My short bio: My latest book is "Social Architecture", a HOWTO for building on-line communities. My other books are "The Psychopath Code", "Culture & Empire", and "ZeroMQ" (O'Reilly). You can read them free on GitBook. I've been programming since I was 17. Since 2007 I've been the founder and benevolent dictator of the ZeroMQ community (it's free software for high performance distributed software in any language).

Five years ago I had cancer of the bile duct, and last month CT and PET scans and biopsies showed that it's come back (metastasis) in both lungs. This is an aggressive cancer that doesn't respond well (if at all) to chemotherapy, so I'm preparing to die. Pragmatically, this means winding down my projects, preparing my young kids for the change, and planning my death.

In Belgium, my country, euthanasia is legal and I will use it when things go south. To be clear, I'm not sure when I'm going to die. My cancer might respond to chemo. The love from my friends and family and cats could magically cure me. What I know is that my lungs work a little worse every week, and my oncologists aren't even trying to pretend there's hope.

My proof: My article, "A Protocol for Dying contains a scan of the summary report from my hospital stay. Scroll down. It's in French, and explains my cancer and the treatment with FOLFOX chemo. I've also a link back to this AMA on my blog home page.

Note, I'd started an AMA yesterday which the mods removed because the title seemed to promote suicide. Hence the new AMA today.

Edit: thank you for the gold, kind stranger! This is my first gold ever on Reddit. I feel honored. Am currently getting FOLFOX pumped into me, so am continuing to answer questions. Happily the clinic has WiFi.

Comments: 225 • Responses: 93  • Date: 

ethan_reads51 karma

What can we, in the United States, do to get euthanasia akin to the Belgian system?

I would be a lot happier knowing that I could end my life before my body started painfully shutting down on it's own.

pieterh31 karma

This is probably the best question in the AMA and needs to be top.

Fight for it at state level. Planned death is IMO a basic human right. It is like free access to recreational drugs: a matter of individual liberty, the choice to not suffer, and the freedom from oppressive "moral" codes set by others.

Fight for it. Find organizations, join them, give them your time and money, help them with your talents. It is a matter of telling real peoples' stories, both happy and sad. It is a matter of setting faces and families against the grim lie of "death panels". It is a matter of taking this to law makers, at state level, over and over, until they realize it.

joethetipper31 karma

What are some Bucket List style things you want to do before you die?

pieterh81 karma

I've done a lot in my life. It is really nice to be at home, with my kids. Like I wrote a while back, who needs a bucket list when you have love?

I do want to finish one more book though.

joethetipper15 karma

Thanks for the quick response. You have a good outlook on the situation; I admire you for it.

Do you have any regrets? Things you wished you had done?

pieterh44 karma

Do you have any regrets? Things you wished you had done?

Not that I can think of. We all do our best, don't we? Even when it doesn't look like it, every individual is always playing their best game, whatever it is. That's how I see it. Regret is a pointless emotion then. Same for wishing things had been different.

pixiedonut14 karma

You are a beautiful person and I aspire to have your peace of mind.

pieterh12 karma

Well, thank you, you too. We're all beautiful on the inside. I mean, seriously, take a good look at how subtle and sophisticated our bodies and minds are, and it's astounding. If you want peace of mind you could do worse than read my book The Psychopath Code (that link takes you to a free version), and read the section on emotional grounding.

tycoon17720 karma

Am I correct in thinking you are going the same route as your father in being euthanized? If so, will you have anyone three with you? What do you want your last days to be like?
Thank you for the AMA.

pieterh47 karma

Yes, given that my cancer will spread down from my lungs into my stomach, then to my digestive system, meaning I'll be unable to eat and will be in real and constant pain, and will lose weight and then start to have circulation problems... I will go the same route as my father.

I'll let anyone be there who wants to be there. That's a personal choice I won't influence. My kids, I hope, will be there so they see death close up and it loses its mystery and dread for them.

I hope my last days are well drugged up. :)

jhiva18 karma

Pieter, I just learned about the terrible news. Saddens me deeply, as a ZeroMQ user for years.

Before I forget, could you please post your paypal address here?

Just a small anectode that shows there's always a sliver of hope: My brother got his death sentence two years ago, lung cancer and liver cancer. The chance of survival was roughly zero. But he responded to chemo, and is 100% free of cancer. No miracle cures, just chemo. This level of response is rare, but not unheard of.

Hope is a dangerous beast, but announcing your death before finishing the standard chemo rounds may turn out to be a bit premature. Crossing fingers!

pieterh25 karma

My paypal address is http://paypal.me/Hintjens.

Nice to hear about your brother. My greatest hope (if I admit to any hope at all) is that I get ready to die, prepare everything, lie down in my coffin, metaphorically, and then realize I've gotten better and have to start apologizing to everyone for the drama... :)

ewindisch12 karma

Pieter,

In your blog you mention your young children and the resources that they'll have to see you, such as Youtube recordings. You have been very organized in transitioning the ZeroMQ project over to the community over the last several weeks. As with the community, are you preparing archives, books, or other materials (digital or analog) for your children? If so, what are you archiving and in what formats?

Thanks again for all your hard work and contributions over the years.

pieterh23 karma

Hmm, good question. I've been deliberately accumulating material for my kids to read and think about, for years. It was part of the reason I became a writer, and the main reason I wrote a book like The Psychopath Code. For instance I've kept a diary since my daughter was born, addressed to her, and will give it to her in printed book form. She'd lose a USB drive. A book is easier to hold onto.

Yet the most important gift, I think, for my children, is what I've taught them over the years about self-reliance, standing up to bullies, exploring the world without fear, and taking responsibility for creating order out of chaos. They are young and will forget me, especially the youngest (five), yet I'd like to believe the last years (and we spent every possible moment together, doing so many different things) are deep inside them and will be the main resource I pass on to them.

Even this, dealing with incoming death, is something they'll watch and learn from. Everything is a lesson, if you are equipped to learn.

hellenkellercard10 karma

Don't forget to talk about yourself. While the life lessons will be important, they will wonder about all those small things, like how you got into trouble as a kid, or what your favorite ice cream flavor is, or any other story they can find themselves in.

pieterh6 karma

When my daughter was born twelve years ago I started a diary, not my best writing, but every time I had a free moment in an airport or train station I'd write a paragraph. That's one thing I'll give my daughter.

As for ice cream my kids know I don't eat the stuff (sugar is a toxic drug, why are people still eating that crap??), and I never got into trouble as a kid.

Hah, I collected all my digital photos since my first ever, and got them onto a 128GB USB stick. More presents for my kids, and my family. It was amazing to watch my kids grow up all over again.

Bytonia1 karma

Is it morbid or neat to pre-record their "happy birthday" videos for the coming years? Like a neat annual time capsule for them. Although I agree with the other poster that "verkoop de huid niet voor de beer geschoten is" :-)

pieterh2 karma

It's neat from a certain perspective, and yet seems entirely empty and meaningless. A general rule of thumb: anything that might seem cool in a movie is garbage.

fluffyponyza10 karma

Pieter, I just wanted to thank you for opening your home up to me and to the Monero community for our Belgian meetup last year. More than that, I want to thank you for the wisdom you imparted late into that night and subsequently. You have given me a great deal of insight into what it is to run a successful open-source project, and I am forever grateful.

Since this is an AMA, my question is: family and friendships aside, what do you view as your legacy, the mark you're most proud of leaving?

pieterh17 karma

There are three sets of things I'm really proud of. First my children, who astound me every day with their quiet confidence and maturity. Second, my books, which speak for themselves. And then my communities, my friends and colleagues, and the work we've done together.

eilah_tan8 karma

Hi Pieter, thanks for doing this AMA, and thanks for being so open about one of the last standing taboos of our society: dying.

a bit of a morbid question, but do you have any idea what it will feel like to die? the process your body will go through? have you done any research on the technicalities? I'm wondering, since you seem to have accepted the fate on a more cognitive level, if you are now becoming more fascinated with the process of something every human goes through, which we are so uninformed about...

pieterh19 karma

Yeah, let's smash this taboo :) And especially the wall of silence and emotion that still exists between the living and the dying.

Yes, I've a pretty good idea of what it feels like to die, in the specific circumstances of euthanasia as performed in Belgium. I watched my father die like this. One injection sends you to sleep, into a near coma. The second, after five minutes, stops your heart.

It is instantaneous. One second, rosy pink. The next, white. I'm sure the brain takes a few more seconds to fully shut down yet since the conscious mind is disabled, there's not going to be any "feeling" going on.

eilah_tan3 karma

that sounds like a pleasant way to go :) I know you haven't requested the euthanasia yet, but have you made any final plans on what you want to happen on your death bed? songs to be played, last things you want to say,...

pieterh15 karma

The last thing I want to say is:

I have no last words.

Also, next month I'm organizing a wake/bbq/riot/party at my place and I expect a hundred or so people to turn up. Should be fun. :)

eilah_tan5 karma

love it.

I do feel like this is also the perfect opportunity to leave a few pranks here an there for when you're gone.

pieterh7 karma

Well, say I've set up a few pranks... I'm hardly going to reveal them on Reddit, am I? :)

eilah_tan3 karma

can you set up an automatic generator to post it after your death? (have you ever read Daemon :p? )

pieterh7 karma

I don't really have any pranks. Seriously.

danup307 karma

Sorry to hear about your illness.

Has the new diagnosis changed your day to day life in any dramatic way?

pieterh11 karma

Yes, the change has been dramatic. I've been so heavily involved in the free software community for instance. One of the first things I did was look at all my responsibilities and assets, and try to find safe homes for them. Then I made that happen, and have now mostly stepped back from e.g. the ZeroMQ community that's been my main focus for years. It was really nice to see how other people, my friends, took over and took charge.

The focus on "what must I do in the next month?" shifts everything.

Also, I'm just physically weaker and unable to e.g. move around very far from home. So I've been welcoming a stream of friends and family to our home, which was rare before.

zerbey6 karma

Thank you for your bravery in sharing this with the world. I've seen the end results of lung cancer up close and it's not pretty. Please, whatever you plan on doing before you get too sick do it soon as when the end comes it comes in a hurry.

So, my question is do your children plan on continuing your legacy or do they have other goals?

pieterh9 karma

My children are too young to care about the details of my life and work. They'll find their own path as they grow up... I hope it's a happy one.

rillaZee6 karma

How's it going?

pieterh24 karma

Honestly, pretty good. I'm mostly cheerful anyhow, yet the diagnosis and reality of dying in the near future has put an edge on it, my mind is super active. Last week I wrote a new book (Social Architecture), taking pieces of writing I'd not yet published and editing it into shape, formatting and publishing. It took an hour and a half total. So it's going pretty well, I'd say. :)

XyZeR3 karma

Hi Pieter, i used to play djembe with you some years ago (busking in Antwerp @ the Meir) Do you still play the djembe by any chance or is that become to hard physically for you?

pieterh5 karma

Seriously, Mr. R, is that you? Wow... motherfucker... that is... incredible.

Reddit, you gotta hear this story. This is 1992 or so. I'm just starting to drum in public, and I find myself with Mr R. and two Flemish girls, the four of us played together pretty much every summer Saturday afternoon and Monday evening for years. We had an occasional frontman, Senegalese dude called Moussa. We called ourselves Waka Waka and played cheap birthday party gigs. Shop keepers would come to chase us away, so much noise we made. But we all had licenses, permits from the City of Antwerpen, letting us play 45 minutes in specific spots. So the police would come, check our papers, let us play. The crowds loved us! Then one day I guess we grew out of it. I started playing semi-pro for African dance classes, then moved to Brussels.

So yes, I still played every week until a while ago. I just recently repaired my professional drum and then gave it away.

Edit: if you're not Mr R. sorry :)

XyZeR1 karma

Hehe, it's not mister R but mister S (i'll PM you my full name) and i was part of the group (and the groups after that with Moussa and mister R) as well, you lived right next to the Coninckplein back then . Good times indeed ....i still miss the thrill of playing in a packed shopping street..

I still play (on my own at home) djembé and congas , and still see mister R, i'll let him know about this crazy online encounter.

I think that i have some pictures of that period somewhere...I'll snoop around and i'll pm you if i find anything.

pieterh1 karma

Heh. Sorry for the poor memories. I got the photo, good times :)

PIN-Code-Robin-Hood3 karma

What kind of wisdom you can share with, say, a 25 year old wondering about how to go about things in life? (Family, future loved ones, things to always consider, etc)?

I'm sorry to hear about your diagnosis. Even though I don't know you, I'm proud of the things you've accomplished in your life. I cant begin to describe how awesome some of the things you've accomplished are!

pieterh2 karma

Well, everyone is different and what works for one person may not work for another. I'd say, work hard, be happy, don't be afraid to take small risks with people and projects, and read my book on psychopaths, which may teach you some useful stuff.

PIN-Code-Robin-Hood2 karma

I'm pretty convinced my ex is a psychopath, so I'll definitely look into your book!

Thank you!

pieterh2 karma

For what it's worth, be careful about slapping that label on people, especially when you are/were personally involved. I'm not saying your instinct is wrong... often it's our best tool.

iddn2 karma

Is XPUB/SUB used for when one subscriber can receive the same topic from several publishers?

pieterh1 karma

It's used for publishers that want to receive subscription messages back upstream from their subscribers. This lets you build repeaters (proxies). I've a blog post that explains this.

Sekenre2 karma

In all of your writings I have not seen your children's mother mentioned. Is she still involved with your kids? How will you arrange custody?

Sorry if it's too touchy a question. It's something I'm concerned with in my own life.

pieterh2 karma

You're perceptive. Let's just say that's one of the larger unsolved problems in my life and I hope, deeply, that my kids have internalized sufficient tools for dealing with it when I'm no longer there to act as buffer and provide subtitles and structure.

poddiean2 karma

How about turning your blog and this IAMA into a book an Amazon for future generations?

pieterh2 karma

Most of my blog is/will be put into books, for instance the Social Architecture book I wrote last week (hah, I'm so pleased with myself to be able to put together a new book in an hour or two) mainly remixed articles from my blog.

As for wrapping up this IAMA... maybe. Do you know a tool that can extract a Reddit thread as plain text? If so, it's a quick job. And it's a great idea, to capture these questions and answers.

xDylan25x2 karma

Where can I got to read your blog, books, etc?

pieterh2 karma

Everything is on http://hintjens.com.

poddiean2 karma

textise.net exists, use Options to turn off links. Doesn't do indentation of threads well (at all?) though.

Textise for Firefox used to work well, but haven't tried it for a long time. Something similar exists for Chrome, I'm sure.

pieterh1 karma

Thanks, textise.net did the job. I'll flatten out the thread to make it easier to read. If it works, I'll include that in a new book I'm putting together.

poddiean2 karma

Your last tweet seems to indicate things are getting better. What does "bloodwork clean" mean?

pieterh1 karma

Since chemotherapy affects the immune system it makes you vulnerable to infections. I'd had a bad lung infection up to a week ago, so they were concerned that it might come back. In which case, back on antibiotics and chemo gets postponed. So that is clean: no infection. The blood tests also covered stuff like liver, kidney and pancreatic functions. My oncologist is kind of waiting for the cancer to work its way downwards from my lungs. Every time she checks me, it's "does this hurt?" as she squeezes my abdomen from all sides. Blood tests show everything's still working fine.

I also had an xray of the lungs which shows the liquid on my lungs (from the infection or the cancer, it's unclear) is going away. That is great because it at least means I can breathe easier.

thebys232 karma

Before all the recent changes, what did your writing process look like? What did a typical work/writing day look like for you? What advice would you give to other writers?

Thank you for this AMA (and for your previous one!).

pieterh1 karma

I'm constantly writing something, whether it's tweets or comments on Reddit or small blog posts, or a book. To make a book, I generally have to stop all other work for a few months, then just focus on it. I've made tools so I can write plain text (kind of a markdown format) and turn that into polished books instantly.

My advice to writers is to write. Much of what you write is trash, practice, sketches. Don't take your own work too seriously. To produce final text takes time. I will often rewrite the same text several times until it's right. I like tools like http://www.hemingwayapp.com/ to keep my prose simple and easy to read.

And then I rely a lot on other people to read and help fix the text. So I put my work on github and accept pull requests.

Ale_handro2 karma

I'm a writer. I write short stories, prose, and poetry. I have a website where I put all my creative endeavors in. So many questions I'd love to ask but if you had one book that completely changed your life. What book would it be? And any tips on finding inspiration to keep writing. Ps. I'm gonna be reading your books and I can't wait.

pieterh2 karma

I write to tell stories that I've found interesting. For me, writing is a way to understand difficult questions by teasing them apart and collecting small answers into a coherent whole. I'm constantly collecting small pieces of understanding, knowledge that I see elsewhere and find accurate, and so on. That makes the writing process easier, there's no blank page.

As for books that changed my life... I think writing my books did change my life, far more than reading any books. Really, once you've worked through a deep story and figured out a lot of the answers, it changes your perspective on life. I hope when people read the results it also gives them some of that.

tl;dr keep writing, all the time, and then when you need it, you can pull that together into articles, a book, whatever you need to.

1ballwonder2 karma

I have been working in IT for about 18 years now. I am more on the technical side of things I do security and networking, because of this I work with a lot of people that are on the scale. Sounds like you have had experience on both sided of this coin. I am highly social I can talk myself out of a box, conferences are a drug for me. I work with with a guy that shakes when I talk to him outside of a meeting. He is on the scale for sure but he does a shit ton of work, just sometimes in the wrong direction. How do I bring people like him to be part of a team? How do I get them to know when they should give people a heads up about a system change there making that could effect everybody? How do I interact with them outside of meetings and make them feel safe?

pieterh1 karma

Read my book Social Architecture, for a start. That will help you build teams. One key part is working organically via small focused problem statements. It's encapsulated in our C4 process. With this it's easier for smart people to work together in the right directions. Make people feel safe by accepting their patches smoothly and eliminate meetings entirely if you can. Ban systemic changes. Force smooth incremental testable organic growth.

Really, if you study how we build software in the ZeroMQ community (that C4 RFC is key), you will find answers to most if not all your questions here.

OrangePhi2 karma

Last semester I had to do an IRC Server in C for a project. Teacher said that whoever did it with ZeroMQ got extra points. None of the students knew about it, but me and my friend took the risk of stepping out of our comfort zone and learning ZeroMQ. It was totally worth it! it made things so much easier and I'll definitely use it again. The guide is really well written. Thank you so much. I really admire your work and I'll make sure to read your books.

If you could become a teacher, what subject(s) would you like to teach?

pieterh1 karma

First, you had a cool teacher and you can tell him/her I said so. I hope you used CZMQ.

Second, you used raw (STREAM) sockets to implement the IRC protocol? That is extreme. Well done!

Third, I am kind of a teacher, informally, and mainly I teach people how to work together to make better software.

WillyNaps2 karma

Hello! I've read through the other comments, so now I feel stupid asking a question as simple as this: Do you have a favorite quote? If so, what is it?

pieterh1 karma

All life is problem solving

By Karl Popper. It's the title of one of his books.

TBEITBN2 karma

What kind of books do you enjoy?

pieterh4 karma

Honestly, the books that I love reading the most are my own. This sounds awfully narcissistic yet it's so. Reading my own words is like looking at my own code. I'm constantly amazed and thinking, "who wrote this stuff, it's such good shit!" and then I realize it was me and I'm slightly shocked.

TBEITBN2 karma

What is your proudest work so far?

What are you afraid you won't be around to see?

Have you already talked to your kids about your euthanasia plans? How old are they? Do you think they'll understand?

As a parent, this is one of my biggest fears. Cancer taking away valuable decades with my son. My heart goes out to you and your family.

pieterh1 karma

I'm content with my books, my kids, my community of friends and co-programmers. I'm sad I won't see my kids grow up. My kids are 5, 9, and 12 and know what euthanasia means. We experienced it with my dad, a couple of months ago.

Not being there for them sucks yet it's just fact. Dealing with it will be part of their life experience.

lazgrl2 karma

How have you brought the news to your children? Do they understand? Was it heartbreaking? What is one of your favorite memories with your children other than them being born?

pieterh1 karma

I explained this in my article A Protocol for Dying. It was heartbreaking, telling them the news when I got my first scan results and my oncologist called me at home to tell me, in her opinion, it was cancer and my lungs were "filled with it".

That was one moment though, and since then we've settled and there is no crying or weeping. My kids don't really understand yet (who could?) so it's a matter of giving them the tools for figuring it all out later in their lives.

My kids... our best times were when we went camping together, me and that wild gang. Last year we went camping three times. Every chance we got, away from the house, car filled with stuff, down to France and into our tent.

Resumeblank2 karma

Pieter, I've always worried about cancer, as it runs in my family -- especially lung cancer.

When did you realize that something was wrong, to the degree that you went to the doctor to get it checked out?

pieterh1 karma

I had a dry cough that wouldn't go away, and eventually I realized it wasn't a flu. Losing weight, sleeping poorly, and stopped with work. You can literally see it on my GitHub profile.

TayBronte2 karma

Thank you for your contribution to free software. I imagine that was an immensely fulfilling route to take! Do you have any particular sentiments from the free sw journey you took, or encouraging thoughts for helping those lesser-ethically-cognizant computer users mind licensing of software?

Again, thank you so much for understanding the magnitude of the issues at stake with free software and software patents, and for mustering the motivation to act about it. You are a savior on the level of Jesus. I have just been introduced to the FFII thanks to this ama, and am looking forward to learning more about it.

pieterh2 karma

Licensing is just a pragmatic matter of community building. I discuss this in my book Social Architecture. It's not about morality or beliefs, at least not for me. I want to build systems that last and are successful and from much trial and error, I've concludes that share-alike licenses are the best choice.

I got into software patents for pragmatic reasons too. We'd built a product (SMS group chat, quite neat) and got into legal trouble with a patent troll. He attacked our clients and partners and we had to cancel the project. It was a huge loss and really pissed me off, and I realized the whole industry was just scared shitless by the terror of the same happening to them, so they all paid the troll to leave them alone.

And then a friend asked me to present myself and my experience in a debate in the European Parliament, and it was good, and I felt, "wow, at last people who know how corrupt this and are willing to fight it."

Please don't compare me to zombie space ghosts... :)

deetsigcorp2 karma

I'm getting ready to start school for software development. After already starting in networking with the military. Any pointers?

pieterh1 karma

The best I can offer you are my books, especially Social Architecture and the ZeroMQ Guide (online, and from O'Reilly). I'm writing a new book, Scalable C, but it may not be done real soon.

deetsigcorp1 karma

I understand. Due to unfathomable circumstances. I am very sorry to hear about your cancer. And I wish I was some type of medical guru to help you out with such.

pieterh3 karma

:-) I'm surrounded by medical gurus. They're called "doctors" and they do their job really, really well. Don't worry.

tombie_harris2 karma

Is there any cure for your cancer? why do you go on writing?

pieterh1 karma

I'm a writer and love writing and will continue as long as I can. My cancer has no cure, in theory. In practice, well, we will see... cancer is a complex disease in which every type of cancer is different, and how it expresses in each individual is different.

Techwood1112 karma

Your name sounds really familiar. Have you written some Mac utilities or something, perhaps mid-80s or 90s? Is there a place to see all of your works by name?

pieterh1 karma

I wrote free software starting in the 90's. My friend Ewen McNeill put up our company website as it was in 1999, a lot of the stuff on it was my work.

meowpixel242 karma

If you were given the choice to restart your life, would you? Or would you proceed?

pieterh2 karma

Do I get to keep my mind as it is now, or am I reverted to the state of a baby? In the first case, yes, though it's going to be freaky. I mean, there I am in kindergarten and the teacher says "how much is one plus one?" and I'm going to be like, "it depends on your values for one, anything from one to three" and I get expelled for being a smartass, and I get a drinking problem, and I'm not even five yet.

On second thoughts, "no" either way. I'd rather be able to see my kids grow up, and that's really the only thing I'd choose, if the world worked that way. It doesn't, so I don't.

Teh3ggM4n2 karma

What do you need help with today? I am a writer/coder/digital artist. I have a degree. I want to learn. What can you teach me o master of freedom of expression?

pieterh4 karma

:-) Teaching people is work. If I can give you one piece of advice, it is to find free software/open source projects you like, and become part of them. Don't get over-attached unless you find a really nice community. Use the experience to force your best work, in public view, and together with others. My only professional regret was to spend years of my life making closed projects for clients who inevitably threw my work away sooner or later.

The best way to learn is to work with others. You could do worse than toodle along to the ZeroMQ community and get involved.

amazingama2 karma

If you don't respond well to chemo what is the estimate doctors have given for how long you will live?

pieterh2 karma

A few months, is their guesstimate. They don't really know because this is a rare case in the West. Some background: read /u/mrynx's comment about opisthorchiasis being a neglected disease. This is what caused my cancer as far as I can tell. It's a killer of the poor in SE Asia and almost unknown in the west. There is little data on it, especially for metastasis (I was so lucky to have it removed surgically the first time).

So what do we know: the cancer is aggressive and grows fast. It does not generally respond to chemo. It is in both lungs. (I haven't seen the PET scans yet, just got a copy of the CT scans...) I'm already coughing and every few hours my lungs get clogged up and I need to cough to clear them until I vomit. It ain't pretty.

poddiean1 karma

Is lung transplants an option?

pieterh1 karma

No. Two or three reasons. One, that is a massive operation and by the time they'd find a suitable donor I'd be dead anyhow. Two, metastasis means the cancer is all over the place. Even if they could fix my lungs surgically, it'd appear in my intestines, liver, bones. There's no escaping this after a certain stage. Chemotherapy and other whole-body treatments (immunotherapy?) are the only possible solution. Even radiotherapy can't deal with metastasis except to shrink cancer in one part of the body temporarily, to alleviate things for a while.

poddiean1 karma

Hrm, sounds like all focus should be on solving the technical challanges of head (uhm, body) transplants :)

I suppose full body donors are rare until we get synthetic versions.

pieterh1 karma

I kind of like my body. Still I guess eventually it'll all be virtualized, and left behind, won't it...

leaolaranja2 karma

Do you feel like you'll let a good legacy to the world, since you already published some books, and one of them belonging to the greatest programming publishers?

pieterh3 karma

I'm pretty happy with my books, especially since being a writer was my dream since I was young. When I was six or seven I won a 'prize' at school (for something stupid like doing my homework every day properly) and chose Roget's Thesaurus as my reward. I still have that book.

bolo942 karma

Hello Pieter. I'm a medicine student, one day maybe I'll become a doctor. I'm in the hospital as an intern every day, and I see a lot of patients with many different stories. There's a question I always wanna ask them, but never get the chance to do, so I'll try with you on this ama

How do you see your future? Does the word "future" mean anything to you, if so, what?

Thanks a lot and good luck man

pieterh8 karma

I see my future short term, obviously. Hours, days, weeks. No summer vacation, no thoughts about a meeting in a month (except that wake/party/riot I'm giving), no conference trips. It's like when you're driving a car down a great long desert road and you know you're running out of gas, and it's a matter of when, not if. There's no big city waiting for you, just beautiful scenery, and hopefully the car will run out of gas somewhere pretty.

So my focus is really technical: hunger, eating. Breathing difficulties, so move around more or switch back to oxygen. Clogged lungs, so cough and try to control the vomiting. Kids back from school, so play with them and hug them and play some piano to piss them off. And so on.

In hospital it's even more so: all "normality" ceases to exist and you focus just on the ticking clock and the minutae of pain and medicines, discomfort, needles, round-the-clock blood pressure and oxygenation measuring, and so on. There is no future until just before you are released and even then it's measured in "how long before I get home."

poddiean1 karma

The chemo apparatus seems rather portable. Any possibility of administering the meds at home?

pieterh1 karma

How it works:

  • Four hours of different chemicals, interleaved with flushing solution.
  • Small balloon-in-a-jar of final chemical, with slow-release valve that pumps it out over 48 hours. I have to carry this small package with me.
  • Friday they remove the needle stuck into my chest port, and it's done.
  • Nausea and vomiting starts now and continues until Saturday or so or until the meds stop it. (Have prescriptions.) They never administer the meds at home (at least in Belgium). Technically I'm checked into hospital for the day. I assume there are legal rules about transporting and using the chemicals only within a controlled environment.

poddiean1 karma

Sounds like you're a tough son of a bitch, in the positive sense :) This is the most amazing IAmA I've ever read.

Good luck sir!

pieterh2 karma

Yeah, though I was a scrawny kid and bullied for being a nerd, turns out I'm pretty robust. :)

Datik2 karma

Hi Pieter, do you know origin of your cancer? did you smoke?

do you plan to do something that you have never did before?

pieterh4 karma

I did smoke for a couple of years but that was not the cause. Probable cause of original cancer was a liver fluke, from raw fish. And now it's metastasis, the bile duct cancer spreading to my lungs.

I'm planning on giving a wake/party/riot in June which will be a first for me.

poddiean3 karma

Eating raw fish puts one at risk of cancer? Christ, didn't know that :(

pieterh2 karma

The most shocking part of this story is that bile duct cancer from liver flukes is the major killer of men around my age, in parts of SE Asia, yet because it hits poor villagers for the most part, it's ignored and largely unstudied as a disease. To some extent I'm glad it's spreading into the West (per my theory that it's carried via cheap raw farmed fish masquerading as sea fish) because at least it'll force research. IMO the reason there is no real chemotherapy for this cancer is mainly lack of focus.

So at the cost of a few thousand Western lives, as this wave of sushi-born cancer hits, there's the chance of advances that will save hundreds of thousands, perhaps millions of people in poorer countries. Seems like a good trade.

For what it's worth, here's my propaganda: fish is shit. Stop eating it. Farmed fish is shit as we know. Ocean fish are wild, and it's unethical to eat wild food... and anyhow, all the shit of our world ends up in the sea and fish eat it and you really going to put that in your body? The only reason we think "fish = healthy" is because of massive government propaganda after WW2 to convince us to accept to eat this cheap protein.

FLTxPa2 karma

Back in 2009 I was diagnosed with a malignant tumor in my sinus and was given the bleak statistics of my not so bright future. For once in my life I thought, well shit, 2009 and science can't do shit for cancer yet? That sent me running to so called crazy/alternative therapies, and kind of glad I went against my own way of thinking to get cured. In addition to the standard therapies, did you look into alternative treatments for your problem?

pieterh7 karma

I'm not interested in that, for various reasons I've tried to explain in my article "A Protocol for Dying". The main one is pure skepticism. I don't disagree that some people will survive after getting alternative treatments. However some people survive even the worst diagnosis, without any treatment at all. You can't call it science until you have control studies and sufficient data. "Alternative medicine" is just wishful thinking, as afar as I'm concerned.

As for a tumor in the sinus, I'd hope that could be removed surgically, since cancer isn't fatal unless it cannot be resected, and spreads.

TheFakeNickMunce2 karma

I have no idea what you are going through but if it were me, I would look into clinical trials that could help me. Even if they may not give me the outcome I was looking for it would help science with more trials and hopefully help someone down the road. I may be bias towards this route since I am a genetics major, involved in biological research, and hope to go into more research after college. I wish you the best of luck.

pieterh5 karma

My doctors are/will look into it, they really do want to try to save my life. I can't possibly do a better search than them. And of course if they get me on a trial I'll leap at the chance. It's not so much about hope and miracles, it's about being part of the experiment and helping them get data.

aaronsb1 karma

I hope this does not sound crass.

You sound pragmatic and honest, and I am very sorry to hear you are dying. Have you considered cryopreservation? Participating in that turns your 100% death to less than 100%. I can't promise anything though. This guy makes a better argument than I do: http://waitbutwhy.com/2016/03/cryonics.html

On the other hand you have small children and they are generally accepted as your primary shot at continuing your legacy, and that's your choice to know if the money towards cryo would be better spent as savings to your family's future.

I did not know about you until now, and I'd like to genuinely thank you for improving things during your far too short stay on this planet.

All the best.

pieterh5 karma

I've not considered it, though people keep asking me. Let me ask you, if you had the choice between spending money that your kids might need to eat and have a home, on the tiny, tiny chance of self-preservation though sci-fi, would you do it?

aaronsb1 karma

I have thought a lot about this, and I have come to the conclusion that I can make both work given the correct life insurance arrangement. (I'm in the USA, it often seems easier to acquire high payout life insurance than quality healthcare)

The family gets some money, I get a selfish 1:zillion shot at reanimation, and everyone else around me gets to make jokes about popsicles.

In the grand scheme of things the cost of the trust and payout for one of the foundations is relatively small.

pieterh1 karma

Fair enough. I perhaps don't value my own existence that highly that I'd go to all that effort. I'm quite content to die and leave space for others.

aaronsb1 karma

I think you are a brave man, and have nothing but respect for the approach you take, which arguably is the humanist, rational approach.

It's an odd way to connect here, but your areas of expertise zero in specifically on a number of projects and concepts I'm working on professionally.

The idea that an ecosystem of applications and data exists as the more robust model is something I have been pushing for a while, and you articulate it so much better in what I've read in the last couple hours.

I'll be getting some more books for the shelf at work, so thanks for that.

pieterh1 karma

I appreciate it enormously when people buy my books. So thank you. :)

TimProvise1 karma

Have you ever thought about doing a gang load of USB Drives filled with a video for each major event in your kids upcoming lives? and getting someone to distribute them?

I hope all goes better Pieter, you seemed to have lived life to the fullest and have contributed to society in a positive way.

pieterh3 karma

Seems like a lot of organization, and fragile. "Congratulations on graduating university!" "Uhm, dad, I know you're dead, but I dropped out after a year and started a band and now I'm touring in Japan."

Also it seems... unnatural to try to force myself into their lives. You know how taking a photo of a place or event totally distorts your memory of that place? Memory is a delicate thing and IMO needs its space.

Horrible-Human1 karma

ever looked into psychedelic drugs (mushrooms) to help ease into the next phase? supposedly helps with fears and whatnot during these kinds of times. lots of research and stuff out there about it, i think.

pieterh2 karma

I'm not a great fan of mind alteration, being so happy and even dangerously proud of the mind I have right now. I've no fears, or anger, or self-pity. If/when it starts to hurt I'll definitely be asking for morphine or whatever.

kleptominotaur1 karma

Do you believe in God, or perhaps, do you think you will meet him when you die? Have you given this realm of thought any time? (I am very sad to hear of your state, and appreciate the courage it takes to do this kind of ama). Full disclosure, I am a Christ follower, and not trying to bop you in your most sensitive moments, I am genuinely curious to hear your thoughts. :)

pieterh8 karma

I'm a humanist (atheist) and believe in the power of people to work together. That actually seems to match reality. Gods and spirits, no, they don't form part of the model I use to understand things.

kleptominotaur2 karma

Interesting. I really appreciate your response. And if it means anything to you, I will be thinking of and praying for you. Thank you for sharing what you have here. :)

pieterh2 karma

My pleasure. :)

AsksAStupidQuestion1 karma

Have you tried Virtual Reality? Its quite impressive. If you haven't already I recommend you try it. Perhaps you could make a 360 video for friends and family as well.

pieterh2 karma

I'm sure its fun. I've a lot still to do. Accumulating more stuff isn't one of them. Thanks for the suggestion though!

2faymus1 karma

Before you die, can you get me a link to one of my sites on either of those university websites you work for? After all you said we could ask ANYTHING, right?

Anyways, what I find odd is that I rarely feel strong emotions for those who I hear about passing away through online media or social outlets. I'm not heartless, but it doesn't usually hit home with me due to all of the death we are exposed to nowadays. With you, it is a bit different for me. I don't know if it's your attitude or what, but I am sitting here feeling absolutely saddened for you. I truly hope that a miracle happens, and you make it through this. Seriously though, I'm really feeling for you. I don't know what else to say that won't bum you out, but again, I hope for the best.

Srs about links though.

pieterh1 karma

I'm not sure what you mean with the links; I don't work for any university web sites. So that's going to be a cautious "no".

2faymus1 karma

I mistook someone else's response as your response. In any case. I will accept a link from your blog.

pieterh1 karma

I'm still unclear with what you are asking with "accepting a link."

2faymus1 karma

Write an article on your blog and include a link to a site of mine. Or just put my link into an already made article.

pieterh1 karma

That sounds like an idea. So what kind of sites do you make?

14_days_left1 karma

Hey, me too! I've got about two weeks left, as you might be able to discern from my username.

My question is as follows: What was the most accomplished thing you've ever done?

And what was the best place you've eaten at?

pieterh1 karma

Well, I'm most satisfied having been a father to my kids, writing, working with lots of amazing people.

Best place I ever ate was Kogi King in Suwon.

mcmoomaw1 karma

Have you considered the use of cannabidiol oil or thc in general?

pieterh1 karma

Maybe. Nothing against it but no strong desire either.

aliceinwonderland2001 karma

What's your favorite childhood memory?

pieterh1 karma

We lived opposite the beach, in Oyster Bay, Dar es Salaam, Tanzania. After school we'd go swimming in the Indian Ocean. It was paradise.

TBEITBN1 karma

Have you considered writing letters to your children for future events? Such as weddings, new babies, graduations, whatever. Also, how old were you when your father died?

pieterh2 karma

My dad died this year on Easter.

I've not considered writing letters... I know my kids. They would find them, open them all, not really get it, and then lose them. This is part of why I wrote books, to leave them something they can't lose.

pippilangkous1 karma

I share your view: 'we live, we die'... and 'who needs a bucket list when you have love', which doesn't mean I don't find it tough. I myself have been diagnosed with metastized breast cancer (in the bones) since 2010 and have been treated with several kinds of chemo for the past few years. I must admit I'm a bit overpowered by your lifetime achievements: I don't have kids, I did'nt write any books, I have no legacy... This doesn't mean I feel my life has (had) no meaning. Could you formulate what the essence of the meaning of life is to you, apart from family and achievements? Ik vind het schitterend dat je zo open en vrij over je eigen dood kunt praten en zo ook anderen die gelegenheid biedt, thanks and take care!

pieterh1 karma

I'm lucky to be able to summarize my life in things I've done. But the reality I think is that we live through other people, in every conversation, every exchange. A thousand conversations, each changing both people. That is the meaning of life, IMO.

janacjb1 karma

I'm sorry to hear about your diagnosis and prognosis. You say that your family loves you and they support your decision. Have you discussed with them how they want you to die? Are you at all concerned that they might support your decision, but wish you were making a different choice?

pieterh3 karma

We went through the process with my father, who died on Easter this year, euthanasia. It was clear to everyone how well that worked. I mean in terms of the social group, family and friends, as well as the technical details of dying. So different from the heavy, miserable, stunned atmosphere at funerals. No drama, no suffering, just goodbyes and passing sadness.

Perhaps if we'd not been part of that, we'd be less sure as a family. Personally it would have been harder for me to make this decision. Yet after that experience, we're all agreed, and honestly, anyone who told me they'd rather see me rot and suffer from massive organ failure, out of some 'principle', I'd probably ask to leave and never talk to again.

[deleted]1 karma

[deleted]

tuuliel13 karma

I'm a human geneticist, working as an assistant professor at the Department of Systems Biology at Columbia University and New York Genome Center, and old friend of Pieter's. I find your comment extremely ignorant and obnoxious.

Tens of thousands of researchers - medical doctors, biologists, chemists, computer scientists, etc - have been working for tens of years to cure cancer, all around the world. Billions of dollars have been spent and are being spent on this effort. Trying to cure cancer is already one of the largest projects of the humankind, and much of it happens with open source code and open data.

Your idea that "an open source 'Let's solve bile duct cancer with metastases in the lungs' project" could somehow suddenly find a cure within a few months is extremely naive and completely ignorant of the realities of cancer research. This is not a piece of code that you can debug just like that on your computer - you'd need to do complex analysis to find out what has caused Pieter's cancer, figure out what drugs might target it (and potentially develop new drugs which takes many many years) and administer these drugs, while monitoring the situation with complex analyses, and risking making things much worse. This is like telling someone whose Mac crashed and who needs a working computer in 15 minutes that he should write a new OS.

pieterh8 karma

This is like telling someone whose Mac crashed and who needs a working computer in 15 minutes that he should write a new OS.

:-) but this works in the movies!

[deleted]-2 karma

[deleted]

btRiLLa-1 karma

You'd think in an AMA pertaining to such a topic there would be a more uplifting/appreciative vibe... Not a condescending and elitist one.

The fact that they had more than once person attack your way of support is sad within itself.

pieterh1 karma

There's no "they" here (until SRS arrives at least), just individuals expressing themselves.

btRiLLa-7 karma

Whilst this is 'right', it came off incredibly condescending and arrogant. Entitled too... I mean come on, that intro paired with the context? Ugh. The "old friend of Peiter's" would have sufficed.

He was merely trying to be supportive in the way he thought was helpful.

DanHeidel7 karma

He was trying to be supportive but the suggestion was very naive and ultimately quite condescending to Pieter. The geneticist here is completely correct and the OP's post, while well-meaning, is the atheist version of "You need to pray your way to better health".

It's suggesting that Pieter disrupt the remainder of his life, take time away from putting his affairs into order and saying goodbye to his family and likely undergo a great deal of suffering in order to invest his time into a hunt for a cure which is overwhelmingly unlikely.

Pieter is an intelligent person who has clearly taken the time to learn about his condition and is making an informed and carefully thought-out decision. It's pretty clear that it's not just a defeatist choice prompted by depression or an ill-conceived split decision. While it may not be the emotionally satisfying choice that movies and books have led us to crave, I think we owe it to Pieter to trust that he is making a choice that is correct for him.

btRiLLa3 karma

Easy there guys. This isn't a thesis -- what do you expect from a reddit AMA? You're going to get people firing off questions with some illogical fallacies in them.

Jeez. Expectations... Manage them.

pieterh3 karma

As I understood it, finally, the real question was, "can you do anything wrt to medical research?" and the answer is "yes but nothing dramatic, just be part of ongoing research and trials and provide my data."

pieterh6 karma

I'm always obedient to reality. Funny thing is often that's the radical perspective and one that can shock people. Reality often means the "impossible" is possible if you approach things a certain way. Reality also means accepting things, when there is no serious alternative.

It's like walking into a casino with your last $1,000 and hoping to turn it into a fortune to pay off your debts. Sure, it can happen. Yet reality says, if you do that, you are a fool. The chances of success aren't real, no matter what everyone at the tables believes.

Of course I don't want to die, and am prepared to go through no matter how painful and difficult the therapy, to improve my chances. Yet I'm a scientist, a pragmatist, and to pin hopes on statistical outliers is in my opinion as foolish as playing the lottery. Worse, since it distorts the picture for others and interferes with the vital social process of grieving.

dyskgo1 karma

Hi Pieter, as you are someone who is facing death, I was wondering your perspective on a couple things.

First, do you think length of life is more important or quality of life, or some balance between them? I ask because you have accomplished a lot in your life and say you have no regrets, so I'm interested in your insight on this.

Also, when do you think its a good idea to compromise on your health in order to achieve other goals? For instance, someone already mentioned how coders in general sit for extended periods of time and get little sleep. Other careers and activities have similar risks or health implications. (I'm not saying you did this, but I'm just interested in your insight since you are facing death).

pieterh2 karma

I don't think there is a tradeoff: nothing you do that shortens your life would make it qualitatively better, IMO. Aim for happiness and good health, I'd say.

nsafbiciatsa1 karma

Given your involvement in the fight against patents and other civil liberties related activism, has the thought crossed your mind, that a Spider agent cancer-poisoned you?

pieterh1 karma

Sometimes it's just cancer.

davelab61 karma

In the comments of http://hintjens.com/blog:115 Andrea wrote, "I often think about what you told me about having kids."

What is your advice about having kids, and being a father in general?

pieterh1 karma

I can only speak for myself: being a father to my kids was what kept me happy and productive, above all else.

TheNimbrod1 karma

A German Actress said short before her cancer death: "There is a bit of free rein (lit. said a fools freedom). The freedom of the moribounded." would you agree with it? And If you agree how does it made you more free?

pieterh1 karma

Yes, having no long term plans or obligations is definitely a sort of freedom.

TheNimbrod1 karma

So you just planing for a week or two?

pieterh2 karma

Honestly, apart from the party, and the chemo every two weeks, I'm living a day at a time. Not planning at all.

72tacos1 karma

I saw your question about hypothesizing reasons god may have sent us hurricane sandy as an interesting intellectual exercise and I wanted to pose a similar hypothetical to you. Pardon me if you think it's rude and please note that I am agnostic, so I'm not attempting to proselytize here. Assuming god exists and that god really likes a good story, what do you think your story is? What is the moral of the story? (Best wishes and by the way I love your country).

pieterh1 karma

I can't or won't answer that question and I think you're confusing me with someone else (I haven't spoken about Hurricane Sandy and would never make hypotheses involving shamanistic desert cults unless it was "what kind of mushrooms were these guys on?").

72tacos2 karma

Sorry, I think I did not explain very well. It was this post: https://www.reddit.com/r/atheism/comments/12dkc7/lets_make_sandy_a_message_from_god/ which may or may not be you. I wasn't asking for speculation on god, but I suppose now in a very poor attempt was asking for your take on your own story, your own subjective experience of life, as a story. I'll try harder to phrase things better in future. Best wishes.

pieterh1 karma

Oh shit, you caught me red handed. Yes, that was me. I was attempting a hack to use religion against the religious. It got no votes, which is what it deserved. Sorry for my reply then...

I'd not know what story to tell. Maybe the chemo I had today is taking effect, or it's been a long AMA, I'm kind of tired and going to snooze a little... :)

Compubell1 karma

Als je nu op je leven terug kijkt was het al de opofferingen die gemaakt hebt waard?

pieterh1 karma

Ja, zeker.

sock20141 karma

Have you considered giving yourself a non-zero chance of continuing by getting cryogenically preserved?

pieterh7 karma

Someone asks this question in every thread I've done, with two meanings. One, to give myself a non-zero chance. Two, to preserve my DNA to help my descendants understand if my cancer had a genetic basis.

The second is sensible though doesn't need cryogenics. Though in my case the cancer most likely came from eating raw fish from a farm in SE Asia somewhere. Liver fluke, charming little animal, produces carcinogens so it can munch on the tumors. Bile duct cancer is a leading cause of death for 50+ men in many SE Asian countries. I assume cheap raw fish made its way into sushi I ate somewhere along the line. No genetic disposition except "being male and about 50".

As for non-zero chances, I find it almost obscene to waste time and money and hope on such things.

jnardiello1 karma

I strongly believe that software engineers and coders lifestyle is some of the worst history have seen (yes, worst than many jobs in a factory for example). Do you think your work and lifestyle played a role in developing your condition?

Lately I've also been puzzled with the difference between being "terminally ill" and "chronically ill". How do you see yourself? Eventually many conditions considered "terminal" will go on for years and many "chronic" conditions will end up with sudden death. Have you ever considered shifting your point of view and start to simply consider yourself as someone with a chronic disease?

I've discovered your work since your announcement back in april and your books are just amazing. I wish we had a chance to meet in person as you would be a great role model for me (as a young adult). Thanks

pieterh4 karma

There's a huge range in working conditions for knowledge workers. Many do have it very hard, to the point where I consider them to be abused. Personally, I've been fortunate. I've always been a self-starter, my first business at 17 was writing and selling video games for Commodore home computers. I've carefully stayed away, all my career, from toxic environments, and done whatever it took to work close to home, or be well-paid to work with clients.

And when there's no work, I write, and that is good too. I do believe that everyone has some power to improve their own conditions, though often they need a nudge or some coaching to move in the right direction and above all to trust themselves.

A lot of my work with the ZeroMQ community is that, coaching and nudging, and it mostly works. So I know this is real for at least some people.

Terminology now. "Terminal" means a doctor estimates less than six months to live. "Chronic" means the illness isn't going to go away yet isn't going to kill within six months. I assume this varies across countries. Also estimates are pretty fuzzy. Two doctors will often disagree.

For me, it is terminal unless against all odds my cancer responds to chemo. It's an aggressive cancer that does not generally respond (you can research this if you like, I don't anymore, it's too depressing.)

AsksAStupidQuestion0 karma

Are you exploring any new treatments in addition to chemo? I recently saw an innovative treatment involving genetically modified viruses that allowed the body to have an immuno response. Might that be an option if it's available?

pieterh3 karma

My oncologists are exploring other potential treatments. There are some research clinics that have programs. I'm not familiar with the details. Since I'm in good health apart from the cancer, not a smoker, etc. I would qualify. As for looking for experimental treatments myself, no. Too much work and cost and without the support of my doctors, no way to know how real it is.

8head0 karma

I am wondering if you have looked into CBDs? If not please read this article as it may help you with your cancer :

https://www.medicaljane.com/2015/03/11/why-the-nih-may-be-investigating-cannabinoids-for-possible-cancer-treatment/

pieterh3 karma

I've said this several times in the AMA and really believe it: the only people qualified to search for treatments are my doctors. Not me. Not random people on the Internet, no matter how well intentioned. If my doctor suggests I take part in a pot trial, I'll go for it. Otherwise, it makes no sense (to me, others can do as they please, obviously.)