- I'm... concerned for the health of this man. I appreciate his dedication, but I read a level of love that's pressing past caring for the human and into beating yourself up.
Did she ask you to cure this tumor? Did she ask you to post about it?
This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.
It leads to especially dark places when they don't succeed.
I wish him all the best, but don't lose sight of the human suffering the illness and what they want.
- This post was actually really tough for me to read, because it read exactly like a suicide note a friend had sent me (and others) after his partner had died suddenly. It chronicled the joy and happiness in their relationship, her illness, his slow descent into desperation, and, after she passed, his resolve to follow her.
If the author of the post is reading these comments, your heart is in the right place, but just be careful and take care of yourself. Don't lose the forest for the trees.
- I fully agree, there is something unsettling about this post and I can't put my finger on it, but here is an attempt:
His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong
- I don’t agree.
She has posted publicly about her condition.
He is 25 years old and trying to cope with a hard life event. Let’s not act like it doesn’t affect him. It affects everyone around her and the strong reaction from him is really a positive reflection on her, isn’t it?
His post is written and edited to garner sympathy and support. I don’t mind that for a naive but noble cause. And there is always a slim chance of success.
- What would you suggest as an alternative? Just quietly follow the doctors' instructions and hope for the best?
- Yes. Sometimes people just die, and you have no influence on that.
- Hmm. Perhaps it serves as a commitment to post about this publicly? And as one other person mentioned, you have a far better chance of beating this today than just a few years ago, especially with some money and connections.
>It leads to especially dark places when they don't succeed.
The same can be said about child birth, and yet, people still make kids.
- I don't know, she is not terminal, she is in the part where the knowledge is lacking, so what he is doing is actually reasonable. Nobody knows anything, giving a shot to save the love of your life, with their approval, might be good, assuming you still spend time with them.
The symptoms if they came back would kill any hope for traveling anyway
- I think that for an average person a few years ago, probably there’s nothing meaningful they could have done.
For a smart VC with some money and with some knowledge of biology and willing to put in some hours, and with a disease that is “on the bubble”, i.e. not a slam dunk for modern medicine, but also not a death sentence, that there’s a decent chance that he can meaningfully improve the outcome.
I also see what you’re saying about the vibe and making it about himself, but that’s also helping him get attention… here we are talking about it. With more attention he’s going to get more skilled people helping her out.
- It’s an innate human desire to do everything in one’s power to save the person you love.
If you had a feeling you could do more, would you not try?
When you’re not personally involved, it’s easy to see that this might be misguided, but when living through it and experiencing daily fear of loss of your partner, it’s extremely difficult to think logically.
I have seen this multiple times and it’s always so unbearably sad.
- I often think that I would do the same thing if I or someone I loved had a chronic disease, either go all in in a specific project before I die, or go all in on a moonshot to accelerate a cure.
A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".
It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.
- I agree the way he writes about it is uncomfortable. At the same time I also think some people motivate themselves with a version of "Do or do not, there is no try." He desperately wants to do something, but a lot is simply out of his hands. Still, that energy has to go somewhere.
- It's very possible that his partner is fully aware of and supportive of his mission. And I do agree that he should ensure that this is something his afflicted partner wants.
One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.
- Please be careful not to put words in my mouth.
- Yes I was just adding, was not contradicting.
- If we had a machine today with unlimited intelligence could it figure out a cure for cancer with our currently available data, or would it just request more data and ask us to conduct more studies? Is the bottleneck our ability to recognize patterns in the current data (i.e. intelligence) or the lack of sufficient data to determine a pattern? Or is it some other more nebulous thing that we aren’t considering?
- I’m personally convinced that at least for physics we have sufficient data for the next big theoretical breakthrough and we lack only the imagination and the computer power required to numerically validate the maths through simulations.
It feels an awful lot like the decade before Einstein’s landmark papers on quantum mechanics and relativity.
Watch how people like Terrence Tao et al are transforming how mathematics is done: with AI assistance and the Lean theorem prover, at a level of collaboration and consistency never before possible.
Something similar is just around the corner for the other sciences, the ability to mechanise the integration of vast tracts of previously disconnected facts and insights.
Surely something of value will pop out of the result…
- That long duration stress from caring for a loved one with a potentially fatal illness is difficult to describe. I remember sharing that same driving thought of “if this goes south, will I honestly be able to say I did everything I could?”
- How are you doing now? How long ago was it?
- I had a (micro)prolactinoma that was successfully treated with medication. Even though it was nowhere near as "bad" as this man's girlfriend's, getting it diagnosed took almost 2 years and the possibility of prolactinoma was dismissed outright by several doctors.
It should be pointed out that the pituitary gland sits at the base of the brain and prolactinomas are not technically considered "brain tumors" because they're not in the tissue of the brain. So it's a mischaracterization to keep referring to this as a "brain tumor" and a bit of an odd one for someone trying to start a medical research effort.
Unfortunately, the reality is that sometimes life just doesn't deal you a good hand. I think it's sad this man is talking about children when prolactinomas are a leading cause of infertility and it sounds like, for a variety of reasons, this man's girlfriend has one that is very difficult to treat. While it's OK to always hope, it's also possible to cling to false hope so strongly that it prevents you from accepting and moving forward with the life you have instead of the life you envisioned.
- If I understand it correctly, a prolactinoma can make it harder to have children mainly because high prolactin can disrupt ovulation, but it does not automatically mean having a child is impossible. In many cases, treatment brings prolactin back to normal and fertility can return. And if carrying a pregnancy is not possible for medical reasons, there can still be options like IVF, and having someone else carry the pregnancy where it is legal and appropriate. So it may be more complicated and it can be very hard in some cases, but it is not an absolute dead end. A hopeless tone is not very useful here because it can discourage people from exploring realistic options and evidence based treatment paths.
- My girlfriend also has this and I just found out my coworker has been dealing with it for some time. Has me wondering just how common it is
- Prolactinomas, especially tiny ones, are super common. They often find them during autopsies. Most people with them experience no symptoms.
- Are these deadly?
- Not intrinsically or commonly deadly. https://www.hopkinsmedicine.org/health/conditions-and-diseas... says "1 in 10 people will develop a pituitary adenoma in their lifetime" - pituitary adenomas is the more general class of these benign tumors, as the pituitary gland produces multiple hormones.
- People will go to the ends of the earth and back for someone they truly love. (Some people will even do it for hate, too!)
- This is officially the most unhinged LinkedIn post in the world. This is the winner.
- This sounds a lot like "Lorenzo's Oil" https://en.wikipedia.org/wiki/Lorenzo%27s_Oil
Hopefully with a better end.
