I had pretty much exactly the same thing happen to me, in 1996. I probably had 2 days to live. Benign brain tumors are bad. They don't have to be cancer.
I was given Option 3. I decided not to take it, and they were fairly confident that I'd be in a wheelchair, the rest of my life. That did not happen.
As things turned out, I was OK, but it took me a couple of months to learn to walk and chew gum at the same time.
Sometimes, this is the gift of having a trained chaplain, pastor, or advocate with you who has navigated these moments before. I’ve been in these moments with people in my church, and I don’t think it is always about the doctors or healthcare providers withholding info. Sometimes, you are the tenth person they have seen in a short period of time, so they are trying to communicate as best as they can, as efficiently as they can. Having someone - doesn’t have to be religious to be clear - who has been in those rooms can be helpful. They can repeat what the doctor says, because it can be so frightening and hard to hear.
I have asked doctors and anesthesiologists to come back into the room and finish answering the questions. I know they are busy. But I know they want to put you at ease and give you all the info you need.
- What side effects can we expect from the medication? - What alternatives are possible? What if the treatment doesn’t work? - What is the prognosis - worst case and best case? - How long will recovery be? - When can family members/loved ones see them? - Who will contact the family members during the procedure? - How soon will the patient be up and about? - Do you know the patients limits and directives - like no resuscitation?
More than once, I have helped the doctors hear something that they had missed, buried in all of those charts. More than once, I helped a friend or loved one gain some clarity on why the course of action is best or whether they want to explore something else.
Powerful story! And helpful language to think about them as a Bridge to Nowhere.
> But more than this I would come to learn that that I'd fallen into a trap of my own making.
I'd blame the medical doctor. In similar cases, they use misleading remarks and partial information to guide the patient in the path they prefer.
It seems like the doctor has fallen victim to the politician's fallacy [0], summarized well on Wikipedia as
1. We must do something.
2. This is something.
3. Therefore, we must do this.
People seem to feel like there's merit in "trying something, anything" even if by trying something you may actively make the problem worse. We need to accept that we only have limited control. Bad things happen.
Was it glioblastoma in the end? The author never said.
Yes. (I read all the articles on the blog, and it does in fact turn out to be glioblastoma)
That's a bit harsh on the doctors. If you or your loved one have a solid mass in the brain an evening of googling can tell you that it's most likely the end of the road rather sooner than later. There's very little anyone can do to help you feel better or retain illusion of agency over your life
When you are finding this out it's usually because you already have significant symptoms that progress because growing mass puts a pressure on the brain. So Option 3 is increasingly suffer what you are already suffering till death, prompt one in case of fast growing tumor, more distant in case of the slow one. If you want to do anything else the best course of action is to remove what shouldn't be there. You could in theory remove just a small bit just to find out what it is, but it won't help with the symptoms you already have and risks of biopsy are very similar to risks of surgery which will also potentially give you more information. Also the information that biopsy could provide would be most relevant in the worst case so that the surgery is done with large margins which might result with few months longer survival but way worse quality of life.
So a surgery is basically a no brainer in your already terrible situation. If you are super lucky it might turn out that you had in your brain something relatively benign which, after recovery can give you at least years of normal life.
Context: My partner has a large grade 3 glioma and first surgery, radiation and chemotherapy gave her 5 years of completely normal life and the second one after recurrence another year.
Our approach to all of this was that no one really knows how long they specifically are going to live. And that doesn't change with diagnosis. Statistics is just that. Statistics.
Calling such life bridge to nowhere is just a bleak perspective. Same could be said about every life with similar accuracy.
> So a surgery is basically a no brainer
I see what you did there.
Incredibly poignant writing with such clarity.
I feel truly sorry for the author.
How to avoid tumours growing in brain?
>Most brain tumors form in people without any known risk factors. But some factors may increase your risk for brain tumors, such as:
>Radiation exposure. People who have had radiation to the head are at higher risk for brain tumors. Most often this exposure comes from radiation therapy used to treat another type of cancer, like leukemia during childhood.
>Certain inherited syndromes. People who are born with certain syndromes, such as neurofibromatosis, von Hippel-Lindau disease, Li-Fraumeni syndrome, and tuberous sclerosis, have an increased risk of brain tumors.
>Family history of brain tumors. Most people with brain tumors don’t have a family history of the disease. But in rare cases, tumors can run in families.
>Weak immune system. People who have a weak immune system have a higher risk of developing central nervous system lymphoma. This includes people who have AIDS or who have had an organ transplant.
https://www.urmc.rochester.edu/encyclopedia/content.aspx?con...
This one is really promising:
>A study found that people who walked or ran at least 1.8 MET·h·d had a 42.5% lower risk of fatal brain cancer.
It may be a bridge to nowhere for the patient but it is a profit opportunity for hospital owners.
You're just another input in their number go up paperclip maximizer - where your road leads beyond their number go up is not a concern for them.
Your comment hsitory shows you really seem to like this "paperclip maximizer" analogy; I'm not sure what it means.
The term "paperclip maximizer" is a reference to a thought-experiment explained in this 2014 interview with Nick Bostrom: https://www.huffpost.com/entry/artificial-intelligence-oxfor...
> Suppose we have an AI whose only goal is to make as many paper clips as possible. The AI will realize quickly that it would be much better if there were no humans because humans might decide to switch it off. Because if humans do so, there would be fewer paper clips. Also, human bodies contain a lot of atoms that could be made into paper clips. The future that the AI would be trying to gear towards would be one in which there were a lot of paper clips but no humans..
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Of course, back in 2014 was before LLMs and visual-image-generators were a thing (StyleGan's paper was 2018), but Roko's Basilisk was described in 2010, which would colour people's thoughts of "AI" back then somewhat differently to today:
2014: "AI" means perfect and unbiased reasoning ability, total objectivity (given one's axioms); it will have the ability to outthink its human operator/sysadmin and somehow "escape" onto the Internet, and make a living for itself trading its services for Bitcoin before going-on to do literally anything it wants, like hack Russian nukes to bomb the US, so a paperclip-making AI really could kill us all.
2024: "AI" means using statistical tricks to generate text which contains frequent factual errors, unsound reasoning, and reflects our cultural-biases back at us. A paperclip-making AI will be the next Juicero before running our of VC funding.
Universal Paperclips, it's a clicker game where the only object of the game is to make your count of paper clips go as high as possible. With that in mind I'm sure you can reason out his intent now.