones. I’ve followed your story here and always been touched by your candor. Thank you for all your contributions. I was rooting for a better outcome and am sorry that it hasn’t arrived. Goodbye.
Thank you, Jake! ---and your wife --- for your links and great reading that highlight the importance of clinical trials for mRNA tumor vaccines! Will keep posting to HN her articles when they come out.
https://archive.ph/bessstillman.substack.com
(Archive listing jseliger's wife Bess Stillman on clinical trials (including how to navigate them as patients) as well as comments)
UPDATE:
other concretes that have been mentioned, that are worth highlighting:
0) assume good faith & promote (& improve) Right-to-Try
Thank you for your writing - its taught me a lot about a lot of things. One concrete highlight is how important patient agency is in the patient-doctor relationship - which you've written about a few times.
I'm truly deeply sorry about this whole situation. Thank you for sharing all your knowledge.
2. Ultimately, reform and speed FDA approval for fatal diseases like recurrent / metastatic head and neck cancers: https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the.... A drug like petosemtamab (MCLA-158), which I was on from Sept. 27 2023 to March 29 2024, should already be approved, instead of continuing to wander around in clinical trials.
The FDA is a joke. I mean that in the kindest way possible as someone with long covid waiting for the FDA to allow me access to previous covid therapeutics that show promise in this disease.
Yes the clinical trial system is super opaque and it's not clear what benefit one can get if one doesn't understand the process or even the risk profile of it.
This lack of patient agency applies to all of medicine, really.
I plan to improve patient-doctor relationship in general. Gut tells me that enabling educative access to the basic sciences component of medical school and paring it down to patient specific focus, we can enable much higher patient agency through better patient-doctor communication and a deeper understanding of ones condition.
More importantly a better decision making process and ability to query and understand the doctor.
I've been through this with my wife and it's just so important.
Have you discussed anything about targeted therapies? For example, how the different genetic makeup of some tumors are used to treat them. Keytruda comes to mind.
I see where he discusses it. He said it only works for a small group and not for him.
He’s mentions trying drugs that target EGFR mutations, which I believe tries to stop the blood supply to the tumor. Targeting specific protein receptors, like HER2 in breast cancer, seems to be promising.
Thank you Jake, it's been real to follow these developments.
You've touched a lot of us, and if leaving impressionable impacts on others is the highest quantifiable order in this life -- I think this was a job very well done :) and you've inspired many to continue that cycle. Rest well, see you on the other side.
Reading your updates has been important to me since I started seeing your posts.
Thank you for taking the time and energy during the most difficult of circumstances to share your journey with the rest of us. I know it's given me a lot to think about and a lot to be grateful for.
Best of luck to you and yours as you come to the end of the journey. You'll be in my thoughts.
Your fighting spirit and clarity of mind have been an inspiration. Very few patients struggle on their own behalves as you and Bess have done -- and in such a flawed and labyrinthine medical-regulatory environment. Thank you for writing about it... I only wish they had made things easier for you. And I hope that the coming days bring peace and comfort.
Thanks for sharing your journey with the world. I haven't read them all, but I have read several and while terrifying I know they will help others navigating similar journeys.
Rest well and all the love for those close to you.
Jake, I have read your previous posts and am deeply saddened to see this post; if there are LOTR references to be made then perhaps the part in the Appendix where Aragorn tells Arwen that "beyond the circles of the world there is more than memory" can be mentioned.
You have been such an inspiration in how to make something impossible almost bearable. You are doing the hardest of hard things so well. Thank you for sharing and hope you find peace
I’m sorry for both of you. I thank you for your words. As someone who’s right behind you in line, your words mean more to me (and hit harder, and cut deeper) than I expect they do for many.
Take my love with you both. See you on the other side.
Go in peace. Through your writing you've made a positive impact on me, and I'm sure others in your time here. That's all any of us ever hope to do. Go in peace.
Gandalf also said, "End? No, the journey doesn't end here. Death is just another path, one that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it."
Also, props for a cool personal blog and project list, I'm listening to Phasmaphobe now... congrats on creating and publishing a full-length album! No easy feat.
Gandalf says this in the movies, not in the book. However the descriptive language is drawn from Frodo's dream in the barrow downs and his experience sailing into west at the end of LOTR.
> And then it seemed to him that as in his dream in the house of Bombadil, the grey rain-curtain turned all to silver glass and was rolled back, and he beheld white shores and beyond them a far green country under a swift sunrise.
But "sailing into the west" is not a metaphor for death, Valinor is not a metaphor for heaven (as it's a real place within LOTR world where e.g. Frodo dies). Gandalf's movie quote does not appear to be based on book material.
> But "sailing into the west" is not a metaphor for death, Valinor is not a metaphor for heaven
Tolkien wasn't a fan of allegory that's for sure and you won't find a 1:1 between his fictional works and his own religious beliefs but a devout Catholic like him was definitely channelling heaven as the new glorified Eden to some degree when describing the "undying lands" that were lifted up into the heavens after the corruption and treachery of Numenor and ruled by the great spiritual powers that rule as stewards for the Creator. The movie did paraphrase, and perhaps I'm wrong but I don't think its something that Tolkien would have been offended by.
Bon voyage, Jake. I follow in your steps from the same diagnosis. Thank you for bravely sharing your experience and helping others in similar predicaments <3
Thank you for writing such a transparent and deeply touching essay. Even if it was painful to read because the topic feel unsettling to me, it made me reflect a lot about life and gratefulness. I look forward to read the rest of the things you have posted
I watched your efforts and have tried applying them to my loved one. To be human, to be one with intelligence to figure things out as you have, the digital touch you have made, thank you. Go in peace.
Thank you for sharing your story, may the end come peacefully with family at your side, wishing you a safe journey to where we all must go someday to be reunited. My heartfelt condolences brother.
Wishing you the best Jake. Thanks for sharing your story with us. I sort of believe the little bit of what Douglas Hofstadter said in I am a strange loop, essentially, small bits of your soul live on in the rest of us who read your story and interacted with you here.
Thank you for documenting your journey, and sharing something so difficult and intimate with us. It is really eye opening. I wish your family all the best and hope you find peace.
Will your blog remain available to share with others?
I've been reading your writings for a few months and I can assure you that you're on a lot of strangers' minds, passively making positive change in other people. I wish all the best to you and your family.
Thank you for your writing. I'm sorry it has come to this, and I don't quite know what to write other than that you've provided lots of valuable insight to an area I was unaware of.
Hey this might be kind of a weird thing to say but screw it. I’ve been suicidal recently and seriously considered ending my life. One reason I have decided to hold on and get help is inspiring stories like your own. I look at how much dignity, energy, and love you have espoused even while having a terminal illness and I feel ashamed. Some people out there have been given so little and done amazing things with it, and I’ve been given so much and done nothing. In this strange way I feel like I owe you something even though you’re a stranger on the Internet. I want to be someone like you who is strong. Just wanted to let you know that.
With love, please consider - the "shame" you're describing is really something else in a mask.
Perhaps... a longing? Maybe this stranger has helped you find the place where you do truly long for life.
Let the feeling be. Don't label it shame. Don't label it longing. Just let it be. Give it space. Cry if you feel like it. Laugh if you feel like it. Just feel it.
And when you're ready to speak about this with others, there will be many, many willing to be there for you. You are loved.
Another perspective: shame can be good. Feel it. Shame for who you are can light a fire in you, can propel you into transformation. Shame for one's past self is normal, if one has undergone any growth, and in time one may forgive himself. But not now, not when you know yourself and you see all the ways you are lacking. Not when you are so wholly disappointed in your life that you want to end it. _Longing_ for a different life will not result in change. Shame, and deeply ruminating on it can. In time you will transform and can forgive the past self you are ashamed of, but not now in your time of desperate need.
I think it’s worth drawing a distinction between guilt, which can be positive, and shame, almost never. Guilt is feeling badly because you know you’ve done wrong. Shame is feeling badly because other people know you’ve done wrong.
I still feel shame can be noble. To try to live up to the example of others and feel ashamed that you are not anywhere near their greatness. Not guilty, because you have not done wrong, but shame, because you are not enough compared to another.
Please don't be ashamed for your thoughts, nor feelings.
Each of us have struggles of our own and we cannot compare our paths or strength with others.
Just because some people cope differently, doesn't mean there is anything wrong with you or the way you process pain. Each of us is unique, with our own backstory.
I have recently also struggled with the decision whether to end my life. I was afraid to seek help and to talk to a professional.
If you ever feel like you need someone to listen or just talk to, please reach out at Twitter or at <username>@gmail.com
I've been reading Five Chimneys by Olga Lengyel, a Holocaust survivor who went through the most terrible of ordeals. She became suicidal and a Frenchman who got her involved in the camp resistance told her that if there were just one reason not to do it, it was so she could do little things to make the lives of people around her better. She took this to heart and it pushed her through to eventual liberation and living till her 90s. I appreciate words are cheap, but I found this inspiring and a good way to think about life when all else seems lost.
It takes a lot of courage to write what you've put into words out in the world, even if anonymously. You have value and it is possible to find the help, support and love you need. You can do it; you are strong enough. Please reach out: https://988lifeline.org/
Thank you, Jake! ---and your wife --- for your links and great reading that highlight the importance of clinical trials for mRNA tumor vaccines! Will keep posting to HN her articles when they come out.
I’m with my wife Bess (https://bessstillman.substack.com/) and my brother Sam, and crying, but it is okay. At the end of Lord of the Rings Gandalf says to the hobbits, "Go in peace! I will not say: do not weep; for not all tears are an evil.” And that is how I feel now. Ending prematurely hurts, but all things must end, and my time to end is upon me.