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?”
Had a family member pass away and was part of their long term care team. The exact same thoughts came through my head too.
The 'funny' thing is that for the first few days, you can do a lot, but with medical stuff, it's mostly just waiting anyway. Even the first month, you can power through a lot. You become an expert fairly quickly at the little health thing. And then find that we know next to nothing about biology.
But after weeks, it's supprising how little you can do that is 'extra'. The grind really gets to you fast. And your putting your own needs away for just that little time catches up on you. You end up needing support quickly too. Not wanting support, needing it.
In the end I was able to hold my head high and say I absolutely did everything I possibly could, even to the point of needing help myself. I was just surprised at how little ways that went towards affecting the outcome.
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.
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 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 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 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
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.
This post was actually really tough for me to read, because it read exactly like the 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 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 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?
At some point, every man comes face to face with the lie of his potency. We're told our willingness to turn ourselves into ruthless avatars of purpose makes us powerful. Unstoppable. We can do anything if the call is great enough. Is it suspicious that the call takes the voice of more powerful men? Pay it no mind. The world is yours for the taking.
Then, one day, the tide comes in. You learn what old men know. What women know. What every victim of circumstance knows. Sometimes the world just happens to you.
Thank you for sharing the story. I appreciate your taking the time to write out all of these things despite having to also do the work to combat the condition.
About the kids thing: Genetic causes for these are super hard to isolate but if, perchance, science sees fit to give us the information then you do have embryo selection available to make this choice safely.
Rooting for the two of you. And just wanted to thank you for the story. The sum of anecdotes often is the source for good hypotheses for science. I think you’re doing a good thing sharing what you’re doing.
I'm confused by this post because it seems like his partner got best therapy possible with two surgeries followed by medications without going blind or having other major hormonal issues which can happen after surgery. As correctly stated in this thread prolactinomas aren't a death sentence or even (technically) a brain tumour, and the major risks have been avoided so far. What exactly is being accomplished by a VC deeply researching this case beyond satisfying the valid desire to help your life partner?
I had one of those when I was 14, I am 44 now. Every day is a blessing for me, but I cannot imagine what my family went through. Specially now that I am a dad myself.
Yeah so I had family diagnosed with GBM and they went the denial route real hard. They got scammed out of mid six-digits by fraudsters offering some bogus cure, they didn't do anything on their bucket list, they spent the entire time telling themselves they were going to get better and didn't appreciate their last years at all, they didn't do things they had meant to do before they died because they were stuck with this idea that they could beat it. That sort of attitude can happen to family as well. Don't avoid reality by telling yourself you can fix it, because you'll miss what's important. In all overwhelming likelihood, you are not what oncology needed to cure GBM, and spending time and energy trying to cure it would be better spent with your loved one. This is it. This is what you have left with them. Get real.
I'm sorry, but LLMs aren't a magic spell that can solve the world's problems. If you are not a stranger to the biomedical world, then you understand that new treatments take at least a decade before they are treating patients with them out of trial. And the experts, they need experience actually administering these treatments in order to form the kind of opinions you describe them differing on. Plus there is a systemic logic to the way these things are developed. Profit. For example, no new anti-anxiety drugs have been created in 20 years, because it is cheaper to just test SSRIs that have passed FDA trials for other things like depression.
LLMs might be useful at generating text, but they cannot research, fund, develop, manufacture, educate, distribute, treat.
Like others have said, focus on speaking with your partner and deciding your plans together.
My girlfriend had a brain tumor, and a very long complicated medical history.
When we met, she rattled, from all the pill bottles and was completly unfit.
I did not set out to intervene but some of it was a bit much and was just wrong.
I went to dozens of medical appointments, mri, cat scan, dog scan, the machine that goes "bing",her medical records would break your toe if you dropped them.
All I did was read labels and research ingredients and offer cleaner alternatives and well, keeping up with me forced her to be a LOT more active, and she found she could do without the prescription and non prescription drugs and eating junk.
That was 15 years ago, when she was planning her own pallitive care facility,(under medical supervision)
We are no longer together, but she has two kids, and is working and active, no drugs, tumor is not detectable.
I have some very strong personal feelings about the factory food, and always advocate for , whole, single ingredient food items, no sugar or other white crystaline substances, and a great deal of physical activity/working to capacity and a bit more.
It is anecdata, but it is based on actions that have no failure mode, require nothing exotic, just the incrimental replacement of bad stuff with known healthy alternatives, but ending up living absolutly free of chemicals and factory food, zero plastics,or other synthetics,which is a not an easy thing to do.
Another thing is that like the guy blogging this,I felt something stronly about her condition,but the flip, she had been diagnosed with the tumor, but I felt that she was actualy ok, under all of the surface medical problems and data, and I never did dispute anything, but very strongly defended the idea of actions that can pose no harm, ie: water not syrupy glop, brown rice, I dont care how long it takes to cook, etc,etc,etc. VS the outside concensus that if you are going to die,now, then this is permission to indulge in excess and small harms are now irellivant.
its very rational to say things to try and protect this person from himself. know that it is only that. rational.
if you think life is only rational its more likely lack of experience than knowing it better. Most of life, is infact not rational.
I'd want to tell him to save himself, but i do hope he saves her,.because regardless of anyone's words, he wont give up, maybe destroy himself too, and thats ok.
I am truly sorry how unfair life can sometimes be. I wish such things not on my worst enemies. I hope in some aspect of life Love will persist, prevail or return into your life OP.
I'll echo everyone else's concerns for the author (and wife of course). But I'm kind of concerned about the logic behind the plan? Is the idea to focus primarily on FDA approved compounds and convince doctors to give them to her off-label? Or a supplement or something they can just acquire easily?
Otherwise what's left? Hope your AI collaboration reveals novel untested compounds or interventions and somehow forgo all standard testing for safety and effectiveness and just produce and adminster them to her?
Obviously the goal would be to find some intervention that a) works b) has no serious lasting side effects. Hopefully the author and wife don't choose to forgo all other recommended treatments in the meantime hoping the AI driven clinical trials can be speedrun or that AI is so smart clinical trials are uneccesary.
36 comments
[ 3.4 ms ] story [ 48.7 ms ] threadThe 'funny' thing is that for the first few days, you can do a lot, but with medical stuff, it's mostly just waiting anyway. Even the first month, you can power through a lot. You become an expert fairly quickly at the little health thing. And then find that we know next to nothing about biology.
But after weeks, it's supprising how little you can do that is 'extra'. The grind really gets to you fast. And your putting your own needs away for just that little time catches up on you. You end up needing support quickly too. Not wanting support, needing it.
In the end I was able to hold my head high and say I absolutely did everything I possibly could, even to the point of needing help myself. I was just surprised at how little ways that went towards affecting the outcome.
There but for by Grace go I
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.
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.
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
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.
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.
The symptoms if they came back would kill any hope for traveling anyway
>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.
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.
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.
Hopefully with a better end.
Then, one day, the tide comes in. You learn what old men know. What women know. What every victim of circumstance knows. Sometimes the world just happens to you.
We've been using "AI" in science far longer than you realise. We happily take on new tech at breath taking speed.
Don't waste your time, please just focus on her and not the disease.
About the kids thing: Genetic causes for these are super hard to isolate but if, perchance, science sees fit to give us the information then you do have embryo selection available to make this choice safely.
Rooting for the two of you. And just wanted to thank you for the story. The sum of anecdotes often is the source for good hypotheses for science. I think you’re doing a good thing sharing what you’re doing.
some people do manage to cure their own disease sometimes.
I would strongly suggest seeing a therapist. I’ve experienced traumatising moments in life, and therapy has been a great help.
LLMs might be useful at generating text, but they cannot research, fund, develop, manufacture, educate, distribute, treat.
Like others have said, focus on speaking with your partner and deciding your plans together.
if you think life is only rational its more likely lack of experience than knowing it better. Most of life, is infact not rational.
I'd want to tell him to save himself, but i do hope he saves her,.because regardless of anyone's words, he wont give up, maybe destroy himself too, and thats ok.
I am truly sorry how unfair life can sometimes be. I wish such things not on my worst enemies. I hope in some aspect of life Love will persist, prevail or return into your life OP.
Otherwise what's left? Hope your AI collaboration reveals novel untested compounds or interventions and somehow forgo all standard testing for safety and effectiveness and just produce and adminster them to her?
Obviously the goal would be to find some intervention that a) works b) has no serious lasting side effects. Hopefully the author and wife don't choose to forgo all other recommended treatments in the meantime hoping the AI driven clinical trials can be speedrun or that AI is so smart clinical trials are uneccesary.