[HN Gopher] Starting Hospice
       ___________________________________________________________________
        
       Starting Hospice
        
       Author : jdkee
       Score  : 804 points
       Date   : 2024-08-05 03:35 UTC (19 hours ago)
        
 (HTM) web link (jakeseliger.com)
 (TXT) w3m dump (jakeseliger.com)
        
       | jseliger wrote:
       | 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.
        
         | isotropy wrote:
         | Thank you for sharing so much of yourself with us these past
         | months.
        
         | block_dagger wrote:
         | 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."
        
           | chrisweekly wrote:
           | Great quote.
           | 
           | 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.
        
           | davidrupp wrote:
           | He did? I'm surprised to find a quote I'm not familiar with.
           | On what page of which edition did he say this?
        
             | simeonf wrote:
             | 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.
        
               | The_Colonel wrote:
               | 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.
        
         | voisin wrote:
         | 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.
        
         | SOLAR_FIELDS wrote:
         | See you in another life, brother. So long, and thanks for all
         | the fish.
        
         | bfdm wrote:
         | 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.
        
         | girvo wrote:
         | Rest easy, and thank you for sharing your experience with us.
         | I've read your words for such a long time now, and I'm happier
         | for it; thank you again
        
         | sydbarrett74 wrote:
         | Jake, no matter what happens in the days ahead, I wish you
         | peace and equanimity. Thank you for sharing your journey with
         | the world.
        
         | HaZeust wrote:
         | 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.
        
         | Herodotus38 wrote:
         | Thank you for your posts. They meant a lot to me and I will use
         | them to try and help others. They have helped me.
        
         | moshegramovsky wrote:
         | You inspired me to make changes I needed to make.
         | 
         | Infinite love to you and your family.
        
         | fady0 wrote:
         | Thank you for everything Jake, See you on the other side
        
         | stavros wrote:
         | This really sucks. I don't know you, but I don't want this for
         | you, but there's nothing I can do.
        
         | slazaro wrote:
         | 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.
        
         | vinnyvichy wrote:
         | 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-ce...
         | .
         | 
         | HN discussion:
         | 
         | https://news.ycombinator.com/item?id=36827438
        
         | noobermin wrote:
         | 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.
        
         | popupeyecare wrote:
         | Thank you. You don't know me but your story and life has had a
         | profound impact on my perspective on what's important. Thank
         | you.
        
           | zuckerma wrote:
           | Amen.
        
         | vertis wrote:
         | It has been heartbreaking to follow, but all the same an
         | important documentation. You are a true hero. I am at a loss to
         | know what else to say.
        
         | 2OEH8eoCRo0 wrote:
         | Thanks for sharing. Your dignity and courage is inspiring.
        
         | dthrowaway819 wrote:
         | 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.
        
           | swombat wrote:
           | 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.
        
             | mjdiloreto wrote:
             | 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.
        
               | smogcutter wrote:
               | 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.
        
               | mjdiloreto wrote:
               | 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.
        
           | petercooper wrote:
           | 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.
        
           | klohto wrote:
           | 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
        
         | A_D_E_P_T wrote:
         | 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.
        
         | toomuchtodo wrote:
         | Take care Jake. It was a privilege to follow along, and I wish
         | you peace on your journey.
        
         | dredmorbius wrote:
         | Thanks for everything you've written, it will be a useful
         | legacy to many.
         | 
         | Take care of you and yours as you can. My thoughts are with you
         | and Bess who has been a true champion through your ordeal.
        
         | ridgeguy wrote:
         | Godspeed, Jake. Thank you.
        
         | reagan83 wrote:
         | 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.
        
         | exmadscientist wrote:
         | Always appreciated seeing your "byline" on things around here
         | and elsewhere. I'll miss you.
         | 
         | Good luck, to the extent that's even possible anymore.
        
         | username135 wrote:
         | See ya on the other side. Or not.
        
         | docstryder wrote:
         | 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
        
         | keeptrying wrote:
         | 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.
        
           | jseliger wrote:
           | I hope too to accomplish at least two concrete ends:
           | 
           | 1. Help and educate other people who are suddenly facing the
           | opaque clinical-trial system:
           | https://bessstillman.substack.com/p/please-be-dying-but-
           | not-...
           | 
           | 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.
        
             | melling wrote:
             | 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.
             | 
             | https://www.keytruda.com/
             | 
             | Antibody drug conjugates also seem to be discussed often:
             | 
             | https://www.mdanderson.org/cancerwise/antibody-drug-
             | conjugat...
        
               | adamredwoods wrote:
               | In his blog, he discusses Keytruda.
               | https://jakeseliger.com/2023/12/19/what-if-things-go-
               | right-w...
        
         | kragen wrote:
         | goodbye. thank you for everything you've given us
        
         | jkuria wrote:
         | All the best to you Jake
        
         | andyjohnson0 wrote:
         | Thank you for sharing your journey, Jake. Go well, with peace
         | and love.
        
         | egeres wrote:
         | 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
        
         | epiccoleman wrote:
         | 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.
        
         | sizzle wrote:
         | 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.
        
         | renewiltord wrote:
         | Thank you for all the work and sharing your journey.
        
         | alspaca wrote:
         | Absolutely heartbreaking. Your writing has been a gift. Thank
         | you for everything.
        
         | bigDinosaur wrote:
         | 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.
        
         | anatoly wrote:
         | Thank you for everything.
        
         | adamredwoods wrote:
         | 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.
        
       | wheelerwj wrote:
       | "I wish it need not have happened in my time," said Frodo. "So do
       | I," said Gandalf, "and so do all who live to see such times. But
       | that is not for them to decide. All we have to decide is what to
       | do with the time that is given us."
       | 
       | Godspeed, enjoy your family.
        
       | sudohackthenews wrote:
       | Thanks for everything Jake. I only have a vague understanding of
       | what you are going through after seeing my grandma go through
       | some of the same things, yet I still can't imagine how hard it is
       | for you and your family.
       | 
       | Wishing you and Bess all the best and if you or her need anything
       | feel free to reach out. Godspeed
        
       | geocrasher wrote:
       | 3 and 1/2 years ago I lost my mate prematurely. A long protracted
       | illness with much pain and suffering. I'm sorry for you and your
       | wife are going through and have gone through. It is very hard.
       | 
       | There were a lot of things that helped me through. If your wife
       | would ever like to talk to someone who's been through it, even
       | though I'm a guy, she is always welcome to reach out to me.
       | 
       | Username at gmail.
        
       | kstrauser wrote:
       | Bless ya, Jake. Go be comfortable now, and may you and Bess both
       | have peace.
        
       | anthonygarcia21 wrote:
       | Thank you to you and Bess for your writing and sharing your story
       | with the world. I have found it to be personally very helpful.
        
       | monero-xmr wrote:
       | Here's a couple mind-bending NDE experience reports from doctors:
       | 
       | https://www.youtube.com/watch?v=JL1oDuvQR08
       | 
       | https://youtu.be/gpfriTZDWCY?t=2777
       | 
       | See you on the other side
        
         | bhhaskin wrote:
         | Thank you for sharing these.
        
         | dl9999 wrote:
         | These are very interesting.
         | 
         | I used to be convinced that NDEs were either made up, or the
         | brain rebooting or something like that. I'm not so sure about
         | it anymore. I'm not religious (not anti-religious either), but
         | there are a lot of options between nothingness and a religious
         | expectation of an afterlife. Maybe these NDEs are indicators of
         | something else. I was surprised to see that almost 20% of
         | people that "die" report them.
         | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172100/
         | 
         | Thanks for posting these.
        
           | Bluestein wrote:
           | > options between nothingness and a religious expectation of
           | an afterlife.
           | 
           | May I ask what you consider some of those are? Honestly
           | curious.-
        
       | leetrout wrote:
       | I highly recommend this film "Griefwalker" to anyone anytime
       | death comes up. I find Stephen's views fascinating and for an end
       | that meets us all we sure like to avoid talking about death.
       | 
       | https://www.nfb.ca/film/griefwalker/
        
         | sva_ wrote:
         | For me it's The Fountain.
        
       | DaoVeles wrote:
       | I have always like the quote "Death the price of entry you pay on
       | the exit". We all have to pay it at some point. All that matters
       | is that you had a grand time.
       | 
       | Take it easy. Have a laugh where you can. Embrace the love. And
       | take that final curtain call like a champ!
        
       | jsgih wrote:
       | Good wishes to you and your friends and family.
        
       | masteruvpuppetz wrote:
       | Reminds me of Novaspirit Tech's announcement that he's got cancer
       | :( [1]
       | 
       | So sorry to hear these incredible people's sufferings
       | 
       | [1] https://www.youtube.com/watch?v=aFh5AuV_CJU
        
       | floam wrote:
       | Thank you Jake. I hope at the end they can just .. ignore any
       | best practices of responsible narcotics dosing.
        
       | katzenversteher wrote:
       | I do not know you, but I'd like to send you and your family my
       | best wishes and empathy.
        
       | voidpointercast wrote:
       | You put words onto page with which given a thousand I could not
       | have equaled. We will all follow, in time.                   "I
       | see life as a roadside inn where I have to stay until the coach
       | from the abyss pulls up. I don't know where it will take me,
       | because I don't know anything. I could see this inn as a prison,
       | for I'm compelled to wait in it; I could see it as a social
       | center, for it's here that I meet others. But I'm neither
       | impatient nor common. I leave who will to stay shut up in their
       | rooms, sprawled out on beds where they sleeplessly wait, and I
       | leave who will to chat in the parlors, from where their songs and
       | voices conveniently drift out here to me. I'm sitting at the
       | door, feasting my eyes and ears on the colors and sounds of the
       | landscape, and I softly sing - for myself alone - wispy songs I
       | compose while waiting.               Night will fall on us all
       | and the coach will pull up. I enjoy the breeze I'm given and the
       | soul I'm given to enjoy it with, and I no longer question or
       | seek. If what I write in the book of travellers can, when read by
       | others at some future date, also entertain them on their journey,
       | then fine. If they don't read it, or are not entertained, that's
       | fine too."
       | 
       | Fernando Pessoa, The Book of Disquiet
        
       | delichon wrote:
       | Your courage in not withdrawing in your sickness, of being open
       | with all of us about your journey and what you've learned, is
       | heroic. It's an amazing example of how to be a mensch to leave
       | behind for your daughter.
        
       | ChrisMarshallNY wrote:
       | Thanks so much for sharing your struggles and wisdom.
       | 
       | I feel the world is a better place, for this kind of thing.
        
       | selimthegrim wrote:
       | I learned a lot from you Jake. I hope you two see each other on
       | the other side.
        
       | jrh3 wrote:
       | God bless you and your family. You are a brave man who has helped
       | many.
        
       | j_bum wrote:
       | Rest easy. My thoughts are with you and your family.
       | 
       | Your words have made a wide impact on this corner of the
       | internet, and I'm lucky to have experienced them.
        
       | causi wrote:
       | If our civilization survives, we will, one day, through one
       | manner or another, banish death. If that day comes, when it
       | comes, I hope Jake's name is remembered for the monument to all
       | who we lost, all of us who've had to grow and live and find
       | meaning under the specter.
        
         | Bluestein wrote:
         | > If our civilization survives,
         | 
         | ... that is to - perhaps - say "if we manage to survive the
         | 'collective' death that seems oftentimes inevitable" ...
         | 
         | > we will, one day, through one manner or another, banish
         | death.
         | 
         | How do I ever wish I had your certainty - I do not mean it as a
         | backhanded criticism. I mean it literally.-
        
           | kelnos wrote:
           | I don't know about banishing death entirely, but I do believe
           | (echoing the sentiment of "if our civilization survives")
           | that we'll significantly, massively increase life expectancy
           | in the next century (like by a factor of two or more), and/or
           | discover how to digitize or preserve brains to the degree
           | that we'll be able to live on in some capacity beyond the
           | deaths of our bodies.
           | 
           | If this does turn out to be true, it's a bummer that
           | many/most of us alive today are likely too early to benefit
           | from it.
        
       | DiggyJohnson wrote:
       | Be well. I'm so glad you are with people that care.
        
       | bironran wrote:
       | Lost my wife about 1.5 years ago. It was expected and unexpected
       | at the same time. Long metastatic cancer treatment that ended all
       | of the sudden, in a few weeks of unconsciousness ("coma") with an
       | auto immune brain disease, likely caused by chemo.
       | 
       | As the partner left behind, I nothing but empathy to Bess. As an
       | avid, ultra pragmatic, HN reader though, I've gathered resources
       | so I'll list them here:
       | 
       | Forums / chats:
       | 
       | https://www.reddit.com/r/widowers/ - This one I used immediately
       | after. Yelling into the void. Crying. Having other people cry
       | with me. Make sure I'm heard.
       | 
       | https://discord.gg/CFQfCdby - /r/widowers discord. This one is
       | "good" for the first few days / weeks / months, when the pain is
       | great and the sense of lost is overcoming and you just need
       | someone to talk with, someone who's been through this, right now.
       | Everyone is friendly, rules to keep things sane and not
       | triggering are in effect.
       | 
       | Facebook groups - I know, ugh. But it helps to see other people
       | in the same boat. Somehow. A little. For me it was "Young and
       | Widowed With Children" (well, me) and some of the black humor
       | groups e.g. "Widow(er) Humor". Find your tribe. It really does
       | help.
       | 
       | Books:
       | 
       | It's ok you're not ok - https://www.amazon.com/Its-That-Youre-
       | Not-Understand/dp/1622... - This is "the book". Everyone
       | recommends it and it's justified. If you can't bring yourself to
       | read, get the audible version. I did, it was easier to lie in bed
       | with eyes closed.
       | 
       | Irreverent Grief Guide -
       | https://www.amazon.com/gp/product/B08L5RRJ9D - this one is a "how
       | to" guide. I mean a real "how to", emotionally. I, and possibly
       | many on /r/widowers/ found it priceless.
       | 
       | Videos:
       | 
       | https://www.youtube.com/watch?v=dzOvi0Aa2EA - Huberman labs - a
       | really short video on how your brain needs to reorient itself
       | after loss.
       | 
       | Kids:
       | 
       | "The widow's survival guide" - https://www.amazon.com/Widows-
       | Survival-Guide-Living-Children... - "you're not alone in the
       | mess" kind of book. Again, audible version available.
       | 
       | Kids' books (mine was 3.5 so YMMV):
       | 
       | Reread over and over:                 - The invisible string -
       | https://www.amazon.com/gp/product/031648623X       - Fix-it man -
       | https://www.amazon.com/gp/product/1925335348       - Missing
       | mummy - https://www.amazon.com/gp/product/0230749518       - The
       | sad dragon - https://www.amazon.com/gp/product/1948040999       -
       | Something very sad happened -
       | https://www.amazon.com/gp/product/1433822660
       | 
       | Read once or twice:                 - Love is forever -
       | https://www.amazon.com/gp/product/0615884059       - I'll See You
       | In The Moon - https://www.amazon.com/gp/product/1989123309
       | - My heart will stay -
       | https://www.amazon.com/gp/product/0578794578       - The heart
       | and the bottle - https://www.amazon.com/gp/product/0399254528
       | - Always remember - https://www.amazon.com/gp/product/0399168095
       | - The garden of lost balls -
       | https://www.amazon.com/gp/product/B0BLQW27XX       - Gone but
       | never forgotten - https://www.amazon.com/gp/product/B09SNY9VF3
       | 
       | Therapy and meds:
       | 
       | Actually, therapy and meds before, if not already. Anticipatory
       | grief is a thing and processing it can make later days a bit
       | easier. Anti anxiety meds (NDRI) can create "inoculation" effect
       | to some extent. SSRIs probably as well. Understand depression,
       | the symptoms, the issues. Educate family and friends. Establish
       | rapport with a therapist.
       | 
       | Friends and community:
       | 
       | Expect loss of friends. It's terrible but it happens a lot.
       | Extremely common that friends will silently disappear after a few
       | days or weeks. Not even just joint friends. People are awkward
       | around grief. Community, however, does seem to work well. Rely on
       | them. Don't say no to food offers, it helps. Doordash! Don't be
       | shy about it, it's fine to eat junk food. Don't drink though and
       | don't get high, it deepens and prolongs the grief symptoms.
       | 
       | Calls:
       | 
       | Don't forget your family or close friends. I've had daily calls
       | with my sister. It helped a ton. Scheduled daily calls.
        
         | bironran wrote:
         | Forgot to add: Journaling helped me a lot. I favored writing
         | this as "letters" / "texts" to my wife. As if she's here, just
         | telling her about my day, feelings, emotions, what our kid did,
         | what happened around us, family and friends. Venting, crying,
         | blaming, being frustrated, being happy, being proud. All goes
         | in there.
        
       | chrisweekly wrote:
       | All love and solidarity your way. Thank you for your courage and
       | kindness.
        
       | viking123 wrote:
       | Thank you for everything.
       | 
       | My mom just passed from ALS and now this. It's so unfair that we
       | have essentially no working treatments for these, even though
       | they always tout how advanced medicine is but I feel like it
       | really is not advanced at all
        
       | NeutralForest wrote:
       | Hi Jake, I lost my father to cancer this year, he was 59. I hope
       | you know your memory lives with the people that are with you, now
       | and in the future. I understand what your family is going through
       | even though I can't understand your pain, thanks for putting your
       | writings out there, take care.
        
       | bufordtwain wrote:
       | Just wanted to say thank you and farewell. You are in good hands
       | with hospice.
        
       | SoftTalker wrote:
       | Sad reminder that we are all here for a limited time and we don't
       | really know how long that will be.
        
       | Taikonerd wrote:
       | Goodbye, Jake. I enjoyed your blog, and I felt like I knew you,
       | in the way one does when one spends hours reading someone else's
       | thoughts.
       | 
       | I'll miss you.
        
       | starkparker wrote:
       | My partner died of an internal SCC in their early 40s during the
       | COVID-19 pandemic lockdowns, over a course of 9 months.
       | 
       | After the tumor board of the only cancer treatment center both
       | covered by our insurance and willing to take us on refused to
       | pursue anything but standard ovarian chemotherapy (which didn't
       | work at all on ovarian SCC, which we already knew). Because of
       | travel restrictions and the total lack of vaccines at the time,
       | we couldn't travel to seek more aggressive treatment, so we
       | pursued clinical trials.
       | 
       | My partner qualified for a trial only after chemotherapy started
       | doing nerve damage, and was approved only after being judged too
       | ill by the oncologist to take the drugs when they finally
       | arrived. The courier showed up with $20,000 of useless drugs two
       | days before hospice started. After my partner's death, I was told
       | to dump them, unopened, after begging the oncologist and company
       | to find someone else who could use them.
       | 
       | Bess' advocacy for access to trials for terminal and near-
       | terminal patients is invaluable. If there's anything people can
       | try to do, it's to help in this effort long before you or a loved
       | one become too sick to benefit from it.
       | 
       | Jake has a hard road ahead, and so does Bess. All we can do is
       | push to make sure nobody else has to fight as hard for, or be
       | outright refused, the ability to fight for even potentially
       | effective treatment.
        
         | hrkfmud50k wrote:
         | that's a tragic story and I'm sorry for your loss. did you
         | consider taking the medication anyway in defiance of the
         | oncologist?
        
       | joevandyk wrote:
       | I hope this is an appropriate place to ask.
       | 
       | Say I am eating well, exercising consistently, getting enough
       | sleep.
       | 
       | For a male in his 40s, what are the best bang-for-the-buck ways
       | to detect cancer before it becomes life-threatening?
        
         | cgijoe wrote:
         | Talk to your doctor, and ask to be screened for all common
         | cancers. A colonoscopy is in your future (I just had one). Also
         | ask for a Prostate-Specific Antigen (PSA) Test. Also look into
         | the HPV vaccine.
        
           | bigDinosaur wrote:
           | HPV vaccine has to be the biggest bang for buck. To anyone
           | reading this, you should get it at any age because you likely
           | haven't been exposed to _all_ the strains that e.g.
           | Gardasil-9 protects you from. You should also get it if you
           | 're male despite it being initially known as the cervical
           | cancer vaccine because HPV causes oral cancers and you also
           | don't want to potentially be a carrier.
        
           | timr wrote:
           | Don't do this. Nearly all cancer tests are overly sensitive,
           | and not great at detecting the cancers you care about (the
           | ones that will progress).
           | 
           | If you run out and get a bunch of random cancer tests, you
           | are basically ensuring that you will get unnecessary and
           | painful treatment for a finding that probably wouldn't have
           | harmed you in the first place.
           | 
           | It's not a satisfying answer, but it's true. The reason most
           | cancers are found late is because there's no effective
           | alternative.
        
         | doctoring wrote:
         | Whole body MRI is fairly available in major metro areas, though
         | not cheap and not very sensitive or specific.
         | 
         | The Galleri blood test screens for a range of cancers
         | (sensitivity varies by cancer) and is ~$900, although you need
         | a doctor to order it. You also may not technically be within
         | the intended use population unless you have some risk factors
         | (e.g. you are older than 50, or have family history of cancer).
         | 
         | Colonoscopy is a good idea, given the rising rates of colon
         | cancer among younger adults.
        
       | NotYourLawyer wrote:
       | What a weird time to come across this blog. I went to the
       | dermatologist _today_ for a biopsy. I'm gonna spend the next week
       | obsessing and worrying about it until I get the results.
        
         | UniverseHacker wrote:
         | I wouldn't worry too much, while skin cancer is common, only
         | about 1% of skin cancers are serious (melanoma), and even that
         | has a 95% survival rate if you catch it early.
        
       | rawland wrote:
       | Thank you, jseliger. Thank you, HN.
       | 
       | Often I feel very at home here. A community which designed ethics
       | into its very core.
        
       | breck wrote:
       | In May 2024 you were very skeptical of ketones/ketosis, in favor
       | of chemotherapy [0].
       | 
       | Do you think it might be a good idea for others in your situation
       | to learn about ketones from the atomic level up, and why there
       | might be good first principle reasons based on physics,
       | chemistry, and biology for people to be talking about this?
       | 
       | Do not go gentle into that good night. Godspeed.
       | 
       | [0] https://jakeseliger.com/2024/05/28/chemo-versus-carrots-
       | when...
        
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